I need help

[photomama]

I am learning how to say that, especially the last two and a half weeks.

A bit of background- I've been in limboland for 7 years. 6 years ago I had a flare that took my balance out. The rest of this has been a slow progression of symptoms.

I've seen 4 neuros, a chiropractor, opthamologist, OT, PT, speech therapist, ENT, gastro, pretty much any specialist out there to deal with my symptoms. They all say "sounds like MS".

Done any test out there (repeatedly)- MRI's (of everything), tested for anything even close to MS (and even some "zebras"), LP, EEG, EMG, sleep studies, neuropsych tests, I have become an expert in diseases with symptoms related to MS (and even some others).

We have been treating symptomatically, while calling this MS, but not officially diagnosing it, as some neuros have said I'm in that 5% who don't show lesions (but won't diagnose me). I have been ok with this, even while I have been progressing. Until now.

3 weeks ago I had my second full out, can't deny it flare (after being sick with a virus). It took out my left side (major weakness), it added numbness to my right side (I'm already numb on my left), and I'm dragging my left foot. Major fatigue. Called neuro. She said wait and see if I feel better as I get better with the virus. Called back. Finally got in, got documented. Did an MRI. Scheduled more PT. MRI was stable (as usual). Neuro said "I don't know what this is" and basically is leaving me on my own to deal with this flare.

I need help. My husband and I are so tired of this. If I could give up the fight and never see another doctor, I would. But I have children. I have an aunt who ignored her symptoms and didn't get diagnosed until after I started having symptoms (and encouraged her to get checked again, 20 yrs later). And now she is really bad. And I don't want that to happen all because my neuros refuse to look at the whole me and the whole story.

We don't know where to go from here. We've restarted with new neurologists before. Obviously, I am not a "normal" neurology case. I don't even really care *what* disease I have (it could be photomama disease :P), as long we do something to try to prevent more damage, more flares, more progression from happening. My current neuro is supposed to be a top MS neurologist in the state. So why doesn't she *do* something about this? Or apparently care about the 5% without lesions?

I would take a break from this fight- I've done it before, but I've reached a level of disability where I can't go without medical care. Back to using my cane, and I can't go without the medications I do use.

We're to the point where we think it might be helpful to go somewhere (Mayo? Somewhere else?). I don't even really know. We are just so stuck. If you have read this far, bless you. Thank you for listening. Any suggestions?

[Sara Angela]

Sorry, you are going through this! You might checck out Lyme Disease. ********* has helpful tips about getting tested.

Sara


** URL removed per MSWorld guideline #6. The link was not correct. **

[Mynamegoeshere1]

Have they checked for lesions on brain neck and spine? Lumbar puncture? You would think she would go the extra mile? Where do you live? My Nuero thrives for learning and solving all issues. I'm in Houston.

[mjan]

(((( HUGS ERIN ))))

I am so sorry for ALL you are struggling with..ENOUGH!!

Had similar experience for years with a possible MS, to benign to NO, you do not have MS and I had over 20 plus lesions on the brain...just not the classic. At least this renown MS neuro who once told me, I never rule it out, then he did !! LOL

Leave it alone, and have to start over with all new docs due to job/insurance change. 3 of the new specialists all suspect I have MS. I remind the its been ruled out. THEN I have another bad exacerbation. Do another MRI after a previous Brain MRI showed the same, no changes. BUT this time those little MS buggers SHOWED Dawson fingers shaped lesions..go figure.

Now by this time I dont believe I have MS..get a 2nd opinion and she confirms it. Hmmm...really? The long chase is over..

So I pray you get answers and sooner than later. Definitely had MS for over 20-25 years but not the classic symptoms. Also believe I may have had it since I was a teen..but its hard to know now.

Know that WE understand and will stand by you my dear!

Warmly, Jan

[photomama]

Thanks so much Jan. It has been a struggle. We are just sort of lost at the moment. I just wish these neurologists would realize that "hey, maybe we really don't know as much about MS as we think we do!".

For those wondering, we HAVE ruled out lyme disease, lupus, vitamin B deficiency, literally all of the mimicers (and a great many more) over and over (and over). I've even done some anti-depressants to make sure this isn't "all in my head" (long story- it isn't). It really has to be MS (or an unknown disease that acts like MS).

And we've done all the tests over and over and over. With multiple neuro's at multiple places. I believe it truly is a "technology isn't everything". I have plenty of clinical signs and indicators, a neuro-psych test with some major cognitive issues indicative of an MS-like disease, among other things.

I've seen some great neuros and they each have brought something to the table (new tests, new ideas, etc). But my current neuro I think is out of ideas (tends to happen to me- my neuros finally get to that point and give up because I am not a typical neuro case).

Trying to stay positive through all of this- it has been very hard. I've held on to my faith as hard as possible. There are very few people who truly understand this long limbo journey (while still progressing, still getting worse). So it is nice when I find a few people who do!

Thanks!!!