From Dx to Limboland... Hello Friends :)

[Zacksmomi]

Some people have already read that a couple weeks ago my neuro (after 15 months positive MS dx from GP, 2 neuros and opthamoligist) decided that I may have sarcoidodis.

I know Tyler is going through this right now, and you are so amazing and strong to have a brain biopsy.
My neuro upped my vitamin D intake back in Sept '09 to 8000iu daily.  Come to find out vit D could be toxic for sarc.  Funny, my sx's have been going down hill drastically since Sept. Neuro said "DO NOT take any more vit D until you see specialist"

I am hoping Quix is feeling up to chimining in here.
I am going to a specialist at UCSF, but that could be a month or 2 away, my neuro is going to call his favorite Dr personally and see if he will accept me.  He wants a MS specialist that deals with Sarc (YAY a neuro that uses his brain)

My question is, is it possible to have an MRI that reads "several T2 hyperintensities deep in the white matter representing Dawson's fingers" having perpindicular orientation in relation to the corpus callosum, as well as 3 C-spine lesions, and a ventrial pons hyperintensity, and have this not actually be MS.
I thought my case was soooo clear cut.  I got my Dx in less that 2 months.  I had 2 very seperate attacks in Dec '08 and in Feb '09.  Got my dx in Feb '09.

I have had several attacks that have resulted in periods of "feeling better" after 5 days of solu med (that is after the awful side effects went away) and I have lots of facial issues.  My neuro thinks that my improvement with steroids, my facial issues, and the fact that my MS sx's went downhill ssoooooo fast warranted an ACE.  He was right, ACE was 73 and 67 is supposedly high on his lab charts.

None of my MRI's have shown much change, the biggest C spine lesion got bigger in May '09 then on this last MRI was about half the size.  There was no mention of my right ventricle pons (probably saying that wrong) on this MRI so that is good, but there was a mention of right previntricle triangular lesions.  I am not sure if those are typical MS lesions.

i am having further testing to search for sarc, but I am really curious, is the only way to differentiate MS from neuro sarc a brain biopsy??
Feed me what you know oh wise people of my favorite forum.  I want to go to this appt in SF fully prepared.  It is a 3 hour drive and I want to make the most out of the first visit.  

OOOOHHHHHHH!!!!!! Almost forgot, I am getting an LP for the first time on Tuesday.  Does anyone know if this is going to tell my Dr anything??? Does an LP differentiate between MS and Sarc?? I'm going for the least torture with maximum results approach here.

Thanks my lovely companions
Dh

[Mike_Shuswap]

I was dx'd the end of March w MS, however my Neuro is still trying to rule out the possibility of my having Sarcoidisis instead of or as well as MS because of some old scaring on my lungs that the radiologist id'd as healed TB.

The Respirologist (lung specialist) sent me for a TB test which was neg., and he is scheduling another chest ct in Sept. My Neuro said the lung specialist might want to do a lung biopsy, but it never came up during my appt.

In both the chest ct and the galium scan the radiologists stated there was no indication of Sarcoidosis.

I had a brain biopsy in March '09. At that time they thought I had an inoperable brain tumor and were trying to determine if it was going to do me in quickly or slowly.

The pathologists where I had the biopsy done could not identify it, so they sent it to the big city where a panel of medical experts decided it is a "demyilinating, MS type of lesion".   Sheeesh

The good news is this pushed me to get my will done and get all my financial type stuff in order. I'm lucky I never got run over by a bus or something when I was younger!

I hope they also tested the biopsy sample for sarcoidosis! If not, heads a gonna role!(not mine I hope)

I don't see my neuro again till Oct. I'll have to ask him about that.

My LP was pos., but I don't know if it would also be pos if it's Sarc instead of MS. Another thing I'll ask my Neuro.

Just wanted to let you know there are others here who are going or have gone through similar things, and we're here to support you and each other.

I wish all the best of health to you and I hope you get a firm diagnosis soon! (again)

Mike

[tyler911]

Hi There

Bless you heart, I really do understand what you are going through, thinking that you have the definite diagnosis of MS, only to be shell shocked into yet another,

it really is a very emotional roller coaster, the not knowing, I hope that you will be seeing a Rheumy along the road, during all your tests, and no a Brain Biopsy is not always performed, if they can stay away from it, there are many many tests that need to be done,   they may do a cat scan, or a pet scan, if they see anything suspicious they may do a biopsy of that particular organ

as you may be aware, Sarcoidosis, does not always affect the lungs, though in a huge percentage is patients there is lung involvement, but not always

I had a positive LP, I am not certain if this also has anything to do with Sarcoidosis, I also had all the classic signs of MS, but i did not have the Dawson finger ( I think that's what it is called,) I do also have spinal lesions in my c spine  will have to look at my MRI reports to remember where they all are

Your Neuro is right, stay off Vitamin D, it is not good for sarc patients, I am sure somewhere on the sarc forum there is a discussion about this, will check it out later

I am learning very fast how similar or even identical some of sarc and MS symptoms really are, and the prednisone really does help with them, through the drug can be brutal on the body, and cause problems of its own, I know from the neuro that prednisone even at high doses would not help to the same degree with the symptoms of MS

I will be praying for you, and will pm you to see how things are going,

I too am still at the very beginning of this disease, and still learning, Tonya too has been the most wonderful person, she also has sarc, and is most knowledgeable I am sure she will chime in here

I have also learned that a lot of people with Sarcoidosis, recover with no treatment at all, but i do not know if this is for a mild form of it, I have Neuro sarc, and it seems to have spread through my body pretty quickly, some people have it for years and do not even know they have the disease, so that is kinda encouraging.

Anyway I have rambled on enough and losing my train of thought here, (like i always do)

You can Pm me and i can give you my e-mail address, we can work through this miserable disease together,

Stay calm and do try not to worry until you have seen the Specialists, (Easier said than done)

Quix, replied to my original thread MS mis-Diagnosed, she came back with very helpful tips that i checked out

Stay cool
and keep in touch

((((((((HUGS)))))))))))

Tyler

[PastorDan]

Welcome back to Limboland, Zm, even if it's only a temporary visit.  Make yourself comfortable; I'm sure some of the surroundings will look familiar to you.   Just don't get too settled in; you know how neuros are.

Wish I had more to offer that would help.  We will keep praying, which is our most powerful tool.

Peace.

[Zacksmomi]

Thanks for the well wishes.  Tyler and I are going to be good friends I am sure.  and Tonya has been super helpful.

Shell- I appreciate the LP tips.  My hubby is driving me and ....OH NO I just remembered I have to change my meeting on Tuesday.  Glad you mentioned the "plan to do nothing" it disloged my brain for a sec.

My next step is to call my disability rep and have her notify the SSA of my new sx's.  Maybe they will actually decide they finally have enough proof of disability after 7 months of looking into it :)

[landainc]

Like steph74, I don't really know about sarc's, but I'm sure someone would assist you here. I want to wish you all the best keep in touch.


Smiles :-)

~Landa~

[sllowe]

Dh,
I must of missed your prior post on this turn of events. I hope you and Tyler can help each other through.

Lots of your finding seemed so classic, I just don't know enough about the sarc to comment, but I didn't realize spine lesions were involved, if they are.

Just a couple quick tips for your LP next Tues.
- Ask if be performed under flouroscopy
- Drink plenty of fluids from now until then.
- Prep to NOT do anything the day of, and for a few-several days afterward
- Don't lift anything or go up and down steps (you know, multiples of steps, etc.).
- Do lay around as much as possible (no chores!)

Leaks can, and do happen! As you probably remember from here the classic sign of a leak is: horrifying headache (vice like) can extend into the neck that subsides upon laying down.

Leaks are quite common - more than most realize. You can feel quite fine the day after but it can happen days later. So, you can try to avoid, but ultimately if it does happen, don't panic because there are 2 solutions. You can lay flat for at least 24 hours or you can go for a blood patch.

Hope this helps,
ttys,
shell

[steph74]

Wow!  That's a lot for you to take in.  I know very little about sarcoidosis.  I gues this just shows how/why MS is so difficult to dx.

I'm sure others who are more knowledgable on this will chime in, but I wanted to say good luck with the specialist and let us know what you learn.

Stephanie