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nrivers (@nrivers)

Struggling with cluster of symptoms

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

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@nrivers

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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Replies to "Hi MLorena, Interesting. I have also reached out to a neuro-ophthalmologist for an appointment, just yesterday,..."

@nrivers I appreciate your comments very much! I know I am not alone. My mom always use to tell me that if you think you have it bad look in someone else's backyard. I know a lot of people out there are really having more issues than I am. I have had many different kind of journeys in my life and this is just a very different one. I think after reading about small idiopathic nerve fiber that it seems to me that there are symptoms but there is no way of knowing yet how this plays out. After reading I really do feel somehow everything is somehow connected. Another piece of the puzzle. I worked in a position where I had to do a lot of talking to patients and families. That was the best part of my job talking to the families and taking care of the patient. It was easy for me. I am working on me right now. Thank you also for recommending Dr. Lamb. I have worked around Doctors for many years and I have seen a lot of Doctors because I have moved around the country. I have met some non-caring Doctors and I have decided not to keep them. I have a cardiologist who is fantastic very caring and knowledgeable. So I think of her when looking for a new Doctor. nrivers You hang in there yourself!

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