Hi All! I am new here and hesitant to jump into the conversations because I don't have firm diagnosis. I am pleased with all the information available here so thank you! I have been suffering from something for a year and half now with little answers. I have been through all of the testing for neurological issues with the exception of probably some bloods tests. My biggest issue at the moment is extreme weakness in my lower legs and feet from the knees down. This makes it very difficult for me to stand for any amount of time. Walking is a little easier but still painful. If I have to stand to make dinner or wait in line somewhere it is pretty much unbearable. So I have learned ways to adapt even though it's very annoying. I do know that I have peripheral neuropathy but I am convinced it's more than that. Up until November of last year I had only nerve pain...burning, tinging, and numbness primarily in my legs and occasionally in my hands though I couldn't figure out a pattern for that. I also suffer from gerd and blurred vision, headaches, brain fog, muscle twitching from my head to my feet, and lightheadedness. Occasionally I get some swelling in my feet. I most recently started taking vitamins to try and help relieve some symptoms and so far they seem to be helping with the nerve pain but not the weakness. This is progressing fast and I can't help but fear what the future holds for me. I have not had any treatment other than a taking Klonopin for a few months which I feel is what triggered the weakness for me. I took myself off of that. If anyone has advice or thoughts on what I might be able to do for myself to fight this it would be greatly appreciated. I am 25 with a 2 year old son and would like to try and stay well for him.
Welcome. Your progression sounds a lot like mine. I started with pain, numbness and tingling in my feet. Only after about a year did I start to get serious weakness. That was when I first saw a neurologist. Fortunately, he diagnosed me pretty quickly.
Have you seen a neurologist? If so, has he done a nerve conduction test? If not, I would try to get that done right away. You probably don’t have an old nerve conduction test for comparison, but it would give him some idea of myelin loss (nerve damage) and could serve as a baseline for future tests.
Hi there! Thanks for your responses. I actually don't think I have had a nerve conduction study. I have had several MRI's, evoked potentials, and EMG's. I have lesions on my brain but not consistent with MS and the fact that my symptoms are progressing lead my neurologist to think it might be CIDP. So far I have not gotten a second opinion. My current insurance only allows for me to see one of 2 neuro's in the office. However I am switiching insurance next month so I already have an appointment lined up with a neuromusclar specialist. Hopefully she can shed some light on all of this. Uncle Bill - once you had your diagnosis did you receive treatment of any kind? My biggest fear right now is that I won't be able to walk soon as it gets more difficult each day.
Thanks again!
Yes, I was very fortunate. My neurologist admitted me to the hospital the same day he diagnosed me, and started IVIG that afternoon. It worked almost like a miracle for me, I think largely because it was started so soon. In 5 days I was home, and feeling much stronger. Unfortunately, with CIDP the problem recurs, and I have had to have regular IVIG since then. Later, he added Imuran, which has allowed me to lengthen the interval between IVIG treatments. I am hopeful of being able to get off the IVIG permanently this year.
Bill
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Your story sounds very close to mine. I woke up four years ago with numb feet and had no symptoms before that. I have gone through a myriad of tests and have Peripheral Neuropathy ad my diagnosis as well. Now, both hands and feet above ankles are heavily involved and very painful. They are basically throwing opiates Bme for pain because nothing else seems to work. I am seeing my 7th Neurologist this Friday and feel that if he doesn't give me something to relieve this I don't know what I'm going to do or where to turn. It is very scary and I understand your fear. Although I am 55, I am not ready to go anywhere either. But, at times it feels so hopeless. I take Klonopin because it kind of helps with the the anxiety I feel waiting for the pain to become a 10. I also take Lyrica, Percocet, Nucynta and Baclofen for my Neuropathy pain. Nothing really helps. I have diabetes so they think it's related to that, but that I have another kind of Neuropathy that is still unidentified. I understand your frustration. Have you had a nerve biopsy or conduction test?
Lots of good advice already. I would just re-emphasize that the sooner you get a diagnosis and start treatment, the better. I wish our doctors could feel the same sense of urgency that we do!
I hope your new neurologist is agressive about getting you on treatment. Good luck.
I agree - push your doctors to get you on treatment asap - its WORTH it.
Of course if it works for you, but worth a try. Stay strong.