I saw a neurologist 2 days ago, hoping to find answers to what I had been told was autonomic dysfunction. After a thourough exam and a thorough reading of my past medical records he came to the conclusion that I had autonomic neuropathy, especially in my legs and feet. He also looked at a written report of a CT scan I had done at another hospital and said that, although brain CT scans are not necessarrily reliable, it appears I have had some small strokes, not bad enough to be considered actual strokes. Sounds strange but that is what he said. There appears that there may be some damage from them and he is ordering an MRI to get a better picture of what has happened.
Meanwhile I still have all the same symptoms; disorientation, unsteadiness, nausea, headaches, extreme fatigue, weakness, tremors etc. My blood pressure is still quite high and from day to day it is all over the place as far as the numbers go. I still am not allowed to take any meds for the high BP. My pulse still jumps up whenever I take it, first sitting and then standing for 3 minutes, occasionally by 40 points or more. Is autonomic neuropathy the same as auutonomic dysfunction? I did ask him if there was a possibility that, even with treatment (which there seems not to be much available), if I could just stay the way I am with all my accompanying symptoms. His response was that, yes, it was quite possible.
I have done some internet research, including this site and the Mayo Clinic web site, among others and I get the feeling that, even though there is a slight chance this could go away, it is more propable that it will not. I can deal with that. I just want to know for certain where this is leading. My wife and I have had quite a few discussions and we basically decided that what it will entail is pacing myself, setting priorities and adjusting our life style. There will be things I love to do that I cannot and other things that I can that will be good replacements.
I know I have just written a short story but any thoughts and comments from others will be appreciated. I have only been a member of this forum for a few weeks but have found it very beneficial.
At the beginning of October, they noticed that my pulse was down in the lower 40's and said I had bradychardia as a result of my meds and changed one of my hypertensive meds. A few days later they found that when I stood my BP went down considerably and my pulse shot up. They said I was orthostatic and took me off a lot of the meds I was on, including all of my high BP meds. When I was in the hospital for 4 days and they said I had an autonomic dysfunction, I was told to see the neurologist but to avoid my BP meds for the time being. I kept a log of my BP and pulse since then and recently sent it to my Primary Care Clinic and am waiting to hear from them now,
That's interesting. I have been diagnosed with NCS. I am on 4 bp meds at this time including a betablocker which keeps my heartrate in 40s and 50s most of time. I.was put on this due to.tachycardia. My cardiologist tells me.this medicine induced bradycardia is much safer than the tachycardia. When I stand for more than 7 min my bp bottoms out and I.faint. Yet I am told I.have to take the bp Meds to.control my high bp. My bp.stays low mostly but do have some spikes. It's interesting how different drs think isnt it? Thanks for explaining that to me.
Maybe together we all will become the experts know this forum and can teach our drs.:)
I am trying to.find an answer to your question regarding autonomic neuropathy and autonomic dysfunction. I think I know but left message for my neurologist to make sure I am right b4 I tell u wrong. Hopefully they will call me soon to clarify what the differences r in these 2 things.
I think sometimes the words used to describe our symptoms become confusing. I had problems one time discussing with a doctor "palpitations" because we both had a different definition and ended up in the beginning comparing apples and oranges because of it.The word neuropathy is like that. It can refer to what happens in your feet and is quite isolated and it can have a quite broader meaning. It can describe the entire symptoms of the syndromes that some of us here on the forum have as in my pure autonomic failure. I am sending you a link to an online definition put out by NIH.
I happen to also have a history of small strokes. This was discovered by accident when I had an MRI because of the hypotension. I have been working with a speech pathologist because I have had some difficulty with swallowing and at time speaking but not in the traditional large stroke way. I more had pain on phonation after coughing from reflux causing swelling in the laryngeal area. The more we investigate the more we find weakened tongue, weakened this and that, that can be worked with through specific exercises. I am already having less reflux since putting the head of the bed up and finding a modified way to eat and working on strength training. There are some things we can change.
I also seem to be developing neuropathy in my feet and legs. I am having muscle conduction tests this next week. I won't know more about that until then but I think of this sort of thing as progressive. I do know that there is a new medication that will be out this next year which is mentioned in another post on this forum which can supposedly reverse some of this type of neuropathy. One of my doctors also told me to use daily a supplement that has cod liver oil and a butter compound that supposedly has the nutrients the nerve sheaths require around our nerves. I do what I can not knowing if it will help or not. I do notice more of the pin and needle pains when I don't take the supplement.
So first of all I am sorry you are going through all this. The more you can define specific problems that you have, the more likely you are to find some help with each one. I had to go to an allergist, a GI doctor, an ENT, then have three different tests before a speech pathologist correctly identified my problem with swallowing. Now I am traveling 4 hours round trip twice a week to get therapy and it is really making a positive difference in my life. I also had to let go of one doctor who didn't think my seeking help would be of any positive consequence.
With any long term illness you have to persevere and build a team of people who can help. Sometimes that means letting go of ones who can't and seeking help from others.
There are some too who have found their symptoms caused by reversible causes although those are more rare. Sometimes going to a place with autonomic function capability like Mayo can help define the problem better. This allows a more realistic prognoses and treatment plan.
I hope something here was helpful. Let us know how all goes for you. Marie
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