I finally have an appt. at an autonomic testing center but I wasted weeks trying to go other places. Maybe my bungles can help others so I will list them here. My new primary doctor tried Cleveland Clinic but could not get past two receptionists. This was using both the main number listed to make an appt. and the neurology number. She said they kept telling her I needed to call and make all my own appts. with individual specialists. She wanted to speak with one of the doctors there but couldn't get through to any of them or get a call back. This was contrary to what I had heard others say about their experiences. Cleveland Clinic has been one of my first choices due to their reputation for being easy to work with and their incredible lab and team there. I have been told now it is better to do an email consultation first. I had also tried to self-refer to Mayo Rochester and got a discouraging impersonal form rejection. I have heard from some others this happened to them as well. Maybe having your doctor make the referral would be the way to go with Minnesota, not sure. I know both of these places have been wonderful for others.
Mayo Arizona has made it easy. After my doctor called I got a call from a coordinator who was very polite and helpful. She said they needed test information and that my doctor had sent most of it. I faxed her a couple of things. She explained that it would go through a nurse first then if she felt they could help me it would go to the neurologist I had selected with my doctor and if he felt he could help me I would then get an appt. The next day she called and gave me an appt. for late January with Dr. Goodman. I am so relieved. I am hopeful will get help and answers at last.
I was diagnosed with pure autonomic failure early this year and have had falling blood pressure with standing and after meals even small ones. I also have surges of high BP and since I can't take beta blockers I am on verapamil which works for me. I was recently diagnosed with both axonal and demilinating neuropathy and am on neurontin for that as well as taking a supplement that has the building blocks for the myelin around nerves. Recently I have started having easy fatigueablity in my arms and need to rest them frequently and when I tire my gait is different.
Shopping has become a problem as I have trouble pushing a cart now or carrying bags. I fatigue very easily.
I have had no autonomic function testing past a tilt table test. I have had an MRI which showed some small strokes the kind you don't really notice. I did note last fall I could not multi-process as well and I was having some aspiration and swelling in my throat. This I recently found was due to laryngeal swelling from aspiration and reverse peristalsis and reflux. Putting the head of my bed up 8" and working with a speech pathologist to strengthen swallowing muscles and do exercises to strengthen my tongue which evidently was weak due to the strokes and doing exercises to increase strength of breathing has made a huge difference. Getting the right help was not easy either but I finally got an ENT that had a barium swallow done with a speech pathologist in attendance and he was the one who spotted it all. I now have no swelling in my throat and no obstruction and swallowing is easier. I still aspirate sometimes and continue my exercises and hope to get back to the electrical stimulator for my throat muscles once the weather is better.
I finally got an ultrasound of my thyroid and it has been almost totally destroyed by my autoimmune Hashimoto's. The doctor who gave me the test for muscle and nerve conduction thinks my neuropathy is caused by my thyroid autoimmune disease. I am thinking it might be responsible for my autonomic dysfunction as well. I hope this trip to Arizona and to a neurologist who is well versed in autonomic dysfunction and neuropathy will help define my diagnoses since pure autonomic failure often morphs into other diagnoses with time. I should mention too my vitamen D was low and I am taking supplements for that.
I have been slow getting things defined partly because I had to take a long route to get testing. I had to ask an allerrgist to refer me to an ENT and I went to a podiatrist without a referral to get the nerve and muscle testing done. This because I did not have a neurologist working with me or a primary doctor who would readily refer.
I now have a primary doctor who is very easy to work with and I am hoping Dr. Goodman will prove to be a good resource as well. I do have a good nephrologist who helps me with BP. I guess my advice here is don't get discourage, keep looking until you have answers and doctors who can help you. Sometmes it is a long road.
I wanted to mention too that someone on the forum listed leg exercises and I have been doing those and I now have a recumbent bike for exercise. It is wonderful as I don't have to stand up to get some exercise done and I can rest when needed right on the bike.
The Mayo clinic coordinator asked me if I had a spinal tap which I have not so I am expecting that will be part of my visit. I have not been to that campus before and they told me to book a one way flight and tell my hotel the length of my stay was undetermined. It could be three days or three weeks. I won't leave on this journey until 1/23rd but I wanted to share this with everyone. I have had so much encouragement from members on this forum. Now that I have the appt. any advice about testing or the campus or trip is welcome. I will drive to Oregon and fly from Medford to Portland and then to Arizona. A straight flight could not be arranged. I am thinking now it might be hard to carry my carry on bag. Logistics! Marie
Marie-this is wonderful news! I am so glad u finally got an appt there and are having testing done. I am excited for u. This will give u more pieces to.the puzzle. Thanks for the advice. It will be helpful to many of us. I am thinking one day I may need to go to one of these places if my electrophysilogist here isnt able to help me more.
Let us know what u find out. Good thoughts are with u. I am sure many here can give u some great advice.
Marie- I appreciate your.tips. I see my electrophysilogist a week.from now and.if I can't get better answers this time I will.try to go to Mayo. I know there are no magic answers but want to be sure I have followed all avenues before I accept this is the best it can be healthwise.
I see you got your appointment-that's great. Please let me know if you have any questions. I hope Dr. Goodman is as helpful to you as he was to me. And you'll love Mary, she does the Qsart test-if you have to have that done. I'm supposed to have my spinal tap this month but chickened out. Let me know how it goes for you. I would rather have it done at Mayo but my insurance doesn't cover it. I have to schedule it after the 1st of January-am doing it at home in Vegas. Didn't want to have to worry about it before Christmas. So it's my new years resolution to get it done. Hope you get some questions answered and can find a solution. Dr. Goodman was actually with Mayo in Rochester for a short time, so he has lots of great experience and access to lots of great docs in Rochester as well. Have a great day.
tkimber...thanks for the information on the testing!
I am just starting to plan the logistics of my trip. It is a ways off but somethings I need to plan early. I think I will post about spinal taps and see if anyone knows how not to get a headache. Marie
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