Shy-Drager Syndrome

[ethansmom]

I might be way off here, but I am feeling a little panicked after reading about the symptoms of Shy-Drager Syndrome. Some of the things I was reading on dinet mentioned muscle weakness, dry mouth, loss of bowel and bladder control, difficulty swallowing, eye muscle weakness, and muscle tremors/spasms. I have ALL of these symptoms, but I don't fit the profile of the typical SDS patient, as a 21 year old female. Does anyone else with POTS experience these symptoms? Do I have cause for worry, or am I being irrational? I was just poking around for information, and was curious to know more about the other types of dysautonomia. I have a fairly stable BP, it's the fast heart rate that is my main problem. Just need some advice . . . thanks!!

[nicole]

Hi, I am with you. I read it and got very nervous too. My doctor has only done a tilt table test on me and it showed nothing. I have low bp but it happens when I am lying, sitting and standing. My heart rate does go up when I stand though. Shouldnt the docs to a complete workup to tell us what we have. (not just say it is Pots) Wouldnt there be an underlying conditioning causes us to have this, or could we just have pots. I want to know the long term prognosis.

[MightyMouse]

Of the autonomic disorders, Multi system atrophy (MSA) also known as Shy-Drager, is pretty rare. There would likely be brain abnormalities that would have shown up on CT or MRI's of the head (atrophy of a portion of the cerebellum). There would be parkinson-like symptoms, that would be progressive. There would be slurring of the speech which would likely worsen over time. Walking would be come quite difficult, if not impossible. Weight loss is from muscle wasting, which would be pretty obvious--the more muscular areas of your body would start to lose mass, like the upper legs. Respirtory problems would be apparent, including sleep apnea (where you stop breathing while alseep). Also, the outcome is grim, with life expectancy at about 7 years from onset. That being said, if you've had your symptoms more than 7 years, you probably don't have MSA.

The eye issues can be caused by any number of issues, including chiari, high intracranial pressure, etc. If they persist, you should see your doctor.

The bladder is controlled by the ANS, and retention is a symptom I have lived with all my life (38 years). My GI functions are also impaired. My gallbladder basically died, as it became atonic (no tone) when I was 30--just stopped working and had to come out. I have POTS and NCS/NMH.

As for doctors testing for MSA--if you've gotten a POTS dx or similar dx from your doctor in under a year you're in the minority. Most docs don't know about this area of disorders, so to have the expectation that they'd even know what tests to perform is unlikely. More and more, folks ARE getting sent for a tilt test by docs who don't necessarily specialize in ANS issues, which is a huge leap within medicine. I'm not trying to excuse the failures of physicians (yeah, it still bugs me that I was 32 before I got a definitive dx despite being ill all my life...GRRRRrrRR), but you must keep the above in mind--if they don't know about your disorder in general, you can bring them some info to get them up to speed (articles, links), you can request certain tests to rule out other disorders, or you can try to find another doctor who does specialize in ANS problems (hard to find).

Nina

[carlacat]

I was nervous about having this also so I asked my Pots doc and she said no I did not have shy-drager and I do have the same symptoms as you do.

[ethansmom]

Okay, so I was being a major hypochondriac

I talked this over with my doctor and he just laughed and told me I have *nothing* to worry about. I do not have this disorder. Thank God.

[MightyMouse]

You are not a hypochondriac! Lots of the symptoms overlap with other disorders in the same group.

I used to constantly worry about my elevated ANA and all the really really horrible disorders associated with the type of ANA issue I have (Michelle has it too...it's high ANA, speckled pattern, stains pink). Now I just am happy that, so far, I've not had most of the symptoms associated with the worst of the disorders.

Nina

[Timbo]

I think we have all wondered at one point if we have SDS. I think we have all been frightened of it. Anxiety is a POTS symptom and I get it a lot. When I start getting muscle twitches I worry it could be ALS. When I had them to begin with I was worried about SDS. The biggest SDS symptoms are severe orthostatic hypotension, severe headaches caused by the hypotension and blackouts.

The easiest way to rule out SDS is to get a blood pressure cuff and lay down on your bed. Wait for 5-10 minutes and take 5 readings. Get a basline. Then bear down as if you are having a bowel movement and take your pressure. If your pressure goes up, you do not have SDS. You heart rate should elevate as well. This is known as the Valsalva manuver and it ruled out SDS in my case.

Oh and if I had a dime for everytime I worried about having SDS I would be rich. Anxiety is a part of POTS. I think it stems from getting these overlapping symptoms.

I am glad to hear your doctor ruled it out. It would be very rare in a 21 year old.

Edited October 17, 2003 by Timbo