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1238753 tn?1271176183

Tests results and AAARRRGH!!

Well we're back to scratch again as all my tests - CSF, Lyme, Lupus, etc. - came back normal *banging head on desk*. So far the only actual "tests" that showed anything were a positive Romberg and a bilateral Babinski. Believe it or not, Dr. Shuster (from Mayo) actually called me herself as her nurse was out today and she didn't want to make me wait until tomorrow for my results (WOW and lots more points for her, right?)

She said we would talk about Autonomic Neuropathy when I go back for my gastric emptying test later this month (which is funny, because that's what I had asked the Neuro about here after Googling my initial symtoms to death - he was the one that mentioned MS).

There are a couple of things I'm not quite clear on though after looking it up, so I'm asking you guys (as I need a much bigger brain than the one I have :o) if any of you are familiar with Autonomic Neuropathy...

1. It appears that A/N is not really a condition in and of itself, but triggered by an underlying cause - so can MS be a cause? I didn't see MS listed as a possible cause, but since those lists aren't always exhaustive I thought I'd ask. I've also had Dermatomyositis, which is currently in remission (that wasn't listed as a cause either).

2. I have several symptoms of A/N, but I also have stuff that's not there. The biggest thing being a sporadic pain along the rib cage that comes and goes, is sharp or dull, (on the left or right depending on which way the wind is blowing :o) This one has been with me since the beginning, and I was pretty darn sure it was "the hug".  
- and -
Major mental moments - cognition issues - nice and inconsistent of course, but as an interpreter it's kinda important for my brain to zip along. The one that really freaked me out was when I decided to swap from the radio (in the car) to a CD and could not for the life of me remember which button to push to make the CD play. Must have spent five solid minutes just staring blankly at the radio wondering what to do (uh-oh...)

Another good one was the day I jumped out of the truck to go in the house and my legs just folded right up on me (I made a lovely splat), and refused to work for an hour afterward. Then we have the TN question of years ago too...

I'm not a diabetic - or even overweight - and I'm not an alcoholic (yet :o) Those were the two main causes of A/N. I did have chemo in 2006, but wouldn't A/N have shown up sooner if that was the cause? I would think that if the chemo had damaged the nerves it would have shown up more quickly, instead of a delay of several years. Does anybody know?

Okay, guess I'll stop here as I'm trying not to make it too long (probably way too late though *grin*). I did ask Dr. S. about possibly doing another MRI on their big, bad 3T machine (just in case, as mine was clear on a 1.5) and she said she would check to see if the new machine was up and running yet and set it up if it was. I've ordered a copy of my records to add to my collection, but I'm thinking I may wind up SOL (Stuck Orbiting Limboland). My, it's hard to stay positive through the many piles of poop we schlep through, isn't it?

Thank you for reading all this!! - Jen
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Avatar universal
Don't give up, Jen.  Sounds like Dr Shuster is following all the "threads" in a methodical way, which is really the only way to get to a solid Dx of MS or other hard-to-pin-down diseases.

Let us know what happens next.
Helpful - 0
1238753 tn?1271176183
Celery;

Just looked up CIDP, and I think we can cross that off the list (but one worth looking at). One of the things I keep tripping over is that my symptoms are coming and going and totally random - CIDP appears to be progressive in nature.

I did have Chemo and was diagnosed with neuropathy during Taxol (I think that one's called CIPN). It completely disappeared though shortly after chemo, and stayed gone for several years so that's one area I'm confused about. You would think if the chemo caused nerve damage that it wouldn't just POOF - but what do I know? :o)

- Jen
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1238753 tn?1271176183
That would be terrific Ren, thanks! I think it makes total sense that it would show up in MS, but sometimes I think that medical folks get tunnel vision and don't always connect all the dots and think outside their own box (the box being their area of expertise).

A/N would explain some of the things that didn't jive with MS (as in the heartbeat fluctuations and the BP), but still doesn't address the underlying cause of it. *sigh* I seem to be spending inordinate amounts of time these days feeling like a cross between Dr. Frankenstein and a Lab Rat :o)

Thanks for the response!  - Jen
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1238753 tn?1271176183
Anna;  Dr. House indeed *laugh*. Wouldn't it be nice if these things only took hours to figure out instead of eons?

I am, of course, wondering how much fun has been had at his expense with the phrase "Is there a doctor in the house?"  Hee.

I hope you will be able to get another MRI done (and maybe even find an answer or two in there :o)

A camera for your van? WOO - Way to problem solve girl!

- Jen
Helpful - 0
1238753 tn?1271176183
Thank you so much for the CIDP info - I'm going to go Google that one right away :o)

- Jen
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739070 tn?1338603402
I was just at my 6 month follow-up with my cardiologist and I asked about autonomic neuropathy causing major BP fluctuations. He told me he has seen it in  diabetics and other types of neuropathy but not in the few MS patients he sees for other causes.

He did say he did not see why it would not be a possibility since a disruption caused by neuropathy technically wouldn't matter what the initial disease is, since they all have the same effect. He said he had not since any literature on it but told me he was intrigued and would see what he could find.

I let you know if he follows through and provides any new info.

Ren
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Avatar universal
Oh Jen. I am so sorry that you are having to go thru all of this - as if the symptoms aren't bad enough,  My heart goes out to you.  I know how frustrating limbo can be and I was optimistic that they would turn up something for you.  

In my case they found hyperintensities in my brain mri that are non specific so I am heading into try to convince the neuro to do a spine mri.  My neck mri was normal - except just a year ago I had to do 5 months of massage and physio therapy to release the spasm and be able to turn it again.  Makes it hard for shoulder check and backing up - well look out!  I actually bought a back up camera for my van.

Who knew answer could be so hard to find and where is Dr. House - he diagnoses even the most rare and bizarre cases and it only takes his team an hour (lol).  Thought a laugh might help to keep you going.

My thoughts and prayers are with you, Anna
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Avatar universal
One thing I've come across in my googling - there's a paper out there on suspected MS/CIDP overlap, and apparently the spinal taps WERE negative for those people.  CIDP is chronic inflammatory demyelinating polyneuropathy - maybe something to ask about, I don't know?  I think I came across it because maybe it can be a cause of gastroparesis.  Oh - gastroparesis, btw, is a definite symptom of ANS dysfunction (for instance in diabetics).

I'm sorry I can't be more helpful!  I hope they find you some answers.

Best to you -
Celery
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