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robge (@robge)

Just diagnosed....continue testing for causes

Neuropathy | Last Active: Feb 23, 2019 | Replies (17)

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@rogbe, I just returned from my first trip to the Mayo. I was there for a week and underwent a medical evaluation with several tests to figure out what is going on. I am a couple of months shy of turning 50 and three years ago, I started with tingling in my arms, wrists and hands. It has progressed to my feet, ankles and lower legs. It is extreme tingling that feels as if i am being pricked with needles and then someone burning the needles. I have explained the excruciating pain as if someone has poured ants or bees on my extremities. Nothing helps with the pain not the medications or the cremes that they have put me on. I saw a Rheumatologist and Neurologist locally and after a year of trying different medications and treatments, they referred me to the Mayo.

I have been diagnosed with Raynauds in my hands and feet. I have a consistent low WBC and even had a bone marrow biopsy to check for Leukaemia. I was negative. The labs they took at the clinic showed low Leukocytes, Neutrophils,Lymphocyted and Monocytes. Although, this has been consistent in my blood work for years.

When the pain starts, I call them "episodes." I have episodes in the morning that are manageable and do not last for long periods of time. I get through them by moving my feet side to side and dance around while I prepare for my workday. My worst episodes are after a shower/bath. They are so extreme. I am not sure why water is a trigger. Although i can wash my hands and face and not ever have an episode. i drink water all day without issues as well. I now only take a full shower twice a week and have to sponge bath the other days. The pain is so severe that I am not able to prepare and put myself through it everyday. When the episodes happen after a bath, I usually run in place until i cant and then I ice my legs and arms until the sensation starts to ease. I layer my legs and arms with ice packs. Probably not good for my skin but it has been the only way to get through it. Episodes have now started to take p[lace in the day time and at night.

I have been on all the medications but nothing seems to work. I go back to the Mayo in April to see a Neurologist and a Hematologist. I am trying to stay positive but its difficult when i spent so much money on this last trip and no solutions or treatments were reached. I dont want to sound like I am not grateful for the things they did rule out but I was hoping to get a little relief. I have lots of faith in the doctors there and continue to pray that "This too shall pass." I am trying to research on my own about SFN and start trying to see how i can help myself. I have not been diagnosed with SFN but I believe that is what they will be looking at in April.

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Replies to "@rogbe, I just returned from my first trip to the Mayo. I was there for a..."

Hello @ irmaida thanks for your reply. Sorry to hear that you are in so much pain. I have the tingling and numbness in my fingers, feet, and legs, but luckily not the pain. Thanks for the tips on how you manage the pain. Glad the ice packs are helping. I read online about heat and heating pads, but it seems that might not work for you.

So sorry to hear that you did not find answers. That is difficult and disheartening. I am also trying to educate myself and see if there is anything I can do to slow the progression, if that is possible. I do hope this will pass and everyone experiencing this can find the answers and relief we are all looking for.

Thanks for your responses.