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Neurology Appointment in Feb: How long can I expect to be there?
Visiting Mayo Clinic | Last Active: Feb 3 8:50am | Replies (5)Comment receiving replies
I had the worst experience during my visit to mayo in march. I went for neurology, as Ive seen several in my area and keep getting the same answer: This doesn’t look like MS, I dont think it’s neurological. So I went to Mayo, applications had left side stiffness, resting tremor, muscle spasms; drooling, tinnitus, constipation, night sweats. I stayed for over a week and saw movement lab, neurologist, urologist, and ophthalmologist. At the end of my trip I met with the Urologist who told me I have Neurogenic bladder, caused by a neurological condition my Neurologist will give more details on. They were informative and explained the condition throughly. I felt like I finally was on the right track to finding an answer. I met with the ophthalmologist who said, This isn’t MS! Next I met with the neurologist who said the same thing, This isn’t MS. I dont think this is neurological. I felt dismissed, like they didn’t address any of my concerns. Im supposed to return next month to see a Nephrologist(for the neurogenic bladder, high protein/creatine, and low eGRF), psychiatry/psychology, and Neurology, and I don’t think it would make a difference to my health if I were to go. I spent over a week and 5k last month and fly back home with more questions than questions. I feel like the neurologists I see are expecting to find MS and dont, so they send me on my way. I just saw a local neurologist last week who said, I dont know but you should try magnesium and tonic water. I dont want to drink milk of magnesium, I want to find out why my body/autonomic functions are failing on me in my 30s. I guess Im looking for some reasons on why I should go back.
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I am so, so sorry you are having all these problems. I respond because I absolutely feel your pain! I continually say my health journey is the most horrific and fascinating experience I could ever imagine, just to say I am by no means a medical expert. Rather, I am simply someone with some experience. To me, your experience sounds like progress to move forward from. If yours was a simple problem it would be solved by now, and you have a team of docs taking it on.
I wish we could sit down and have a conversation. I have a lot to say but am not sure what would be valuable for you. Mayo Clinic functions in a way that is not familiar to some places, and consequently they do not come up with the same results. I have found them to be conservative in their approach to problem solve, then aggressive to address when they are confident. It is so good that each doctor you saw there started with what your doctors provided from home and have all gotten on the same page. Did I read that correctly that your Mayo docs all told you the same thing?
I am glad to hear you say you don’t want to start experimenting with treatment options, and that you want to find out what is happening with you. This makes you a good fit with Mayo’s approach (not everyone is). In my experience, everything Mayo Clinic does helps me. Every appointment is valuable. It may not totally click with me at the time, but works because I am just as bought into the process as my providers. I am bought into the process because my they are helping me with what no one else has been able to and don and in a way that is super compassionate. The more they know about me, the more they can help me.
I cannot tell you how my appointments, and valuable time lost kicking the can down the road have been fruitless elsewhere going in circles. I cannot tell you how difficult it can get particularly when others around you may not agree with your approach. I can tell you how it feels to have a resource like Mayo Clinic respect me and provide hope for what is important to me. They come along side me, a step to the side and two steps ahead of me.
Hope this helps.