lgtaylor100

Mary - How did you improve?

718mom

Have you found anything to help this symptom?

I have had this symptom for quite some time. It feels as if someone is taking the back of my hair and pulling my head backward. It is a recurring symptoms and sometimes is worse than others. I do have moderate cervical stenosis but the doctors say that the stenosis would not be causing this symptom. I have had two epidural shots; the first one worked, the second one didn't.

Does anyone else have this feeling in their neck? It's almost like my neck can't support my head.

If anyone does have this symptom and has discussed it with a doctor, I'd be interested in knowing what you have been told. My doctors look at me like I have two heads when I bring up this symptom.

Lynne

The doctor that did my TTT said I had low flow POTS but since he only did the TTT without medicine how would he know? What are the characteristics of low flow POTS?

I had a blood test that indicated a genetic defect In ACE activity. Isn't it odd that I would not have any symptoms for 61 years. Is there anything that can be done about it?

I got a diagnosis within about 8 months of being symptomatic. I was diagnosed by my cardiologist with dysautonomia because I had tachycardia. A month later it was diagnosed with a TTT as POTS. I was hospitalized about three months after that basically because I was freaked out by all of the crazy symptoms and was told at the hospital that all of my symptoms are attributable to dysautonomia.

Nevertheless, I don't feel that I have a real diagnosis until the cause is found although I realize that might never happen.

My current thinking is that I would just like some relief from my symptoms and to feel more comfortable.

Lynne

Godsgal and everyone else who is raising children despite this awful disorder-

My heart goes out to you. It is difficult to live with these symptoms and raising children while you are feeling so sick just has to be impossible.

I thank God that my children are grown and I don't have anyone depending on me on a daily basis.

The times that my daughter needs me (she is now going through a divorce) are few and my husband always helps me then.

Lieze's advice to find a way to rest is good advice. It is important to make that happen. One doctor told me that in the old days ( i guess they were the days of "neuresthenia" , a month of complete rest is what worked to reset the autonomic nervous system.

My prayers are with you,

Lynne

Nina -

Do you know what the tests are for these disorders?

I agree with Lieze it is a nice picture.

Thanks,

Lynne

Kayjay -Interesting about the pool. This summer in an unheated pool I felt great. While I was in the pool I had no symptoms and like you I didn't want to get out. I do have access to a heated pool now that the weather is getting chilly. Is the pool that you go to heated and do you feel good in the heated pool?

Has anyone heard of Dr. Depace in Philadelphia and New Jersey. I was referred by my primary doctor that Dr. Depace is a cardiologist who specializes in dysautonomia. His web page says nothing about dysautonomia so I was wondering. Please PM me if you have seen him or know about him.

That is very interesting about the vitamin D. My vitamin D level has been low for the past year. I have a script to get it retested and told that if it is still low I will need to take prescription strength Vitamin D. I have increased pain in my hips, calves and sacroiliac area recently. Is the prescription Vitamin D 50,000 mg.? My level on last testing was 21-22.

I took macrobid for a recent urinary tract infection. It did not worsen any of my dysautonomia symptoms and cleared up the UTI quickly.

I had an elevated ANA test which indicates possible autoimmune disorders. I presented with signs and symptoms of sjogren's syndrome but both the blood work and lip biopsy were negative (or at least didn't meet criteria) I do have SICCA syndrome ( measurably dry eyes and dry mouth) which is one of the indicators of autoimmune dysautonomia. My PCP has been saying all along that he thinks there is an autoimmune component of what is going wrong with me. I did the research myself and came up with these tests. Right now my doctor is in the process of figuring out how to have this done.

My symptoms came out of the blue a year and a half ago and got to the point a year ago that I had to stop working. Symptoms were bad but stable for a year and now seem to be getting worse. Feel free to reply if you would like to, or you could PM me.

These are the tests that are in the panel. Here is the site from Mayo that lists them all.

http://www.mayomedicallaboratories.com/articles/interactive-algorithms/adysautonomia/page1.html

Here is the site that talks about autoimmune dysautonomia.

http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/04.html

Has anyone tested positive on the autoimmune dysautonomia panel that is done by Mayo Labs. If so, what kind of treatment did you receive.

I am in the process now of having my PCP arrange to have this testing done and sent to Mayo. It seems likely to me that my dysautonomia is autoimmune and I am wondering if anyone else has gotten this diagnosis and then what happened.

Thanks for your help.

My cardiologist recently changed my beta blocker from coreg to Propranolol. I noticed that it blocks epinephrines. It seems like that would be a good thing. I haven't started taking the medication yet. Does anyone take this and what have your experiences?

Thanks Naomi

I'm having my PCP contact Mayo for info about the dysautonomia autoimmune panel as well. . My thoughts are either autoimmune or endocrine related.

Hopefully I will find out soon. I know many of you have been suffering for years, but this year and a half has been very hard on me. It almost feels surreal.

Naomi - Do you know what the treatment is if they find you have small fiber neuropathy. I will look into out of network benefits so I can go to see Weimar or the doctor at Hopkins if there is a treatment for it. It seems like there are so many tests for dysautonomia but few good treatments.

What other tests ANS testing did Weimar do?

I don't know yet if I have a Pheo. I am going to the endocrinologist in two weeks. Last year I had a CT scan of my abdomen and the adrenal gland looked normal but I did not have the elevated metanephrines at that time. Also I understand pheos can appear in other parts of your body.

Dizzy -I feel so badly for you with what you are going through. I can truly identify with our collective wish for a miracle drug or treatment and our collective disappointment when it doesn't work out.

Lynne

Issie - How did you decide on the supplements. Did a doctor help you or did you do your own research?

I really don't know what is the next step for me (you can read my post from today). I know I have POTS but don't know what kind.

My appointment with the neuro-muscular doctor was very disappointing. The main problem was that he was insistent that I could not possibly have dysautonomia since my blood pressure stayed the same or went up slightly during the TTT that I had in January. I told him that the definition of POTS is an increase in HR of 30 or more points over twenty minutes and that I met the criteria. He was insistent that I only had high HR but not dysautonomia. He said the fatigued muscles do not arise from POTS and the fatigue would only be dysautonomia related if had low blood pressure. He said I should probably repeat the TTT for more than 20 minutes to see if my blood pressure drops. He was very arrogant and insisted that he was correct. I had already had an EMG that was normal, I passed, as usual, the basic neurological exam, and he poked some pins in my feet and said I did not have SFN. They do not do biopsies for SFN in Philadelphia. He said I could go to Hopkins which is three hours away to get the test but said it would be a waste of time because I don't have it.

My plan was to get an appointment with Dr Weimar in NY and when I called was told that they do not take my insurance. Mayo also does not take my insurance.

I did go to my cardiologist on Tuesday and he changed my beta blocker from Coreg to Inderal, basically because of my rapid heart rate and adrenaline surges in the morning. He says Coreg causes orthostatic intolerance. I don't know if that is true. My PCP is checking in with him before I take the new med. He is also considering Florinef after I have been on the Inderal (Propanol) for a month.

Does anyone take Inderal? Does it help?

I am having my doctor contact Mayo for instructions on the autoimmune dysautonomia lab panel. I do feel my dysautonomia may have this because I have sicca syndrome but no Sjogren's and have an elevated ANA. I am also seeing an endocrinologist at the end of the month. I had an elevated metanephrines on a 24 hour urine. Other than this, I am at an impasse now. Any suggestions?

Arizona girl - I am going to a neuro muscular doctor tomorrow. In addition to small fiber neuropathy what other tests should ask for?

Here is a link from Mayo about autoimmune dysautonomia and all of the labs that are used to diagnose it. What is encouraging is that there is a treatment immuotherapy or plasmarpherisis that has been successful.

http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/02.html

Naomi and others with sicca syndrome, note that this is a symptom of autoimmune dysautonomia. This may explain why I have sicca syndrome but not Sjogren's. I wonder if these tests can be done locally and sent to Mayo.

If anyone knows anything about this or has been tested for it, please chime in.

This sounds like it may be promising.

Thanks for the articles Naomi.They are very helpful. It appears that they are separate tests. I assume that you had the gangionic AChR. Do you know what lab processed it when you had it done by your PCP?

I just went through my labs and saw an AChR for Myasthenia Gravis. Does anyone know if the antiganglionic autoantibody which I thought was for autoimmune dysautonomia is the same thing or something different. I think they would be different tests but the AChR part is throwing me.