Sarcoidosis?? MS?? Some Please help...

I have been gone forever and I am sorry.  I hope everyone here is well.
I went to the neuro today and he is testing me for sarcoidosis now.

I was dx'd with MS Feb 9, 2009 after what appeared to be 2 clear attacks.  First I lost feeling and most of the use in my right arm for 6 weeks then it returned about 95%.  Then I developed L'Hermitte's sign about a month later.  My MRI's showed Dawson's fingers in the brain, 2 C-spine lesions and a ventricular lesion.  I have been on DMD's for 14 months now had 4 clear attacks.  Changed from Rebif to Betaseron.  Had 3 sol u med  treatments for 5 days over the last year and have a host of sx's including numbness, fatigue, tingling, trigmenial neuralgia, nystagmus, and spasticity.  I am now using a cane any time I go out.

So I have no ill health, lung probs, etc and after reading up on Sarcoidosis I can remember a very few skin issues I questioned but nothing major.

My neuro today said that he is really concerned about Sarcoidosis and is running a slew of tests.
I asked him if I could have both MS and Sarcoidosis and he said that is VERY RARE.  
So how do they tell the difference.  Reading about sarcoid it is highly possible that I have it, but how on earth do they rule out the MS at that point??
He wants a new MRI of Brain, C and T-spine but is leaning toward a spinal tap.  

Is there anyone here who knows how they rule out MS if it is sarcoidosis??
I am happy because there is hope that they can make me feel better with sarcoidosis, but I am worried about the can of worms this has now opened up.

Thank you all for being here
D

[Lulu54]

Sarcodoisis can be an MS mimic, but I thought it was pretty rare.  Most sarc patients have lung involvement, whereas only about 5% have brain involvement.

I just checked and found an intersting article that said in autopsy if sarcodoisis patients, 45% had periventricular lesions, which looked like MS. To me, that number sounds huge!

Check you mail for a pm from me with some more info.  Keep us informed, ok?

be well, Lulu

[tyler911]

Hi There

Sorry to hear you are going through all this,

I was Diagnosed with MS in December 09, and was diagnosed with Sarcoidosis nearly a month ago,

I too asked the Neuro if I had both, MS and Sarc it seems like i do have both, or at least the MS specialist and the Neuro says I have both and the Rhuematologist thinks i only have Sarc,

I also wondered how they could tell the difference, as I have Neuro Sarcoidosis, and also in the lungs, heart, liver,

Let us know how your tests go,

Stay well

Tyler

[tonyad]

  Hello. Nice to see you around again :)

   Let me first start off by the dissillusion that Sarcoid is EXTREMLEY RARE!  This is not really an accurate statement!  it is the LACK of KNOWLEDGE through the medical community that so many really have Sarcoid but have NEVER been dx because of the misunderstanding of it and doctors lack of knowledge about it!

    Sarcoid Is NOT (like most people think..including doctors) a disease mainly of the lungs!!  While many people do have Sarcoid involvement in their lungs.....So, so many have it other places as well.

   I too Like Tyler was dx w/ Sarcoid several years ago. Guess what...NOT in lungs!  But rather only involving lymphnodes.  I have a friend who has Sarcoid who's did start w/in the lungs and has since wreaked havoc in her body....in a Sarcoid Support (here Locally) there are many who have Sarcoid that have NO lung involvement.  OK, so I will get off that MYTH.  (sorry to rant) ;)  It can mave to lungs though as well to any other organ in the body (skin is also considered an organ).

     Lulu is correct in saying that it is not until postmortem (autopsy) that they finally see Sarcoid in the Brain. There is a great Sarcoid Forum that both Tyler and I are on and if I am not mistaken Lulu also visits over there sometimes??  PM me and I can give you that link.  

    An ACE Level (through blood work) would be a strong indicator of active Sarcoid goingon in your body.  Also as a side note..If one has active Sarcoid you may see the same results including O-Bands in the LP results.....as one would in MS.
Just something to think about.

     I hope you get the answers you need soon. Again PM me and I will give you some more info on the Sarcoid Forum and a couple other things.

Take Care,
~Tonya

[essdipity]

Since sarcoid is very often seen in the lungs, the first test for it is usually a CT scan of the chest. I am surprised that your doctor is not ordering that. Can you ask him about that?

I'm wondering why he is concerned about sarcoid in your case. Every symptom you describe is classic for MS, and you already have an MS diagnosis. Perhaps he is worried because you continue to have attacks while on a DMD, but that unfortunately does happen to a lot of people. If Rebif wasn't working, Beta might not work either, since they're basically the same thing. There is always Copaxone, and Tysabri is a riskier but effective alternative.

Of course it is possible to have both MS and Sarcoidosis, but that would be extremely rare. Your doctor may be pursuing zebras when the horses are right in front of him. I of course am far from an expert, so I can only say that in your shoes I'd sit down with the neuro and find out his thinking on all of this. I'd have a list of questions, including follow-ups depending on what he explains.

Please keep us posted on all developments.

Thinking of you,
ess

[Zacksmomi]

Thanks everyone.
Reading about Sarcoid I do have very few sx's outside the neurological realm. I do not have chest issues, but I have wierd thyroid issues that have been put on watch, and I have had some concerns about the lymph nodes under my arms that I just assumed was my arm changing from getting so heavy.  I am going to keep up my reading.

Lulu and Tonya, thanks for the message I will look more at the sites.

Tyler, I do hope you find out more soon.  Send me messages to keep me posted on your results if you don't mind.

Ess, my Dr was very curious as to why I am not having any chest related issues.  I have had antibody tests done for rebif and it was normal.  I am about to have one for Beta and I am sure it will also be normal.  I think because my sx's are going downhill so fast with very little improvement, and I am not having "clear cut" attacks and relapses may be part of his concern.
I am also having very bad hip joint pain which he though was from spasticity but now he is concerned it is something else.
He said that if Sarcoid comes back negative I am going to UCSF and most likely will have to try tysabri which scares me.  

UGH...oh the waiting game.  I do know that the lesions I have seen on the brain in sarcoid look quite different from Dawson's fingers but I do see lesions on my MRI that also look like the sarcoid lesion pics.  That of course could just b MS too.  
I don't know what I am hoping to find out except that I don't want BOTH.  

Thanks everyone for listening.
I will keep in touch
D

[Wobbly]

before I was Dx with MS, the Dr were looking for Neuro Sarcoid.. since my ACE was neg and no lung problems, they ruled it out...

hope you find answers, sorry to hear your going through more stuff.

take care
wobbly

[Fasco1]

I know exactly what you are going through. I am a 46 year old male diagnosed with MS in 1999 however had the symptoms for 11 years prior. After MRI's and spinal taps I was confirmed as having MS. Then in 2004 I thought I was having a heart attack had all tests done and was told I had advanced stages of Hodgkins and had 2 weeks to live and they sent me to the City of Hope to have a lung biopsy done to find out I was also confirmed as having Sarcoidosis. At the time, the City of Hope said I was only 1 of 9 registered as having both Sarcoidosis and MS. It is rare to have both but the silver lining is that Solumedrol helps the symptoms of both. I just ended my gram a day for three days and almost feel normal. Keep your head up, keep laughing and always have a smile on your face. You will feel better then.


Since you are newly diagnosed, I will give you something that may help you like it helped me get through. While visiting my neuro, I noticed alot of people saying why me, getting depressed and so on. While they were doing that I looked at it a little differently. I looked in the mirror and saw a 30 some man who got to play baseball through Jr. College, play on swingsets when I was a child and lead a normal childhood. I decided to ask God to give me any disease he chooses just spare children from these diseases and give them a chance to live normal lives. If I feel there is any chance that I took the diseases from a child, I can and will keep a smile on my face. By the way, since that day I have gotten Sarcoidosis, had two heart attacks- one stint put in, two back surgeries of which I couldn't walk for 2 years, a illingual hernia in the belly button, and too many cluster headaches to count. But one thing I can say, with my thoughts, I always have a smile on my face and laugh at the situation. Being depressed doesn't help, so why not be happy!! I hope you didn't take offence to this last paragraph, only trying to help.

Good luck with your situation.

Fasco1

[RedFlame]

You really have had so much to deal with physically.  Having MS, Sarcoidosis, Hogdkins and heart attacks and you still have a really good attitude.  Having a spiritual life with a connection to God is so important.  

He is the only one that can be there for us all the time.  It's wonderful that you have been through all of this and still have a great attitude.  

Welcome to our community.  I think you will find friendship, support and a sense of community here.  

Red

[jules1212]

Well I was diagnosed with MS Dec 07, by LP results...however up until that time they thought I had a brain tumor and prior to that I had lymph nodes extracted in my groin area that ended up reactive but benign.... Anyway 3 years later I just finally went to a Rheumatologist and he said he feels extremely stongly that I don't have MS that it is Neuro Sarcoidosis....anyway he said you can't have both MS and NeuroScaroidosis... its impossible.  My Neuro always said I was very atypical for MS and progressed beyond a reasonable explanation.  So now I am going through a whole new battery of scans etc.   BTW my Rheumatologist also said the ACE *blood test* is about 45% effective and only if sarcoid starts in the lungs.   Most ppl will test neg and still have it.   I was tested 5 times neg...but I fit like a glove for neurosarcoidosis apparently.  Well it makes sense they all wanted to say it was that in the beginning.... anyway after talking with a specialist at Mayo  they said that less than 1% start in neuro *central nervous system* but 10% evolve into it at some point still it is rare.  It is most common in the lungs, and liver &lymph sys tied at second, So anyway...I would reccomend going to both a Rheumatologist and Neurologist that will work together because Neuro sarcoid falls in a grey area between Neurology and Rheumatology.  Often and I have found VERY often people are mis diagnosed with MS and it turns to be sarcoid or vice versa.  Good Luck!

[Mike_Shuswap]

Hmmmm.  When my neuro dx'd me with MS in March 2010 he said "but I reserve the right to change the diagnosis".

He was concerned about something found on my lungs on a ct scan that was thought to be scaring from previous TB. The scratch test proved no TB, so my neuro thought possible sarcoidosis.

I had a gallium scan from head to knees, no sign of sarcoidosis. My ACE test said no sarcoid. I had a brain biopsy which proved no tumor, but I have no idea if it would have been tested for sarcoid.

My spinal tap was positive for O bands, but as Tonya said above it could be positive with sarcoid too.

I went to a lung specialist (respiroligist, i think...) who felt no sarcoid. He orderred a second chest ct which I had a couple weeks ago.

I have an appointment with the lung specialist in a few days for another check up and to discuss the recent ct. I'm not sure what I'm hoping for....I haven't done my homework re cureability of sarcoid.

I'm taking Rebif which is a pain (pardon the pun ;), but what would I have to take if my dx was changed to sarcoidosis? I'm not even going to look into it unless it turns out I have it.

I don't see why you couldn't have both diseases, but I suspect if sarcoid could be proved it'd be assumed that's all you have, just my uneducated guess.

I just wanted to offer my support and best wishes and to let you know I kind of know what your going through.

Good luck and keep us posted

Mike

[Quixotic1]

There is no way that NeuroSarcoidosis and MS are mutually exclusive.  However, with NeuroSarcoid being so rare, it would be a very rare and unlucky thing to have both.  I agree with Mike that if NeuroSarcoid is diagnosed they will stick with that diagnosis.

Interesting info above that states that there are 9 people registered in this country as having BOTH Sarcoid and MS.

In my reading the three closest mimics to MS are NeuroSarcoidosis, Sjogren's Disease - with mainly neuro involvement, and Neuro-Lyme Disease.

Quix

[Fasco1]

Having a positive diagnosis for both MS and Sarcoidosis are extremely rare. I was at my neurologist and asked again about how many people have positive diagnosis for both MS and Sarcoidosis. He and I have a great relationship, so, he chuckled and said if this was the lottery, you'd be a very rich man....unfortunate for me, it's not the lottery. I was confirmed with MS through MRI's and spinal taps, then confirmed with Sarcoidosis through lung x-rays and a biopsy of the lungs. The only nice feature about having both diseases...My three day treatments of 1000mg. of solumedrol make me feel like I won the lottery... I feel like a normal person, at least what I remember a normal person feels like.

I have a great sense of humor and hope I didn't offend anyone. I find it's the best way to get through the tough time we will all face. Hope everyone is well and enjoying their Thanksgiving.  

[Aussie_SusieQ]

Hi,

Take a look at our new web site www.sarcoidosisaustralia.com our chat room is at http://groups.google.com/group/sarcoid-lyme-support?hl=en

Aussie SusieQ

[ollieflop]

I have had 34 infusions of Tysabri and was dx with MS in 2005.  I have had breathing problems (very severe) for many years and so many neurological symptoms too!
Always lots of disease activity even though having Tysabri every month. Now being looked at for Lymphoma or other things too cos i have a whole load of B symptoms including drenching my clothes and bedding many times during the night...the list goes on.
Anyway, just had a CT come back showing multiple spots and changes to tissue...i am now waiting for referral to chest specialist.
They are saying nothing in terms of results only that my condition is very serious and has gone on way too long like this.  My breathing is so limited now and my limbs zoo weak.
I NOW THINK I HAVE NEUROSARCOIDOSIS!!
My mri over the years have shown many brain lesions including brain stem and temporal lobe as well as other places but i have very high spinal lesion load.  They are at c2/c3 c4/5 c5/6 t2/3 blablabla.
Do you very experienced researchers out there think this could be a misdiagnosis of MS and actually Neurosarcoidosis?
Please help and keep up the great work and communication in the community xx

[Guitar_grrrl]

Hi, Ollie -

I don't know if you noticed, this is an old thread, and will likely be ignored by the regulars.  Please start a new thread and introduce yourself.  We'd love to learn about your journey, and especially what's going on right now.

See you soon?
Cheers!

[boopudg]

hello there...i was diagnosed with sarcoid in the right eye orbit i had a benin tumor they took a biopsy, it shrunk with methatrexate...NOW..i am being investigated for MS...have had symptoms for years...finally my legs are giving out and i have the tingling, itchiness,headaches and severe heat intolerance...i hope i get the correct diagnosis...now i think its neurosarcoied, but a sarcoid rheumatologist super specialist, stopped my meds and said i probable never even had sarcoid...so....maybe the eye thing was optic neuritis...good luck to all of us! TeriG

[boopudg]

hello there...i was diagnosed with sarcoid in the right eye orbit i had a benin tumor they took a biopsy, it shrunk with methatrexate...NOW..i am being investigated for MS...have had symptoms for years...finally my legs are giving out and i have the tingling, itchiness,headaches and severe heat intolerance...i hope i get the correct diagnosis...now i think its neurosarcoied, but a sarcoid rheumatologist super specialist, stopped my meds and said i probable never even had sarcoid...so....maybe the eye thing was optic neuritis...good luck to all of us! TeriG