new to group- introduction - have questions

[Guest guest]

Hi Everyone! My name is Jodi. I am 28 and live in Central Florida. I

was diagnosed with sarcoidosis in August 2006 after a year of

torture from testing and 2 surgeries. Like many others I had CT's

that showed abnormal lymph nodes and pulmonary nodules and then I

had a positive PET scan. Of course they could not rule out cancer so

I went through 2 biopsy surgeries. Finally I was told all of my

crazy and horrible symptoms were due to sarcoidosis but in the same

breath most of my doctors told me that sarcoidosis did not cause any

symptoms and I should be fine. From there I have been searching and

searching for new doctors who know more about this disease and who

will take me seriously. I found a good pulmonologist who informed me

that my lung involvement is actually so far limited to just my

airways and thankfully I do not have any scarring as of yet. That

was good news. All through the testing and everything else going on

I had been suffering with weird symptoms. Dizziness-not where I felt

that I would fall but where it felt that the floor was flying up at

me. Horrible loud ringing in my ears and hearing loss in just my

left ear. Out of the blue one day my right eye started dilating for

no reason whenever it feels like and still does so to this day. The

pain and tingling I get in my arms and legs and the neck pain

started getting worse and worse as well. I put it aside and

concentrated on my breathing issues and figured I should tackle one

thing at a time since I had such a hard time finding the one good

doctor. I couldn't take it any longer. I went to an eye doc to check

on that pupil and everything appeared ok except for the fact that I

now have borderline glaucoma. He suggested I see a neurologist so

reluctantly I took the name he suggested and made an appointment.

Wow, what a doctor! He was awesome! The most thorough and

compassionate doc I had seen yet for this disease and he seems to

know (or at least willing to investigate)about sarcoidosis. He did a

whole lot of tests and scheduled me for more MRI's that I will have

done tomorrow. He noticed from the exam that I have Bell's Palsy on

my right side of my face. Not a great amount that causes problems

but he definately noticed and after he pointed it out I really see

it now. I have no muscle tone on my right side and my eye is off

set. My glasses hide it enough that it's not really noticeable if

not pointed out. He also found that I am over 30% weaker on my right

side than I should be. I am right handed and should be 10% stronger

at least. I also have positive Babinski on right side. Does/Has

anyone else with neurosarcoidosis have/had this finding? The doctor

is very concerned about this and said he will have to do research to

find out what to do for me. He feels these finding are definately

brain related and not just nerve. My pulm did not want to start any

prednisone on me because I mysteriously gain and lose weight every 1-

2 weeks without any diet or exercise changes and I am overweight

already. I cannot really take the metho-type due to chronic low

WBC's so I am not sure what can be done. Any advice for newly

diagnosed? I try to do brain exercises and play puzzle games and

such but instead of getting easier they are getting harder I swear.

How does everyone cope? I am not able to work. I haven't been able

to for over a year. I am filing for disability. In appeals now.

Hopefully it won't be much longer but as we all know it can take

forever. This neuro has the MRI machines right at his office so I

will have the results quick. Hopefully treatments or options can

come quick as well. Take care! Jodi

[Guest guest]

Dear Jody,

What a story, again a woman with neurosarcoisosis, join the group! You

are welcome!

I can give you one advice, believe in yourself and find good doctors.

I think you find a good neurologist as you wrote " least willing to

investigate about sarcoidosis " , that's a good sign.

I will start in a couple of weeks with infliximab infusions. May be

you can ask your doctor if he knows this immuno therapy.If you cannot

treated with prednisolon or MTX, infliximab may be an solution . On

this moment it's registered for arthritis and Crohn disease but a few

studies are done already with sarcoidosis patients. The results are

hopeful. A couple of these ns-group members are on infliximab too. If

you want I can send you some medical articles about these treatment by

sarcoidosis.

Again, welcome to the neurosarc group and feel free to ask questions.

A lot of the members have neurosarcoidosis for so many years and are a

big support for each other.

A big hug from the Netherlands,

Yvonne

>

> Hi Everyone! My name is Jodi. I am 28 and live in Central Florida. I

> was diagnosed with sarcoidosis in August 2006 after a year of

> torture from testing and 2 surgeries. Like many others I had CT's

> that showed abnormal lymph nodes and pulmonary nodules and then I

> had a positive PET scan. Of course they could not rule out cancer so

> I went through 2 biopsy surgeries. Finally I was told all of my

> crazy and horrible symptoms were due to sarcoidosis but in the same

> breath most of my doctors told me that sarcoidosis did not cause any

> symptoms and I should be fine. From there I have been searching and

> searching for new doctors who know more about this disease and who

> will take me seriously. I found a good pulmonologist who informed me

> that my lung involvement is actually so far limited to just my

> airways and thankfully I do not have any scarring as of yet. That

> was good news. All through the testing and everything else going on

> I had been suffering with weird symptoms. Dizziness-not where I felt

> that I would fall but where it felt that the floor was flying up at

> me. Horrible loud ringing in my ears and hearing loss in just my

> left ear. Out of the blue one day my right eye started dilating for

> no reason whenever it feels like and still does so to this day. The

> pain and tingling I get in my arms and legs and the neck pain

> started getting worse and worse as well. I put it aside and

> concentrated on my breathing issues and figured I should tackle one

> thing at a time since I had such a hard time finding the one good

> doctor. I couldn't take it any longer. I went to an eye doc to check

> on that pupil and everything appeared ok except for the fact that I

> now have borderline glaucoma. He suggested I see a neurologist so

> reluctantly I took the name he suggested and made an appointment.

> Wow, what a doctor! He was awesome! The most thorough and

> compassionate doc I had seen yet for this disease and he seems to

> know (or at least willing to investigate)about sarcoidosis. He did a

> whole lot of tests and scheduled me for more MRI's that I will have

> done tomorrow. He noticed from the exam that I have Bell's Palsy on

> my right side of my face. Not a great amount that causes problems

> but he definately noticed and after he pointed it out I really see

> it now. I have no muscle tone on my right side and my eye is off

> set. My glasses hide it enough that it's not really noticeable if

> not pointed out. He also found that I am over 30% weaker on my right

> side than I should be. I am right handed and should be 10% stronger

> at least. I also have positive Babinski on right side. Does/Has

> anyone else with neurosarcoidosis have/had this finding? The doctor

> is very concerned about this and said he will have to do research to

> find out what to do for me. He feels these finding are definately

> brain related and not just nerve. My pulm did not want to start any

> prednisone on me because I mysteriously gain and lose weight every 1-

> 2 weeks without any diet or exercise changes and I am overweight

> already. I cannot really take the metho-type due to chronic low

> WBC's so I am not sure what can be done. Any advice for newly

> diagnosed? I try to do brain exercises and play puzzle games and

> such but instead of getting easier they are getting harder I swear.

> How does everyone cope? I am not able to work. I haven't been able

> to for over a year. I am filing for disability. In appeals now.

> Hopefully it won't be much longer but as we all know it can take

> forever. This neuro has the MRI machines right at his office so I

> will have the results quick. Hopefully treatments or options can

> come quick as well. Take care! Jodi

>

[Guest guest]

Yvonne, it's good to hear from you! I wish you would post a photo of your little one, along with the whole family. Good luck with the Remicade.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: new to group- introduction - have questionsDate: Tue, 22 May 2007 09:23:27 -0000

Dear Jody,What a story, again a woman with neurosarcoisosis, join the group! Youare welcome!I can give you one advice, believe in yourself and find good doctors.I think you find a good neurologist as you wrote "least willing toinvestigate about sarcoidosis", that's a good sign.I will start in a couple of weeks with infliximab infusions. May beyou can ask your doctor if he knows this immuno therapy.If you cannottreated with prednisolon or MTX, infliximab may be an solution . Onthis moment it's registered for arthritis and Crohn disease but a fewstudies are done already with sarcoidosis patients. The results arehopeful. A couple of these ns-group members are on infliximab too. Ifyou want I can send you some medical articles about these treatment bysarcoidosis.Again, welcome to the neurosarc group and feel free to ask questions.A lot of the members have neurosarcoidosis for so many years and are abig support for each other.A big hug from the Netherlands,Yvonne>> Hi Everyone! My name is Jodi. I am 28 and live in Central Florida. I > was diagnosed with sarcoidosis in August 2006 after a year of > torture from testing and 2 surgeries. Like many others I had CT's > that showed abnormal lymph nodes and pulmonary nodules and then I > had a positive PET scan. Of course they could not rule out cancer so > I went through 2 biopsy surgeries. Finally I was told all of my > crazy and horrible symptoms were due to sarcoidosis but in the same > breath most of my doctors told me that sarcoidosis did not cause any > symptoms and I should be fine. From there I have been searching and > searching for new doctors who know more about this disease and who > will take me seriously. I found a good pulmonologist who informed me > that my lung involvement is actually so far limited to just my > airways and thankfully I do not have any scarring as of yet. That > was good news. All through the testing and everything else going on > I had been suffering with weird symptoms. Dizziness-not where I felt > that I would fall but where it felt that the floor was flying up at > me. Horrible loud ringing in my ears and hearing loss in just my > left ear. Out of the blue one day my right eye started dilating for > no reason whenever it feels like and still does so to this day. The > pain and tingling I get in my arms and legs and the neck pain > started getting worse and worse as well. I put it aside and > concentrated on my breathing issues and figured I should tackle one > thing at a time since I had such a hard time finding the one good > doctor. I couldn't take it any longer. I went to an eye doc to check > on that pupil and everything appeared ok except for the fact that I > now have borderline glaucoma. He suggested I see a neurologist so > reluctantly I took the name he suggested and made an appointment. > Wow, what a doctor! He was awesome! The most thorough and > compassionate doc I had seen yet for this disease and he seems to > know (or at least willing to investigate)about sarcoidosis. He did a > whole lot of tests and scheduled me for more MRI's that I will have > done tomorrow. He noticed from the exam that I have Bell's Palsy on > my right side of my face. Not a great amount that causes problems > but he definately noticed and after he pointed it out I really see > it now. I have no muscle tone on my right side and my eye is off > set. My glasses hide it enough that it's not really noticeable if > not pointed out. He also found that I am over 30% weaker on my right > side than I should be. I am right handed and should be 10% stronger > at least. I also have positive Babinski on right side. Does/Has > anyone else with neurosarcoidosis have/had this finding? The doctor > is very concerned about this and said he will have to do research to > find out what to do for me. He feels these finding are definately > brain related and not just nerve. My pulm did not want to start any > prednisone on me because I mysteriously gain and lose weight every 1-> 2 weeks without any diet or exercise changes and I am overweight > already. I cannot really take the metho-type due to chronic low > WBC's so I am not sure what can be done. Any advice for newly > diagnosed? I try to do brain exercises and play puzzle games and > such but instead of getting easier they are getting harder I swear. > How does everyone cope? I am not able to work. I haven't been able > to for over a year. I am filing for disability. In appeals now. > Hopefully it won't be much longer but as we all know it can take > forever. This neuro has the MRI machines right at his office so I > will have the results quick. Hopefully treatments or options can > come quick as well. Take care! Jodi>

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[Guest guest]

Kathy, who are your doctors?? I am very interested because I live in Jersey too and all my doctors want to send me to s Hopkins in land. I have been there before, nice place, good docs. But I need treatment closer to home before I lose more function. My docs here don't know what to do with me. land, as far as I'm concerned, could be on the moon. Driving there is not an option for me as I can't use my hands that long on a steering wheel. I don't want to ask my kids to drive me. Too scary... Can't give them the impression that I'm old and feeble!! Yikes.

You sound as though you've had a tough time there, lady. I dont have anything that compares to what you have going on. I only have some function problems with numbness in my feet and toes and hands. Some other places hurt. How long have you had your illness?? Hang in there and any info you have, I will soooo appreciate!! Best to you. God bless, Bonnie BSee what's free at AOL.com.

[Guest guest]

Dear Jodi,

My name is Kathy moore, I live in Jersy City New Jersey, I have had Sarc For 5

years. I have

great doctors!!!!!! Anyone in north Jersey Who needs a good doctor, I can

recommend some. I

am starting a new IV medication next week, I will write soon with info and

results. This

disease is tough because the symptoms can be so different from person-to-person.

My

symptoms are mainly related to mobility, I can't stand or walk. I can't sit-up

or roll over

without help. My left hand and arm are very week, I have very lttle movement in

my legs.

Diagnosis is often wrong and finding competent doctors is tough. Hang in there

and keep

looking. I have found that if a Doctor doesn't know but is willing to research

the disease, you

have a fighting chance. 2 of my doctors and my physical therapist were on the

net

researching the disease before I could get out of their respective offices.