Re: New Member needs Advice

[Guest guest]

I would try to set an appointment at a specialty hospital like cleveland clinic or mayo clinic or perhaps ann arbor. good luck and be strong

Subject: New Member needs AdviceTo: Neurosarcoidosis Date: Sunday, March 14, 2010, 11:52 AM

Hello,I was recently diagnosed with Sarcoidosis and could use some advice on how to determine I am getting the correct treatment. My recent history included a severe bout with the flu in November followed by vague symptoms of not feeling well, muscle aches and cramping, waking up feeling like I'm suffocating, then achilles tendon stiffness, burning sensation in my feet/ankles which then developed into a hugely swollen right ankle, followed by the left and then aching elbows and erythma nodosum lesions on my arms...which is what led to my diagnosis via a chest Xray. My long term history (12+ years) includes elevated liver enzymes (currently slightly elevated again), kidney stones, rash-type reaction to the sun, a blocked salivary gland, severe headaches (enough to make me go to the After Hours clinic, which they diagnosed... after a negative CT Scan...as Hypertension) with neck pain, blurry vision, change in sleep habits, chest (including

occasional fluttering feeling) and right upper quadrant pain. All of this was spread out over the years,and came and went, so honestly I just accepted the aches and pains as part of getting older until the last month or so. I can not fault my doctor, in that they reached a diagnosis in something under 2 weeks. However, I was sent home with a 6 day course of prednisone, which almost immediately cleared up the joint pain and shortness of breath, literally making me feel 20 years younger...until I was off it for about 3-4 days. : (My problem and concern is that they have left me somewhat adrift. When I called to indicated that my ankles and feet were starting to hurt and swell again, I was told they were able to get an appointment with a Rheumatologist for later next month. At this point I am on no medications. ..well, except for Friday night, when I took a 8mgs of prednisone that was prescribed for my husband because I had been practically

bedridden for the two prior days. Again, the prednisone was like a miracle. Yesterday I felt very good, today I am starting to feel the chest and joint pain coming back. I know that I can not last until next month for someone to develop a treatment plan for me. I do have an appointment on Tuesday for a "routine physical" with my regular doctor and I have made a 3 page summary of what I have learned so far about my condition..includin g links to the ACCESS study, helpful resource sites, dietary information from the Life Extension site and a list of doctors. I am somewhat disappointed that I needed to do this...in my mind I feel it is the doctor that should be giving me this information. So Tuesday, besides discussing my current issues (chest pain, shortness of breath, weight loss and joint pain), I am also going to insist that she do a consult with one of the Sarc specialists on my list and develop a treatment plan, or get me in immediately with

a doctor that has at least had some experience treating the disease.Between being treated for gout and cellulitis, my Office Visits alone for the past two weeks have been upwards of $500 and I have yet to see the bill for all of the tests, ultrasound and Xray. I'm bracing myself for the "sticker shock" to come!Am I over-reacting or expecting too much from a General Practitioner? My referral is to a Rheumatologist, I suppose because of my joint involvement, but should I be seeing a Pulmonary specialist instead? How do I ensure that the "specialist" I'm sent to is actually able to monitor and treat my condition? What tests should I expect to be run? Has anyone had any success dealing with this disease with dietary changes and supplements? How concerned should I be about this, given the numerous symptoms I've had over the years?Thanks for any advice you can give...and for giving me the opportunity to vent a little. : )Deb

Z.Michigan

[Guest guest]

Rheumatologists are actually a great choice to help you with your sarcoidosis. They are usually very well versed in using the various drugs that we need. Since you already have done some prednisone and the issues come back just as soon as you stop it-- should tell them you are going to need something along the lines of Imuran, Arava, Cellcept, Plaquenil, Methotrexate or the big guns if those don't help-- Enbrel, Humira, Remicade-- and there are a couple of new ones that I'm not familiar with.

www.arthritistoday.org has a wonderful Drug guide-- it explains the DMARDS--Disease Modifying AntiRheumatic Drugs, the BRM's-- Biological Response Modifiers, as well as alternative anti-inflamatories.

What needs to happen is that they will put you on a medication-- give it a few weeks to see if it'll help, and if it doesn't - you wean off it, and try the next one. You only want to start one medication at a time, so that if you have any adverse side effects- you'll know what is causing it.

Sarcoidosis is proven to come back most often after we've been treated with prednisone. The pred seems to "mask" the symptons, instead of truly lowering the systemic inflammation.

I believe it was you that asked about the "inside" the bone pain-- and yes, that is sarcoidosis. What has worked best for me is a natural mineral-- MSM== I use MSM powder religiously, and you need to be on Milk Thistle also = as it keeps the liver from becoming toxic. You can get both at a health food store-- or PUREMSM.com.

Pred is great for short periods of time-- but to spend years on it-- is bad news. So talk with the Rheumi about "steroid sparing" meds.

The Rheumi can order various lab tests that will show if you have other issues going on besides sarcoidosis. I know you spent 7 yrs with the MS diagnosis== that is not uncommon...

MS has specific protein markers in spinal fluid that ARE NOT present in sarcoidosis. So hopefully, he'll reconfirm with a spinal tap.

Make sure you are getting plenty of rest, plenty of fluids-- we run low grade systemic fevers as our immune system is thinking our cells are foreign, and we sit at the edge of being dehydrated all the time. Caffeine, sodas, high fructose corn syrup sweetened juices all need to go the wayside. Alcohol also dehydrates-- so be prudent.

Hopefully they've done ACE tests, (angioconverting enzymes) which just says that you have systemic inflammation going on. What happens is that your docs rule out all the other autoimmune diseases, and then come up with NS. If you have proven sarc in your lungs-- a pulmonologist will do PFT (pulmonary function tests); possibly a bronchoscopy so that they can take some biopsy from the lungs, and get a real diagnosis.

Start with the Rheumi and let them coordinate with the other docs you may need. As far as the next month-- you may want to talk to the doc about staying on the pred- but do be aware that if you are on it when you see the Rheumi, you may get some false blood test reading because of pred ability to mask problems.

If you are having problems walking or doing the normal activities of daily living (ADL's) make sure you tell your doc-- that way they can check to see if you are desaturating on exercise. The challenge is that pulmonologists tend to look at the tests and they see that "when corrected for lung volume" that your DLCO (Diffuse Lung Capacity) is low when it stands alone, but on correction for total lung volume, it may be ok-- but it isn't! If it is low stand alone- that is significant for lung health and can show that you have developed some pulmonary fibrosis that is making it so tha tyour lungs don't clear out the carbon dioxide correctly. When this happens, you get the numb hands and feet and extremities! It is a signal that you may very well need supplemental oxygen if you are out doing something active.

Many times we get the brain fog from vasculitis -- and it can be intermittent depending on where the inflammation is pressing on the brain. We hafve to make sure that if we show signs of a stroke, or have TIA(transient Ischemic Attacks) that we get in and get it checked out at the ER. Early treatment during that first "golden hour" can make it so that you don't have permanent damage.

www.sarcoidosissharma.com is a great site that has the tests and such that you'll need to have evaluated.

I'm sorry you had to find us-- but glad you did! You will get alot of support here- we've got a big base of people on the same journey-- willing to share their experiences. Right now, our moderators and owners are all in flare- so we are a bit slower to answer- but someone will answer!!

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Mon, March 15, 2010 8:30:55 AMSubject: Re: New Member needs Advice

I would try to set an appointment at a specialty hospital like cleveland clinic or mayo clinic or perhaps ann arbor. good luck and be strong

From: wiscnorthwind <riversedge@localnet .com>Subject: New Member needs AdviceTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, March 14, 2010, 11:52 AM

Hello,I was recently diagnosed with Sarcoidosis and could use some advice on how to determine I am getting the correct treatment. My recent history included a severe bout with the flu in November followed by vague symptoms of not feeling well, muscle aches and cramping, waking up feeling like I'm suffocating, then achilles tendon stiffness, burning sensation in my feet/ankles which then developed into a hugely swollen right ankle, followed by the left and then aching elbows and erythma nodosum lesions on my arms...which is what led to my diagnosis via a chest Xray. My long term history (12+ years) includes elevated liver enzymes (currently slightly elevated again), kidney stones, rash-type reaction to the sun, a blocked salivary gland, severe headaches (enough to make me go to the After Hours clinic, which they diagnosed... after a negative CT Scan...as Hypertension) with neck pain, blurry vision, change in sleep habits, chest (including

occasional fluttering feeling) and right upper quadrant pain. All of this was spread out over the years,and came and went, so honestly I just accepted the aches and pains as part of getting older until the last month or so. I can not fault my doctor, in that they reached a diagnosis in something under 2 weeks. However, I was sent home with a 6 day course of prednisone, which almost immediately cleared up the joint pain and shortness of breath, literally making me feel 20 years younger...until I was off it for about 3-4 days. : (My problem and concern is that they have left me somewhat adrift. When I called to indicated that my ankles and feet were starting to hurt and swell again, I was told they were able to get an appointment with a Rheumatologist for later next month. At this point I am on no medications. ..well, except for Friday night, when I took a 8mgs of prednisone that was prescribed for my husband because I had been practically

bedridden for the two prior days. Again, the prednisone was like a miracle. Yesterday I felt very good, today I am starting to feel the chest and joint pain coming back. I know that I can not last until next month for someone to develop a treatment plan for me. I do have an appointment on Tuesday for a "routine physical" with my regular doctor and I have made a 3 page summary of what I have learned so far about my condition..includin g links to the ACCESS study, helpful resource sites, dietary information from the Life Extension site and a list of doctors. I am somewhat disappointed that I needed to do this...in my mind I feel it is the doctor that should be giving me this information. So Tuesday, besides discussing my current issues (chest pain, shortness of breath, weight loss and joint pain), I am also going to insist that she do a consult with one of the Sarc specialists on my list and develop a treatment plan, or get me in immediately with

a doctor that has at least had some experience treating the disease.Between being treated for gout and cellulitis, my Office Visits alone for the past two weeks have been upwards of $500 and I have yet to see the bill for all of the tests, ultrasound and Xray. I'm bracing myself for the "sticker shock" to come!Am I over-reacting or expecting too much from a General Practitioner? My referral is to a Rheumatologist, I suppose because of my joint involvement, but should I be seeing a Pulmonary specialist instead? How do I ensure that the "specialist" I'm sent to is actually able to monitor and treat my condition? What tests should I expect to be run? Has anyone had any success dealing with this disease with dietary changes and supplements? How concerned should I be about this, given the numerous symptoms I've had over the years?Thanks for any advice you can give...and for giving me the opportunity to vent a little. : )Deb

Z.Michigan

[Guest guest]

Thank you Bill. I did make an appointment this morning with a Pulmonary Dr.

that was listed on one of the Sarcoidosis sites. I'm hoping it's a step in the

right direction.

Deb

>

> I would try to set an appointment at a specialty hospital like cleveland

clinic or mayo clinic or perhaps ann arbor.  good luck and be strong

>

> TRIMMED PREVIOUS POST <

[Guest guest]

Tracie,

Thank you for all of your good advice. At least I know I'm on the right track

with diet changes and things. There is so much conflicting information that

it's hard to know if you're doing the right thing or not.

For example, my Vitamin D was tested and came back in the " insufficient " range,

but not deficient...basically lower than it should be. In the past

(pre-diagnosis) I was taking a D3 supplement 2-3 times a week. I've since

stopped that because I read that Vitamin D can be a problem for us. I just read

your post about D3 and now wonder if the supplement I was taking added to my

problem and caused the flare???

It's funny how you think you're doing things to help yourself...like eating low

or no-fat dairy for the calcium content (and again Vitamin D), etc...and later

finding out you may actually be hurting yourself in the long run.

Anyway, I was able to get an appointment with a Pulmonary specialist in a few

weeks, so will start there and then decide if I want to keep the appointment

with the current Rheumatologist or go to one that has experience treating this

condition.

Thank you again...the moral support available on this site is invaluable.

Oh, and it wasn't me that asked about the bone pain, but I made note of the MSM

since my joints have been aching for weeks now. And I wasn't diagnosed with MS,

so I think you may have mixed my post up with someone else...hopefully they'll

see your response to their questions here.

Be well,

Deb Z.

Michigan

>

> Rheumatologists are actually a great choice to help you with your

sarcoidosis...

> TRIMMED PREVIOUS POSTS <

[Guest guest]

I will agree with that. One of the best things that Jens neurologist did was to get her a Rheumatologist. He has been able to monitor her medicines like the cellcept and the prdnisone. He is also the doctor that has told us if he feels he cant do what needs to be done for jenny he will send us to s Hopkins. Matt

From: wiscnorthwind <riversedge@localnet .com>Subject: New Member needs AdviceTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, March 14, 2010, 11:52 AM

Hello,I was recently diagnosed with Sarcoidosis and could use some advice on how to determine I am getting the correct treatment. My recent history included a severe bout with the flu in November followed by vague symptoms of not feeling well, muscle aches and cramping, waking up feeling like I'm suffocating, then achilles tendon stiffness, burning sensation in my feet/ankles which then developed into a hugely swollen right ankle, followed by the left and then aching elbows and erythma nodosum lesions on my arms...which is what led to my diagnosis via a chest Xray. My long term history (12+ years) includes elevated liver enzymes (currently slightly elevated again), kidney stones, rash-type reaction to the sun, a blocked salivary gland, severe headaches (enough to make me go to the After Hours clinic, which they diagnosed... after a negative CT Scan...as Hypertension) with neck pain, blurry vision, change in sleep habits, chest (including

occasional fluttering feeling) and right upper quadrant pain. All of this was spread out over the years,and came and went, so honestly I just accepted the aches and pains as part of getting older until the last month or so. I can not fault my doctor, in that they reached a diagnosis in something under 2 weeks. However, I was sent home with a 6 day course of prednisone, which almost immediately cleared up the joint pain and shortness of breath, literally making me feel 20 years younger...until I was off it for about 3-4 days. : (My problem and concern is that they have left me somewhat adrift. When I called to indicated that my ankles and feet were starting to hurt and swell again, I was told they were able to get an appointment with a Rheumatologist for later next month. At this point I am on no medications. ..well, except for Friday night, when I took a 8mgs of prednisone that was prescribed for my husband because I had been practically

bedridden for the two prior days. Again, the prednisone was like a miracle. Yesterday I felt very good, today I am starting to feel the chest and joint pain coming back. I know that I can not last until next month for someone to develop a treatment plan for me. I do have an appointment on Tuesday for a "routine physical" with my regular doctor and I have made a 3 page summary of what I have learned so far about my condition..includin g links to the ACCESS study, helpful resource sites, dietary information from the Life Extension site and a list of doctors. I am somewhat disappointed that I needed to do this...in my mind I feel it is the doctor that should be giving me this information. So Tuesday, besides discussing my current issues (chest pain, shortness of breath, weight loss and joint pain), I am also going to insist that she do a consult with one of the Sarc specialists on my list and develop a treatment plan, or get me in immediately with

a doctor that has at least had some experience treating the disease.Between being treated for gout and cellulitis, my Office Visits alone for the past two weeks have been upwards of $500 and I have yet to see the bill for all of the tests, ultrasound and Xray. I'm bracing myself for the "sticker shock" to come!Am I over-reacting or expecting too much from a General Practitioner? My referral is to a Rheumatologist, I suppose because of my joint involvement, but should I be seeing a Pulmonary specialist instead? How do I ensure that the "specialist" I'm sent to is actually able to monitor and treat my condition? What tests should I expect to be run? Has anyone had any success dealing with this disease with dietary changes and supplements? How concerned should I be about this, given the numerous symptoms I've had over the years?Thanks for any advice you can give...and for giving me the opportunity to vent a little. : )Deb

Z.Michigan