Hi Kristin! What I think you are saying about the Demylinating and Remylinating . The best I can explain is that you have a certain type of neuropathy that regenerates itself. This is how I started out years ago when I was not fully diagnosed with Lupus. I went in for an EMG and the first one showed nerve damage like MS and was not that great of a result. Next time I went in and my EMG result showed improvements. That was with the Lupus and Neuropathy back then. I did the same thing where I got all bad off and could not walk and then a year later improved. What it sounds like to me is that you have nerves that are showing more damage in other areas that are demylinating and then some of the nerves you have that were bad at one time ave regenerated! So you have a slow progression type of nerve damage going on. Kristin! The nerve biopsy is really not that bad. I didn’t even notice a numbness in my leg after they did the biopsy! Where they do it at does not effecting your walking once you are healed up which usually takes about 6 weeks. Small tiny scar that will fade out in due time. That biopsy would rule out alot of diseases. Stopping labs you would not need. Skin biopsies are mainly only used at a Dermatologist and that would be to rule out diseases like Lupus, Scleroderma, Acute Intermittent Porphyria! They would show small fiber neuropathies! It sounds like the treatment you had last year did do the job making you get better! But you are still showing a neuropathy that is still doing damage but in a minor way where you don’t notice it.
When my nerve damage starts demylinating, I can tell right off the bat! Due to having this stinken mess so many years! I will get numbness and tingling in that area. Back then when it was mild doing damage, the best way I can describe it would be where my hand or leg would feel like it was falling asleep and did not want to wake up. Would shake it around and then the feeling would come back. And I would have a spell of feeling more tired that day! Then the next day I would feel okay! When you were having to use a cane back then, you have a pretty bad demylinating process going on. Causing muscle weakness and that was most likely snnsory/motor nerve going on. Later on though this stuff I had went into CNS Lupus and then it went into CIDP! But I strongly would advise that nerve biopsy! You might want to wait but if you get a second attack of this stuff, then get that nerve biopsy! Hope my advise helped! Hugs my friend! Glad to see you walking!
I get the all natural organic Pomegrante juice but it is rather twangy! I add alot of ice cubes to my glass and thin it down just a tiny bit with water. That helps get rid of that twang. It is lip puckering juice though. First taste makes your lips smack! LOL! Hugs! Never tried the Akai Berry before! Hmm! Might try that out. I even have to water down Grape Juice because it is too twangy. Orange juice too!
Hi Kristin! I was diagnosed with Thyroid Cancer but had Graves Disease also and didn’t know it .Plus I had a Multinodular Goiter and one of the nodules had cancer. I too have lupus and all summer long have been on high doses of steroids. 20mgs plus! I have very high cholesterol and not only having graves but was Cushingnoid from the steroids. Lets just say my hormones are out of whack. The sugar craving too I had something aweful and still do! I love the sugar! I before diagnosed was also diagnosed with Hypoglycemia. But have had that since I was a teen. Still have it! By what I see on my papers here, they have me on a Carbohydrate Diet! The Endocronologist also told me no Soy products, no cabbage, no brussel sprouts or califlower or broccoli. And told me to stay away from Chinese foods I guess because they have alot of Starch in their cooking. They gave me the diet before my surgery and this is what he wants me doing. I asked him why I could not have the veggies and he told me these particular vegetables cause goiterins and can mess up your thyroid levels. Now in a few weeks after my treatment my diet may change but right now, I’m not allowed these types of foods. Can have spinach, collards, string beans, tomatoes but no veggies above that I listed but can eat any other vegetable but have to stay away from those that I listed. I tried to find something online about these vegetables and a thyroid diet and did find something that the doctor mentioned. Still did not understand the concept of why these vegetables cause problems, but they do! I will go back online and see where I found that article and post it here for you to read! Before my surgery I was Hyperthyroid and now my thyroid has just been recently removed. So that will put me Hypo instead. Still not sure why I would go Hypo and confused about that too! Because I don’t have the thyroid gland anymore is probably why! I will try and retrieve what I found and post it online. So your thyroid caused your CIDP also? See I have CIDP and they told me it wasn’t lupus causing it but I was swearing up and down it was because I had this nerve damage before when I first got diagnosed before. But this type of nerve damage seems to be a little different. Burning in my hands and feet. Actually burning everywhere! Your thyroid caused your system to be demylenated? I have a demylenating neuropathy! Maybe this has been my problem here all along. How are they treating you for this problem? Especially for the demylenating problem! Can it even be treated or does it stay and never heal up? I was told that I will always be Hypo now instead of Hyper. But am still learning it all! I know Lupus very well but learning the Thyroid is another story! I did find an article about CIDP and the thyroid a while ago a read something but was not sure about the article.
Hope this answers some of your confusion here with me. I right now am still confused about it! The more I read the more confusing it gets. I’m just doing what the doctor ordered. Now let me see if I can find that article!