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nrivers (@nrivers)

Struggling with cluster of symptoms

Neuropathy | Last Active: Aug 3, 2021 | Replies (10)

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@rnlorena

I was wondering if you have had your vision checked. I am 65 by the way. I have seen the Neuro Ophthalmologist twice now. The first time that I saw him I was having pains in my eyes. He checked my vision and my corneas and said I had no damage. The second time I went to him I was still having the pains in my eyes. Some patients have dry eye. I know I didn't I read the symptoms. I finally got the answer I was looking for. My eye pains are related neurologically. He also said I blink my eyes more than other people. I will be getting my eyes checked yearly to see how the nerves in my eyes are doing. I also have had palpitations. I have had them in the past but not like this. I went back to my cardiologist and she had me do a two week heart monitor. I was totally shocked that the highest my heart rate was 183. I feel really stupid because I am a retired nurse and I didn't realize that my heart rate was up. I just felt different. I now know what a high heart rate feels like. That is one of the symptoms of SNF. However my Cardio is doing some tests to make sure it isn't something in my heart. I have SNF. I understand your fear and anxiety because I have it also. I still have one test pending and I still think mine is going to be idiopathic. I woke up two days after I retired and had full blown pin pricks and ant bite feelings all over and including pains in my eyes. I had weird pains in different places that I have never had before. On the back of my left hand I experience a feeling in the very same place many times over the course of the day. I have done a lot of reading about my medications and SNF. I am beginning to think that everything that I have had from two years ago to the starting might somehow be related. I have lots of questions without answers. I want to go to the Mayo in Jacksonville not for a second opinion but to see if I might get answers. I have read your story and lots of others and everyone seems to have a lot of the same symptoms. I am not sure if I will experience what symptoms you all are having. After reading and studying I am beginning to feel like I am waiting for the next thing to happen. I don't mean to sound down. I am glad to have this forum. It has helped me to understand some things. My other question is when my nerves are totally burnt out what will the next symptoms be? Those are the things I am not sure of.

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Replies to "I was wondering if you have had your vision checked. I am 65 by the way...."

Hi MLorena,

Interesting. I have also reached out to a neuro-ophthalmologist for an appointment, just yesterday, in fact. The visual symptoms are very strange and like you, I wonder if all of this is connected. Like you, I have not been diagnosed with any of the frightening neurological diseases they list as possible causes–yet, they cannot rule them out entirely either–and so one has to "sit" with the symptoms for several years, as they test occasionally to see if the protein levels are up or the light chain levels have changed, and so on. I didn't know anything about this until recently–I feel like I've become something of a lay expert on neurological disorders!

The neurologist I saw at Mayo Rochester recently moved to Mayo Jacksonville. His name is Dr. Lamb. A very kind, and extremely bright young man. You may want to see about an appointment with him.

I also have heart issues and have wondered what if any connection there is between that and the neurological concerns. I have mixed valvular heart disease which will eventually require a valve replacement. However, my cardiologist and neurologist think these two issues are unrelated.

Instead of a high heart rate, my pulse is low. I run 54-60 resting and my rate does not increase as much as it should when I get up quickly, start moving after stopping, etc. Hence: orthostatic hypotension. But they think its just another symptom of my autonomic nervous system being out of whack.

MLorena, I am sorry to hear of your pain and empathize with you in your struggle. You are not alone. Hang in there!

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