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Old 10-16-2023, 04:45 PM #11
Lara Lara is offline
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Lara Lara is offline
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Originally Posted by RationalBeing View Post
...
As for your daughter - I had Mononucleosis as a child so I do suspect covid may have done something with EBV in me, not sure. How did your daughter cure her ME/CFS? Was it just time? I don't seem to have chronic fatigue, just this entire body neuropathy.
Well, she's never really fully recovered with the fatigue part but certainly much better over the years. She certainly isn't very resilient either. It changed her. There are a number of people who used to post here a lot with full body neuropathy although not actually caused by Covid like your situation. It obviously has done something to your immune system. I can't figure out why so much money gets spent on certain crappy things yet they can't figure out how to help people with this disease.

I can't imagine how it must feel all over your body. Would be horrific. I felt pretty good yesterday but did over-do it a lot. Today I'm having a huge flare. I get sick of trying to work out what's caused the flare but I should feel good that I'm not too bad compared with so many people.
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Old 10-16-2023, 10:20 PM #12
RationalBeing RationalBeing is offline
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Well, she's never really fully recovered with the fatigue part but certainly much better over the years. She certainly isn't very resilient either. It changed her. There are a number of people who used to post here a lot with full body neuropathy although not actually caused by Covid like your situation. It obviously has done something to your immune system. I can't figure out why so much money gets spent on certain crappy things yet they can't figure out how to help people with this disease.

I can't imagine how it must feel all over your body. Would be horrific. I felt pretty good yesterday but did over-do it a lot. Today I'm having a huge flare. I get sick of trying to work out what's caused the flare but I should feel good that I'm not too bad compared with so many people.
Ahh so there are other people with full body neuropathy. I wonder if they got cured and that is why they stopped posting. I'll do some searching. Yes, the full body numbness is almost impossible to deal with. It is like god or the universe is testing me directly.

What is your affliction Lara? 15 years of posting, have you seen any improvement? I really thank you for replying to me. You have helped me immensely with information and support, and I"m sure you have done the same for many others.
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Old 10-17-2023, 02:42 PM #13
Lara Lara is offline
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Actually I'm pretty new to neuropathy compared with many here but always read here when I could. Lots of invaluable information has been posted over the years. I've only had the PN since around August 2019. I have been in treatment for metastatic melanoma (stage 4). So it had spread in many places.

The first treatment that was tried was a combo of 2 drugs called Targeted Therapy. They target specific genes and the MEK protein. I have mutation in BRAF. I wasn't able to continue that after about 10 days approx. as it made me extremely ill in hospital. Dabrafenib and Mekinist.

The PN began almost immediately and it was sudden and horrible. Swelling and pain started in toes and up legs, same with finger tips and lower arms. I then began a long and exhausting few years on a different treatment called Keytruda, an Immunotherapy. Currently "no evidence of disease" but scanned constantly. Drives me insane. My neuropathy hit a plateau for some time but has progressed again now. Up until not long ago I was able to do pretty much everything. I just worked around my neuropathy flare ups. I think the physical hard yard work that I did actually helped me through the past few years in treatment. Kept me strong physically plus eat to suit my body the best that I can. That helps, plus good shoes!!! Now I can't do so much unfortunately.

I've been around for a long time on the forums as have many others. Many of us had children of the same age and we were supporting each other as they were dealing with certain conditions and differences that were affecting their lives. Some of us hung around dealing with our own conditions.

thankyou for the thanks and for asking. Always happy to try to help if I can.
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Old 12-02-2023, 05:45 AM #14
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Just an update for the threat:

I recently tested positive for ANTI-MAG antibodies. I did not do an ELISA test, but an antibodies in blood test. My result was 46ng/ml with reference range of 0-3, so way way out of range. I am only 43 years old and have been suffering through 10 months of whole body neuropathy thought to be caused by covid.

I do have spasms in my left leg in addition to the loss of sensation on all skin and in my gums too. Could be early symptoms.

I will try to do an ELISA test if one is available, as soon as possible
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