Does anyone else feel like their body is falling apart?

[wonderwoman3]

I am 38 years old and was recently diagnosed with Central Nervous System Dysautonmia and told that it's progressive.  I was also just told that I have a movement disorder to boot.  Does anyone else out there have that combo? We're talking muscle freezing, spasms, etc. (as if the constant passing out wasn't enough) The doctors can't put a name to it other than that...I've also been accepted into the Vanderbilt Dysautonomia program...any word on whether or not they are good?  Any thoughts would help...

Also, it bothers me when doctors say, you seem like you have anxiety...really?  Ya think?  From what I've been reading, anxiety can actually be CAUSED by having dysautonmia.

[AireScottie]

If your husband has autoimmune conditions, then he should have a skin biopsy for small fiber peripheral neuropathy.  This won't show up on EMG, and autoimmune is one of the big causes of these nerves being destroyed.  And of course, they're autonomic nerves!  Is he on any immunosuppresants for the autoimmune diseases?  Here's the MedHelp info on this:
http://www.medhelp.org/medical-information/show/74
If it's from an autoimmune disease, no amount of autonomic symptom treatment will help in the end, because the autoimmune will continue to destroy more and more nerves, until there are no longer enough left to regenerate.

[chames]

Oh, forgot one pretty standout thing (symptom), very common to autonomic issues it seems. Husband gets stronger as day goes on. Mornings are worst part of day. This is absolutely opposite how he used to be. He's still an 'up early' guy, but not a 'raring to go' guy first thing, or for several hours. We try to make all major medical appts. for early to mid afternoon. Can manage late a.m. if that's the only choice, but prefer not as it is more stressful, more to fight against. Again, this is a complete 180 from his old internal --autonomic? -- system.

[chames]

Hello again, and thank you for your kind post! Your screen name suits you 1000% -- dealing with your own serious situation and reaching out to others, like me. I so appreciate your insights and feedback, thank you!  [We do have an in-home BP monitor, and it's sure been getting a workout lately. Cardiologist appt. set up. Currently working with internist, endocrinologist & the nurse practitioner to the big prize, a very good neurologist (so we're told), who has 'special interest in autonomic disorders' who we finally meet in person in several weeks, maybe sooner if we get very lucky. (I am getting better and better at begging for appts.) ]  

As previously posted, husband has no absolute diagnosis yet. All we've been told is 'autonomic insufficiency,' or 'autonomic neuropathy.' Testing continues to try to get a more specific label. Will believe that when it happens, I guess. In 2 mos. time, taken several major detours to get to this point. Which as I read more personal stories of people, it seems blind alleys and wrong turns are very common along the way to medical professionals stumbling on/acknowledging Dysautonomia.

I won't go into all symptoms here. Not that it's so personal ... it's more that they're so varied and changeable, even in the brief time we've been dealing with it. Some things have come ... and seemingly, gone. To be replaced by different things. And who knows what tomorrow will bring? So don't want to put 'bad' info out there, 'cause don't know what's related to autonomics and what's just coincidence -- or something else entirely. But some history, if it helps you or others, here's what we've experienced or are dealing with currently:

Had a tilt test which didn't go well, led to immediate referral to neurology and first mention of autonomic issues.

He has developed orthostatic hypotension due to blood pooling issues; is now wearing compression stockings (thigh high) 16 hours a day, morning 'til bedtime. On a hydration program, 10 glasses water a day. Both have been very helpful in 'leveling' things out day to day. He has to be careful of posture changes, but that might be somewhat medication induced. One of those 'not sures' -- what is driving what?

He is back to light exercise, and is absolutely driven to do so (and was cleared by physicians for same). Was very active before this hit and is pretty obsessed with not losing that. I can understand why -- mobility is everything right now. And strength. I'm not sure who's more encouraged by his stamina and determination on this -- can only say it's very reassuring to see him keep at it.

Has lost 12 lbs. without trying. He's not a large guy to begin with. Weight has stabilized recently, and some of the loss might be muscle mass lost due to workout routine so altered (reduced). Hopefully, he'll regain some of this as well over time.

This last, I toss out as what should probably be a separate thread, but one thing they're looking at is a shingles vaccination he had about a month before this hit. Considering possible over-zealous auto-immune response which might have set this in motion (he has at least two other auto-immune conditions.). He also had a pneunomia vaccine about two weeks prior to the shingles ... that's quite a vaccine load if you ask me. I remember being uneasy about all that at the time. (I don't do vaccines. For this reason. Have heard of too many weird reactions.)

Of course, was asked if he'd had any viral infections prior to onset. We can't say yes or recall anything that stands out. He's the guy who gets a cold for about 5 minutes while the rest of the world is sick for weeks. But ... a vaccine is a super-load of virus, yes? The shingles shot is very new, just introduced in 2006. And at his neurology assessment appt., this one in particular raised eyebrows -- they said they are following another man with sudden onset autonomic problem who also had shingles vaccine. Makes one wonder. So much unknown. And might never be.

But I add this in case you might have had any sort of viral illness or vaccinations prior to feeling ill? If so, maybe this is something your docs should look closer at also.

I guess that's it right now. I don't want to get too personal either ... just hoping you have personal support that can help you with what you're going through? This is very hard stuff. Esp. what you've been told so far. I certainly hope it is less involved than discussed to date. Vanderbilt sounds absolutely top-notch in this area, it is good that you will be seen there.

Hope we'll continue to bump into each other via this forum as time and circumstance permit. For the short time I've been aware of this site, I've been so heartened by the good, generous people who are always 'there' for any and all who come looking for information and support.

Wishing you positive days.

Chames

[AireScottie]

Thanks!  You don't have to share, but I'm curious where you went that the doctors actually recognized Central Nervous System Dysautonomia?

[wonderwoman3]

I really hope yours is non progressive too.  Peripheral nerve problems can be so difficult and I know treating the pain and discomfort of it can be complicated.  Best of wishes!

[wonderwoman3]

It is also very hard being a caretaker in these situations.  Good for you for believing in your husband and having compassion.  YOu sound like a great wife and friend to him.  Please let him know that I actually had a neurologist completely blow me off and tell me it was anxiety.  I started believing him right up until the time the paramedics were at my house and I woke up to them screaming that they had lost my blood pressure completely. Doctors often don't want to diagnose anything that is beyond their person understanding and Dysautonmia is a whopper for most doctors.  

Please go to a drug store and buy a blood pressure monitor, when he starts to have symptoms, take alot of readings over a course of a few weeks and you will have alot of info.  My doctor has treated several patients like me and he said they all were told at some point that they were either exagerating, just having panic attacks, or alltogether a hypochondriac.

Now I'm sitting in doctors offices while they discuss my life expectancy with me.  Hmmmm I'm thinking maybe that first neurologist was the crazy one :)

Don't give up...And, get to a cardiologist fast.  Emergency specialists especially have no idea how to deal with this stuff.

If it's not too personal, what kind of symptoms is he having?  If that's too personal, don't worry, no offense at all.

Good luck!  You are doing terrific with all of this!

[chames]

Hello,

I just read this post of yours and I'm so sorry you're dealing with this.

My husband is yet-to-be-diagnosed specifically, but 4 ER visits in 4 weeks (in a previously completely healthy guy) before someone (not in ER) picked up on possible neuro involvement & autonomic issues ... left us feeling like we were wasting their time, as they would note his 'anxiety' and couldn't send him home quick enough. So dismissive, I couldn't believe it (and at the same time, then you start doubting yourself, etc., etc.).

That's when I realized we needed to get to a higher level facility. Starting with local teaching hospital which actually has some autonomic testing options available, and several well regarded neurologists who are part of the autonomic group, and are at the top of my husband's team. After that, who knows?

Vanderbilt, Mayo, Cleveland Clinic all still on the table, as he could also be facing a progressive situation that may be beyond the scope of the local group.

Good for you for being so pro-active & getting to Vanderbilt. Sending you all good thoughts for some relief, very soon.

Chames

[Heiferly]

You are definitely heading to the right place--Vanderbilt is one of the "big" autonomic clinics (along with Cleveland Clinic and Mayo).  Hopefully they will be able to give you more answers about your condition.  

You are right that dysautonomia can indeed physiologically incite an anxiety state (rather than emotionally).  On top of that, there are things we go through with having dysautonomia that would make ANY person anxious.  It definitely strikes a bad chord with many dysautonomia patients when doctors point out that they seem anxious; I know it drives me up a wall.  

How soon is your appointment at Vandy?  I hope you don't have to wait too long, and that everything goes well there!!

[AireScottie]

Yeah, I definitely feel like I'm falling apart.  I recently found out almost all my peripheral autonomic nerves are gone.  They think Sjogren's caused it, but even if it did, they can't guarantee my nerves will grow back or even stop getting destroyed.  I don't have the movement disorder; my muscle problems are milder than that.

I don't know what the deal is with doctors and anxiety.  They tried to blow off all my symptoms with that for years, and I'm a pretty low key person.  But it's normal to be concerned when your body starts doing crazy things and no one can help.  They should be concerned if you're not anxious!

I hope you get a lot of help at Vanderbilt.  I've still got a chance mine won't progress and I'm still pretty scared.  I can't imagine how you're feeling!