another diagnosis????

[Moiraine]

Do any of you have other health issues besides dysautonomia? I have the type of familial (not Riley Day) dysautonomia that causes gastroparesis, low blood pressure, etc.... I have been more or less stable (as much as we get) for several years now. I have a gastric pacemaker, Interstim, and take what seems like a pharmacy, but it gets the job done.

This winter I started feeling bad, and in late Feb had an episode that didn't really feel like my normal symptoms. My neurologist did bloodwork and told me that he thinks that I may have a connective tissue disease like lupus. I'm going out of my mind waiting on the May 18th appointment with a rheumatologist..

In the meantime, the neurologist did a nerve conduction test. I don't have traditional neuropathy but he thinks that I may have small fiber neuropathy. He's waiting to see what the rheumatologist says before sending me to the dermatologist. If I have the SFN, it's going to be bad whatever the cause. I don't want the dysautonomia to have gotten worse...but I also don't want lupus.

So, do any of you have any other medical problems besides your dysautonomia? It just seems like this is ENOUGH to live with.

[kalamazoo]

hyper pots, PCOS, insulin resistance, erythromelelgias, pineal cyst, *possible MCAS, GERD and I feel like there's more lol

[Don]

I have some mental health conditions that are pretty severe.  I take multiple medications to treat them and they cross into one another overlapping symptoms making it hard to pull them apart and decide what disorder is causing what effect.  I have been hospitalized around 15-20x.  I've lost count.  I have some side effects from the meds that are unpleasant.  My autonomic neuropathy has been suggested to potentially be the result of treatment for my disorders.  It's a high price to pay for stability.  What happened to me is so rare some medical professionals find it hard to believe.  My medication causes dry mouth, chronic gastrointestinal troubles, I have trouble with concentration and memory, and I'm also incontinent.  It makes me sad to say that I've worn pads (diapers) for about 10 years.  I do not even remotely trust my body anymore.  My mental illness side effects are crossing into my neuropathy effects and it's hard to separate them.  They are so numerous.  My urologist offered me the interstim but I declined because it was not reliable enough for me to take the risk.  Those are my major conditions that I face.  My health conditions are extremely complex.  Most doctors I've encountered can't make heads or tails about what I deal with because it's so complicated.  

[Weyland]

I tested positive for Scleroderma in my blood work before I got pots . Saw a specialist at Mayo . They said they didn't think it's active in my body ,but I'm sure an autoimmune reaction in my body happened to cause my pots. My life has been turned upside down ever since. Feel like crap every day....

[Guest KiminOrlando]

Yes. Besides dysautonomia, I have Hashimoto's thyroiditis, adrenal insufficiency, gastroparesis, pernicious anemia, Chiari 1 malformation, lupus and RA. In the last couple of months I now have lung involvement and they are trying to find out what is causing it. I feel like my house is a pharmacy and it is a full time job ordering meds, going to doctors and dealing with insurance.

I think there is a type of dysautonomia that goes with autoimmune diseases. 

I know what you mean about long waits for a diagnosis. My lung tests and pulmonologist appointment aren't until late June. 

Kim 

[marcus99]

Had very severe IBS for 7 years following antibiotic treatment, cured myself of it with extreme dose of probiotics 1 year ago (~1500 billion a day from 60 species, equivalent to 300 pills with 5 billion each daily).

Have mild scoliosis (no complaints from it, found it at random on x-ray). Joint hypermobility (could be mild eds-3, though I don't care for a diagnosis, it changes nothing). Erythromelalgia (wrong diagnosis I think, probably just POTS blood pooling). Used to have asthma~like problems, fixed that with Frolov breathing device training.

[Moiraine]

Thank you guys for responding. I don't feel quite so alone now. You know how terrible it is to live with dysautonomia and all of they "extra" things it does to you, then to possibly have something else thrown in the mix.

I've gotten spoiled the past few years. I've seen the PCP, GI, and neurologist each twice a year with just a few other problems to deal with, nothing that I've not been able to handle. It took thirty years to get the motility disorder diagnosis, and thirty five for the dysautonomia. You can guess what I went through in that time. Then there were the years in trying to get me stable. I've been really spoiled for a while. Now it's back to the wait for this doctor to do this and for that one to do that, and see what this one is going to say. **** guys, I've already been through this and thought foolishly that I was done for a longer period than this. haha. Jokes on me. Guess I'm just kind of triggered.

Anyway, I am sorry that you're all going through everything that you are.

Kim, the long wait just suck.  I hope they find out what is causing the lung involvement.

Bladerunner, I wasn't impressed with the Mayo Clinic when I went there. I agree with you. Do you have a doctor now treating you for Scleroderma?

Don, don't be afraid of the Interstim. I've had mine since 2011. It might give you some much needed relief.

Kalamazoo and marcus, I am sorry for your suffering.