Re: Question about type of physician

[Guest guest]

Darrin, The good thing about a Diagnosis is the treatment, as MS and NS are treated a lot different!  And yes you are so right, the patient usually does know more then the doctor. When I was dx 15 years ago, My doctor, and I learned together, and a lot of

what I learned I learned right here with the wonderful people here. Tracie was like an angel sent to me, she helped me on this long road. I had a dx before I ever had symptoms, unusual, but at least that helped

my doctor to know which direction to take in treatment. There are multiple articles here to help you on your way. \Good luck on the tests, my bet is on Sarcoid.  Welcome. Marla

 

I've been operating under the assumption I have ms and went to see an ms specialist.

When I realized the fact I've had dry eye and mouth for a decade or more matched

Sjogrens I added it to the list. Then I slowly realized neurosarc explains all those things.

 

Tests have thus far not been positive for ms. My specialist sent me for a lung CT today

and I'm aware not all people with neurosarc have lung issues though it is common. I

have an ACE level of 95 (it was 85 on a test a month or so before so it's rising). My

calcium level is very high normal which is unusual because I'm lactose intolerant and

have rarely eaten dairy in the past couple decades.

 

I was going to ask what type of physician I should have my ms physician refer me to

but that was answered as they called back with the results of the CT as I was typing

this. Apparently I have some kind of growths such as granulomas in my lungs and they

want to do a PET scan now to see if its sarc or cancer. Apparently healthy people can

have granulomas too but it is unusual.

 

With neuro symptoms that match, a negative paraneoplastic panel (which indicates an

incorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland in

my lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case life

just got more interesting.

 

I don't know why but I don't find either prospect particularly alarming. I guess if you're

already screwed putting a name on it is just a technicality even if a wanted one.

 

Wild speculative opinions welcomed. When it comes to rarer stuff experienced patients

are better sources of info than doctors many times.

 

Cheers,

Darrin

[Guest guest]

Thanks for your opinion Marla.

I've already learned one very important thing here. I made the hospital promise,

if the PET too was inconclusive, they'd biopsy the salivary gland before the lung.

People here have said they'd gotten lung biopsies that turned out to be inconclusive

themselves, were dxed by a biopsy of the salivary gland, and wished they'd done

that first. Personally I'd rather have the gland biopsied prior to getting even the PET

scan but I'm tired of fighting the establishment and this seems a relatively harmlessbattle to let them win.

Just having gotten a physician, any physician, to recognize I'm having problems after

all these years seems like a huge victory whatever the outcome. As an example I've

been xrayed twice in the past year and neither my pc nor the ER noticed anything. It

is a relief just to be treated like I'm not nuts for a change. Now they might end up

thinking I'm nuts because I'm not worried as much as they think I should be but after

so many years of being powerless to do anything or get any help I've realized worry

changes nothing and only takes the energy we so need.

Twenty years or so ago I coughed up a lot of blood for about a month. I didn't have insurance

or money for scans to figure out what the problem was and a doctor told me it was probably

lung cancer and I should likely go home and get ready to die. Turns out sarc granulomas

can cause that too. If it was lung cancer then I should be long dead by now but instead I went

home and lived a normal life. I was pleased to fool them then and I'd like to do that again.

If not I've already greatly exceeded expectations anyway.

My biggest fear in life has always been to be bored so I am happy to live in interesting

times!

Thanks again.

Cheers,

Darrin

To: Neurosarcoidosis From: mebramer@...Date: Tue, 27 Apr 2010 21:04:47 -0600Subject: Re: Question about type of physician

Darrin, The good thing about a Diagnosis is the treatment, as MS and NS are treated a lot different! And yes you are so right, the patient usually does know more then the doctor. When I was dx 15 years ago, My doctor, and I learned together, and a lot of what I learned I learned right here with the wonderful people here. Tracie was like an angel sent to me, she helped me on this long road. I had a dx before I ever had symptoms, unusual, but at least that helped my doctor to know which direction to take in treatment. There are multiple articles here to help you on your way. \Good luck on the tests, my bet is on Sarcoid. Welcome. Marla

I've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

[Guest guest]

Darrin, What a great attitude to have, I just live one day at a time, because like you said worry just zaps the energy out of me.  I live by " Do not worry about tomorrow for tomorrow will take care of itself " .

I was lucky to be dx with a swollen lymph node, but before my bx they told me I more then likely had lymphoma, I was just getting ready to leave on vacation, and ask if I should postpone it.  The doctor said, no go have fun, the lymphoma will be there when you get back:) 

It took about a month and many doctors before they decided it was Sarcoid.   I had my liver bx once too, as my liver enzymes went up, but I was told it was a fatty liver, and probably happened when I gained a lot of weight fast, Ya being on steroids for 3 years, will

do that to you, so if I lose the weight slowly my liver will be fine, but I will now always have elevated enzymes, so the doctor doesn't get to excited about that anymore. ya would be nice if they bx the Salivary gland first, Good luck again, and I will be thinking

positive thoughts for you. Marla

 

Thanks for your opinion Marla.

 

I've already learned one very important thing here. I made the hospital promise,

if the PET too was inconclusive, they'd biopsy the salivary gland before the lung.

People here have said they'd gotten lung biopsies that turned out to be inconclusive

themselves, were dxed by a biopsy of the salivary gland, and wished they'd done

that first. Personally I'd rather have the gland biopsied prior to getting even the PET

scan but I'm tired of fighting the establishment and this seems a relatively harmlessbattle to let them win.

 

Just having gotten a physician, any physician, to recognize I'm having problems after

all these years seems like a huge victory whatever the outcome. As an example I've

been xrayed twice in the past year and neither my pc nor the ER noticed anything. It

is a relief just to be treated like I'm not nuts for a change. Now they might end up

thinking I'm nuts because I'm not worried as much as they think I should be but after

so many years of being powerless to do anything or get any help I've realized worry

changes nothing and only takes the energy we so need.

 

Twenty years or so ago I coughed up a lot of blood for about a month. I didn't have insurance

or money for scans to figure out what the problem was and a doctor told me it was probably

lung cancer and I should likely go home and get ready to die. Turns out sarc granulomas

can cause that too. If it was lung cancer then I should be long dead by now but instead I went

home and lived a normal life. I was pleased to fool them then and I'd like to do that again.

If not I've already greatly exceeded expectations anyway.

 

My biggest fear in life has always been to be bored so I am happy to live in interesting

times!

 

Thanks again.

 

 

Cheers,

Darrin 

To: Neurosarcoidosis From: mebramer@...Date: Tue, 27 Apr 2010 21:04:47 -0600

Subject: Re: Question about type of physician 

Darrin, The good thing about a Diagnosis is the treatment, as MS and NS are treated a lot different!  And yes you are so right, the patient usually does know more then the doctor. When I was dx 15 years ago, My doctor, and I learned together, and a lot of

what I learned I learned right here with the wonderful people here. Tracie was like an angel sent to me, she helped me on this long road. I had a dx before I ever had symptoms, unusual, but at least that helped

my doctor to know which direction to take in treatment. There are multiple articles here to help you on your way. \Good luck on the tests, my bet is on Sarcoid.  Welcome. Marla

 

I've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things.

 Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). My

calcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades.  I was going to ask what type of physician I should have my ms physician refer me to

but that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people can

have granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland in

my lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you're

already screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times.

 Cheers,Darrin

[Guest guest]

I take to both a rhuematologist & a neurologist. The rhumetologist manages her prdnisone & use to take care of the methotrexate. He now confers with the neurologist to manage her cellcept. Her neurosarcoidosis is in the brain and shows up as granulomas in the brain. They are attempting management with the cellcept. MattSubject: Question about type of physicianTo: "neurosarcoidosis " <neurosarcoidosis >Date:

Tuesday, April 27, 2010, 3:35 PM

I've been operating under the assumption I have ms and went to see an ms specialist.

When I realized the fact I've had dry eye and mouth for a decade or more matched

Sjogrens I added it to the list. Then I slowly realized neurosarc explains all those things.

Tests have thus far not been positive for ms. My specialist sent me for a lung CT today

and I'm aware not all people with neurosarc have lung issues though it is common. I

have an ACE level of 95 (it was 85 on a test a month or so before so it's rising). My

calcium level is very high normal which is unusual because I'm lactose intolerant and

have rarely eaten dairy in the past couple decades.

I was going to ask what type of physician I should have my ms physician refer me to

but that was answered as they called back with the results of the CT as I was typing

this. Apparently I have some kind of growths such as granulomas in my lungs and they

want to do a PET scan now to see if its sarc or cancer. Apparently healthy people can

have granulomas too but it is unusual.

With neuro symptoms that match, a negative paraneoplastic panel (which indicates an

incorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland in

my lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case life

just got more interesting.

I don't know why but I don't find either prospect particularly alarming. I guess if you're

already screwed putting a name on it is just a technicality even if a wanted one.

Wild speculative opinions welcomed. When it comes to rarer stuff experienced patients

are better sources of info than doctors many times.

Cheers,

Darrin

[Guest guest]

Thanks Matt.

Cheers,

Darrin

To: Neurosarcoidosis From: dmatt1960@...Date: Thu, 29 Apr 2010 16:35:44 -0700Subject: Re: Question about type of physician

I take to both a rhuematologist & a neurologist. The rhumetologist manages her prdnisone & use to take care of the methotrexate. He now confers with the neurologist to manage her cellcept. Her neurosarcoidosis is in the brain and shows up as granulomas in the brain. They are attempting management with the cellcept. Matt

Subject: Question about type of physicianTo: "neurosarcoidosis " <neurosarcoidosis >Date: Tuesday, April 27, 2010, 3:35 PM

I've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

[Guest guest]

You are most welcome Darrin, I hope that the information was helpful. Matt

Subject: Question about type of physicianTo: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Date: Tuesday, April 27, 2010, 3:35 PM

I've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and

theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

[Guest guest]

Darrin, I'm curious as to why the PET scan rather than a lung biopsy. I'm a few years out from diagnosis, so maybe that's the latest thing. The nice thing about the lung biopsy was that they could also rule out other weird stuff like fungus & bacterial sources.

Ramblin' RoseModerator

To: neurosarcoidosis From: gphx@...Date: Tue, 27 Apr 2010 12:35:12 -0700Subject: Question about type of physician

I've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more.

[Guest guest]

Hi Rose,They said the CT did not present a clear image for whatever reasonand the presentation of the granulomas was not classical.Just because we have one condition doesn't mean we can't have others.I lived in the Southwest for a long time and spent a lot of time in mines.It'd be unlikely I didn't get Valley Fever at some point and it too causesodd growths in the lungs. Because of bats histoplasmosis is also a possibility. They may be seeing the results of several things.Or they may be seeing sarcoidal carcinoma as well. My paraneoplastic panels were negative. Those are generally positive ifones neuro symptoms are a reaction to cancer so I'd think cancer wasn'tin the picture but only time will tell. It seems classic for people to betold they either have sarc or cancer and sometimes to bounce back andforth before settling on a dx. Only time will tell.Cheers,DarrinTo: neurosarcoidosis From: mamadogrose@...Date: Fri, 30 Apr 2010 22:28:58 -0400Subject: RE: Question about type of physician

Darrin, I'm curious as to why the PET scan rather than a lung biopsy. I'm a few years out from diagnosis, so maybe that's the latest thing. The nice thing about the lung biopsy was that they could also rule out other weird stuff like fungus & bacterial sources.

Ramblin' RoseModerator

To: neurosarcoidosis From: gphx@...Date: Tue, 27 Apr 2010 12:35:12 -0700Subject: Question about type of physician

I've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more.

[Guest guest]

Darrin, I'm one of those folks who initially had no symptoms, but had enlarged hilar nodes on a chest xray. I had a biopsy to confirm it was sarc and not "something serious like lymphoma." Ha! That was in 1994. In 1999 I had bilateral hearing loss & my first Bell's palsy, all within 6 months. This was all attributed to viruses, I got hearing aids & went on with my life. A year later I had sudden onset of flu-like symptoms, with major fatigue. Over the next few months I had a variety of interesting symptoms, all blamed on--guess what?--a virus! I felt like I had cobwebs on my face, then pain behind my eye, balance problems, muscle weakness, numbness of feet, still severe fatigue (lost 35# as too tired to eat; took all my energy to make it through work), tremors. At that point I insisted on a neuro consult & was very fortunate to hit the jackpot the first time! When he heard that I had known sarc & saw my hearing aids, he knew. By that time I was having some bad coughing fits, but I had cough-variant asthma & took b/p meds that caused cough, so I didn't think much of it (and neither did my PCP). Again it was my neuro who noticed the cough & ordered a cxr. By then I had not only granulomas in my lungs, but some scarring & collapse of one lobe. A pulmonologist did the lung biopsy, a pretty easy experience from my memory! I had Versed & Demerol, plus he used an ointment with cocaine to lube my nose. The nurses said that afterward I kept saying, "I had cocaine! I had cocaine!" I took Pred & Imuran for 3 years, then Methotrexate for 2 more. The cough cleared up, but the xray never improved. Some of my other symptoms improved, like the tremors & weird facial symptoms, but I have quite a bit of residual damage--peripheral neuropathy, memory problems, still the fatigue, balance issues, vertigo, hearing loss & shortness of breath. I've been remission for about 3 years. I don't dwell on the possibility of recurrence, but I do pay attention to any unusual symptoms. I see my local neuro & pulmo twice a year & a sarc doc at the Indiana U. Med Ctr twice a year. I also see a cardiologist yearly for some funky heart things, although so far nobody believes it's sarc-related.

So that's my story & I'm stickin' to it (or as much of it as I can remember!).

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: neurosarcoidosis From: gphx@...Date: Sat, 1 May 2010 03:07:00 -0700Subject: RE: Question about type of physician

Hi Rose,They said the CT did not present a clear image for whatever reasonand the presentation of the granulomas was not classical.Just because we have one condition doesn't mean we can't have others.I lived in the Southwest for a long time and spent a lot of time in mines.It'd be unlikely I didn't get Valley Fever at some point and it too causesodd growths in the lungs. Because of bats histoplasmosis is also a possibility. They may be seeing the results of several things.Or they may be seeing sarcoidal carcinoma as well. My paraneoplastic panels were negative. Those are generally positive ifones neuro symptoms are a reaction to cancer so I'd think cancer wasn'tin the picture but only time will tell. It seems classic for people to betold they either have sarc or cancer and sometimes to bounce back andforth before settling on a dx. Only time will tell.Cheers,Darrin

To: neurosarcoidosis From: mamadogrose@...Date: Fri, 30 Apr 2010 22:28:58 -0400Subject: RE: Question about type of physician

Darrin, I'm curious as to why the PET scan rather than a lung biopsy. I'm a few years out from diagnosis, so maybe that's the latest thing. The nice thing about the lung biopsy was that they could also rule out other weird stuff like fungus & bacterial sources.

Ramblin' RoseModerator

To: neurosarcoidosis From: gphx@...Date: Tue, 27 Apr 2010 12:35:12 -0700Subject: Question about type of physicianI've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more.

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more.

[Guest guest]

That sounds so familiar. I still have facial tremors once in a while.Previously I'd have tremors in three major muscle groups at one time.I had a myoclonic jerk in my arm too. Massive fatigue, confusion,and the stiffness of spasticity too. I've had several episodes in lifeof severe difficulty walking including a recent period where I had tothink about and will each individual step. My arms and legs are veryweak, giving out really easily. The muscle is there, they just don'tlike to do what I tell them or for very long. After a walk or when I sleep my feet are numb, burn, and tingle all at the same time. Myhands do too.Peripheral neuropathy or small fiber neuropathy seems to me to bejust what it is since my brain, cervical, and lumbar mris and eegsall came out clean. The neuro told me the ones I was given don'tcatch pn or sfn. If I don't have neurosarcoidosis they have a lot of things left toexplain! Occam's Razor says the simplest explanation is the bestand the best at this time is neurosarc.Thanks again for sharing your story which is so much like mine.Cheers,DarrinTo: neurosarcoidosis From: mamadogrose@...Date: Mon, 3 May 2010 00:59:29 -0400Subject: RE: Question about type of physician

Darrin, I'm one of those folks who initially had no symptoms, but had enlarged hilar nodes on a chest xray. I had a biopsy to confirm it was sarc and not "something serious like lymphoma." Ha! That was in 1994. In 1999 I had bilateral hearing loss & my first Bell's palsy, all within 6 months. This was all attributed to viruses, I got hearing aids & went on with my life. A year later I had sudden onset of flu-like symptoms, with major fatigue. Over the next few months I had a variety of interesting symptoms, all blamed on--guess what?--a virus! I felt like I had cobwebs on my face, then pain behind my eye, balance problems, muscle weakness, numbness of feet, still severe fatigue (lost 35# as too tired to eat; took all my energy to make it through work), tremors. At that point I insisted on a neuro consult & was very fortunate to hit the jackpot the first time! When he heard that I had known sarc & saw my hearing aids, he knew. By that time I was having some bad coughing fits, but I had cough-variant asthma & took b/p meds that caused cough, so I didn't think much of it (and neither did my PCP). Again it was my neuro who noticed the cough & ordered a cxr. By then I had not only granulomas in my lungs, but some scarring & collapse of one lobe. A pulmonologist did the lung biopsy, a pretty easy experience from my memory! I had Versed & Demerol, plus he used an ointment with cocaine to lube my nose. The nurses said that afterward I kept saying, "I had cocaine! I had cocaine!" I took Pred & Imuran for 3 years, then Methotrexate for 2 more. The cough cleared up, but the xray never improved. Some of my other symptoms improved, like the tremors & weird facial symptoms, but I have quite a bit of residual damage--peripheral neuropathy, memory problems, still the fatigue, balance issues, vertigo, hearing loss & shortness of breath. I've been remission for about 3 years. I don't dwell on the possibility of recurrence, but I do pay attention to any unusual symptoms. I see my local neuro & pulmo twice a year & a sarc doc at the Indiana U. Med Ctr twice a year. I also see a cardiologist yearly for some funky heart things, although so far nobody believes it's sarc-related.

So that's my story & I'm stickin' to it (or as much of it as I can remember!).

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: neurosarcoidosis From: gphx@...Date: Sat, 1 May 2010 03:07:00 -0700Subject: RE: Question about type of physician

Hi Rose,They said the CT did not present a clear image for whatever reasonand the presentation of the granulomas was not classical.Just because we have one condition doesn't mean we can't have others.I lived in the Southwest for a long time and spent a lot of time in mines.It'd be unlikely I didn't get Valley Fever at some point and it too causesodd growths in the lungs. Because of bats histoplasmosis is also a possibility. They may be seeing the results of several things.Or they may be seeing sarcoidal carcinoma as well. My paraneoplastic panels were negative. Those are generally positive ifones neuro symptoms are a reaction to cancer so I'd think cancer wasn'tin the picture but only time will tell. It seems classic for people to betold they either have sarc or cancer and sometimes to bounce back andforth before settling on a dx. Only time will tell.Cheers,Darrin

To: neurosarcoidosis From: mamadogrose (AT) hotmail (DOT) comDate: Fri, 30 Apr 2010 22:28:58 -0400Subject: RE: Question about type of physician

Darrin, I'm curious as to why the PET scan rather than a lung biopsy. I'm a few years out from diagnosis, so maybe that's the latest thing. The nice thing about the lung biopsy was that they could also rule out other weird stuff like fungus & bacterial sources.

Ramblin' RoseModerator

To: neurosarcoidosis From: gphx@...Date: Tue, 27 Apr 2010 12:35:12 -0700Subject: Question about type of physicianI've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

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[Guest guest]

Rose,Are you off all meds now?  I'm so glad you are feeling better, and it's good to hear from you again.  Blessings, Marla

 

Darrin, I'm one of those folks who initially had no symptoms, but had enlarged hilar nodes on a chest xray.  I had a biopsy to confirm it was sarc and not " something serious like lymphoma. "   Ha!  That was in 1994.  In 1999 I had bilateral hearing loss & my first Bell's palsy, all within 6 months. This was all attributed to viruses, I got hearing aids & went on with my life.  A year later I had sudden onset of flu-like symptoms, with major fatigue.  Over the next few months I had a variety of interesting symptoms, all blamed on--guess what?--a virus!  I felt like I had cobwebs on my face, then pain behind my eye, balance problems, muscle weakness, numbness of feet, still severe fatigue (lost 35# as too tired to eat; took all my energy to make it through work), tremors.  At that point I insisted on a neuro consult & was very fortunate to hit the jackpot the first time!  When he heard that I had known sarc & saw my hearing aids, he knew.  By that time I was having some bad coughing fits, but I had cough-variant asthma & took b/p meds that caused cough, so I didn't think much of it (and neither did my PCP).   Again it was my neuro who noticed the cough & ordered a cxr.  By then I had not only granulomas in my lungs, but some scarring & collapse of one lobe.  A pulmonologist did the lung biopsy, a pretty easy experience from my memory!  I had Versed & Demerol, plus he used an ointment with cocaine to lube my nose.  The nurses said that afterward I kept saying, " I had cocaine!  I had cocaine! "   I took Pred & Imuran for 3 years, then Methotrexate for 2 more.  The cough cleared up, but the xray never improved.  Some of my other symptoms improved, like the tremors & weird facial symptoms, but I have quite a bit of residual damage--peripheral neuropathy, memory problems, still the fatigue, balance issues, vertigo, hearing loss & shortness of breath.  I've been remission for about 3 years.  I don't dwell on the possibility of recurrence, but I do pay attention to any unusual symptoms.  I see my local neuro & pulmo twice a year &  a sarc doc at the Indiana U. Med Ctr twice a year.  I also see a cardiologist yearly for some funky heart things, although so far nobody believes it's sarc-related.

 

So that's my story & I'm stickin' to it (or as much of it as I can remember!). 

Ramblin' RoseModerator

 

" How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these. "

 

~ Washington Carver  

To: neurosarcoidosis From: gphx@...Date: Sat, 1 May 2010 03:07:00 -0700

Subject: RE: Question about type of physician

Hi Rose,They said the CT did not present a clear image for whatever reasonand the presentation of the granulomas was not classical.Just because we have one condition doesn't mean we can't have others.

I lived in the Southwest for a long time and spent a lot of time in mines.It'd be unlikely I didn't get Valley Fever at some point and it too causesodd growths in the lungs. Because of bats histoplasmosis is also a

possibility. They may be seeing the results of several things.Or they may be seeing sarcoidal carcinoma as well. My paraneoplastic panels were negative. Those are generally positive ifones neuro symptoms are a reaction to cancer so I'd think cancer wasn't

in the picture but only time will tell. It seems classic for people to betold they either have sarc or cancer and sometimes to bounce back andforth before settling on a dx. Only time will tell.Cheers,

Darrin

To: neurosarcoidosis From: mamadogrose@...Date: Fri, 30 Apr 2010 22:28:58 -0400

Subject: RE: Question about type of physician 

Darrin, I'm curious as to why the PET scan rather than a lung biopsy.  I'm a few years out from diagnosis, so maybe that's the latest thing.  The nice thing about the lung biopsy was that they could also rule out other weird stuff like fungus & bacterial sources.

Ramblin' RoseModerator

  

To: neurosarcoidosis From: gphx@...Date: Tue, 27 Apr 2010 12:35:12 -0700

Subject: Question about type of physicianI've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matched

Sjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. I

have an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades.

 I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and they

want to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates an

incorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. 

I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patients

are better sources of info than doctors many times. Cheers,Darrin

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[Guest guest]

I can so relate to you Rose. It sounds so much like how it was determined that I had NS. I too do not dwell on the chance it will return, not that is has gone away. I am living life to the best I can. Taking my meds, visits with my Docs. and doing as much as I can myself.

I just needed to tell you.

Hey I am woman hear me roar.

Jackie

Question about type of physicianI've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

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[Guest guest]

Rrrrrrroowwwwwwrrrrrrr!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Mon, 3 May 2010 11:32:40 -0500Subject: Re: Question about type of physician

I can so relate to you Rose. It sounds so much like how it was determined that I had NS. I too do not dwell on the chance it will return, not that is has gone away. I am living life to the best I can. Taking my meds, visits with my Docs. and doing as much as I can myself.

I just needed to tell you.

Hey I am woman hear me roar.

Jackie

Question about type of physicianI've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

Hotmail has tools for the New Busy. Search, chat and e-mail from your inbox. Learn more.

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[Guest guest]

Hey, Marla. I'm not taking immune-suppressants/modifiers. I'm still taking a lot of meds to deal with the residual symptoms, as well as my b/p, cholesterol, etc. I'm sitting here watching thunderstorms hit the area & remembering the devastating Palm Sunday tornadoes of 45 years ago (I think). So many survived, but with terrible losses. I feel like one of those fortunates--escaped annilihation (sp?) but have enduring daily reminders.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Mon, 3 May 2010 09:58:59 -0600Subject: Re: Question about type of physician

Rose,Are you off all meds now? I'm so glad you are feeling better, and it's good to hear from you again. Blessings, Marla

Darrin, I'm one of those folks who initially had no symptoms, but had enlarged hilar nodes on a chest xray. I had a biopsy to confirm it was sarc and not "something serious like lymphoma." Ha! That was in 1994. In 1999 I had bilateral hearing loss & my first Bell's palsy, all within 6 months. This was all attributed to viruses, I got hearing aids & went on with my life. A year later I had sudden onset of flu-like symptoms, with major fatigue. Over the next few months I had a variety of interesting symptoms, all blamed on--guess what?--a virus! I felt like I had cobwebs on my face, then pain behind my eye, balance problems, muscle weakness, numbness of feet, still severe fatigue (lost 35# as too tired to eat; took all my energy to make it through work), tremors. At that point I insisted on a neuro consult & was very fortunate to hit the jackpot the first time! When he heard that I had known sarc & saw my hearing aids, he knew. By that time I was having some bad coughing fits, but I had cough-variant asthma & took b/p meds that caused cough, so I didn't think much of it (and neither did my PCP). Again it was my neuro who noticed the cough & ordered a cxr. By then I had not only granulomas in my lungs, but some scarring & collapse of one lobe. A pulmonologist did the lung biopsy, a pretty easy experience from my memory! I had Versed & Demerol, plus he used an ointment with cocaine to lube my nose. The nurses said that afterward I kept saying, "I had cocaine! I had cocaine!" I took Pred & Imuran for 3 years, then Methotrexate for 2 more. The cough cleared up, but the xray never improved. Some of my other symptoms improved, like the tremors & weird facial symptoms, but I have quite a bit of residual damage--peripheral neuropathy, memory problems, still the fatigue, balance issues, vertigo, hearing loss & shortness of breath. I've been remission for about 3 years. I don't dwell on the possibility of recurrence, but I do pay attention to any unusual symptoms. I see my local neuro & pulmo twice a year & a sarc doc at the Indiana U. Med Ctr twice a year. I also see a cardiologist yearly for some funky heart things, although so far nobody believes it's sarc-related. So that's my story & I'm stickin' to it (or as much of it as I can remember!).

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: neurosarcoidosis From: gphx@...Date: Sat, 1 May 2010 03:07:00 -0700Subject: RE: Question about type of physicianHi Rose,They said the CT did not present a clear image for whatever reasonand the presentation of the granulomas was not classical.Just because we have one condition doesn't mean we can't have others.I lived in the Southwest for a long time and spent a lot of time in mines.It'd be unlikely I didn't get Valley Fever at some point and it too causesodd growths in the lungs. Because of bats histoplasmosis is also a possibility. They may be seeing the results of several things.Or they may be seeing sarcoidal carcinoma as well. My paraneoplastic panels were negative. Those are generally positive ifones neuro symptoms are a reaction to cancer so I'd think cancer wasn'tin the picture but only time will tell. It seems classic for people to betold they either have sarc or cancer and sometimes to bounce back andforth before settling on a dx. Only time will tell.Cheers,Darrin

To: neurosarcoidosis From: mamadogrose@...Date: Fri, 30 Apr 2010 22:28:58 -0400Subject: RE: Question about type of physician

Darrin, I'm curious as to why the PET scan rather than a lung biopsy. I'm a few years out from diagnosis, so maybe that's the latest thing. The nice thing about the lung biopsy was that they could also rule out other weird stuff like fungus & bacterial sources.

Ramblin' RoseModerator

To: neurosarcoidosis From: gphx@...Date: Tue, 27 Apr 2010 12:35:12 -0700Subject: Question about type of physicianI've been operating under the assumption I have ms and went to see an ms specialist.When I realized the fact I've had dry eye and mouth for a decade or more matchedSjogrens I added it to the list. Then I slowly realized neurosarc explains all those things. Tests have thus far not been positive for ms. My specialist sent me for a lung CT todayand I'm aware not all people with neurosarc have lung issues though it is common. Ihave an ACE level of 95 (it was 85 on a test a month or so before so it's rising). Mycalcium level is very high normal which is unusual because I'm lactose intolerant andhave rarely eaten dairy in the past couple decades. I was going to ask what type of physician I should have my ms physician refer me tobut that was answered as they called back with the results of the CT as I was typingthis. Apparently I have some kind of growths such as granulomas in my lungs and theywant to do a PET scan now to see if its sarc or cancer. Apparently healthy people canhave granulomas too but it is unusual. With neuro symptoms that match, a negative paraneoplastic panel (which indicates anincorrect autoimmune response to cancer), dry mouth, dry eyes, and a saliva gland inmy lip swelled like a hard bb I'm still thinking neurosarc but who knows. In any case lifejust got more interesting. I don't know why but I don't find either prospect particularly alarming. I guess if you'realready screwed putting a name on it is just a technicality even if a wanted one. Wild speculative opinions welcomed. When it comes to rarer stuff experienced patientsare better sources of info than doctors many times. Cheers,Darrin

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