neuropathy

[Guest guest]

Hi Marcie,

What you are describing indeed sounds like something called Peripheral Neuropathy or Neuritis. It is an inflammation of the nerve endings. It is similar to the burning pain that Shingles patients report as well. It can be localized but is usually spread over a wider area of the body.

I suffer with this neuropathic pain. Sometimes the burning cramps in my calves are awful. Also feel pain in my tendons and ligaments -just under my knees with loud, constant crepitation in my knees. I also note that my legs will spasm and contract inwards, in an almost palsy-like position, just as you described. I do not have a clinical DX of MS- but am being worked up by a neuro for it and lower-limb myelopathy as well. I am still mobile and fairly active so if this is MS I would be in the very early stages?

There are many conditions that can cause Peripheral Neuropathy or Neuropathic pain. Even a temporary decrease in blood flow to a limb, finger or other extremity can affect the neural pathway causing permanent damage that results in sensations of pain.

My neuropathy seems tied to my Hashimoto's disease which is a thyroid autoimmunity- but I no longer have the gland, just the residual antibodies and a tiny ring of thyroid tissue- I had no radioactive iodine ablation. The pain came on almost overnight along with bladder urgency (no UTI ever found) just before I was Dx'd with the Hashi's. Some of my pain is muskuloskelatal but a lot of it is also sympathetic nerve system. I also know my neuropathy is connected to chronic pernicious B12 anemia. I do not have the anti-parietal cell antibodies- so the anemia is not autoimmune- but it is hereditary as all of the women on my maternal side have some form of mild anemia. I just happen to be the only one with B12 anemia. I take B12 injections, sometimes as often as every 5 days- but at least once a month - and it usually helps ease the burning sensation as well as masking some of the horrid fatigue from my HCV. Now if I could just get the spasms to stop! Stretching helps (Pilates is a favorite) and I also see a chiropractor regularily which relieves some of my other pain/headaches/TMJ as well. And I am the post-er with viral Hepatitis(HepC)...am initiating LDN therapy with Hypericin, a High grade extract of St. 's wort, to combat the virus. Hoping it helps with the neuro symptoms as well! My PCP is behind me 100% on trying this treatment. I am not looking for a cure- there is none for HCV- just remission and low to no viral count. My Hepatologist also told me he did not see any reason why I could not try the LDN/Hypericin treatment for atleast a year. Then, if no improvement to my condition(s) and viral count I should possibly consider another treatment. That would be the interferon which I really don't want to do.

Some of the other possible Dx's suggested to me for my aches, pains and other symptoms such as aphthous ulcers include:

Behcet's Disease (this is the most probably dx)

MS

Myelopathy (lower limb)

Fibromyalgia

Chronic Fatigue Syndrome (Epstein-Barr Virus)

But there are other conditions besides MS that can contribute to or cause Neuropathy. Undiagnosed hypothyroidism is in the top 10 list. Have you had an endocrinological work up? Or any hx of Thyroid trouble in your family?

Right now I am experiencing the burning sensation all over my body, especially upper extremities. It started about 5 days ago. At first I thought is was just a bit of a sunburn as two of my meds cause sun sensitivity. But after staying indoors or well-covered and sunscreened for the last few days I still have the burning, stinging sensation. It is worse on my shoulders, neck, upper arms and tops of both hands. I am pretty sure it is the neuropathy, just relocated to a new area. So I went in and got a B12 shot yesterday. Already feeling a bit better. You might try the B12 treatment and see if it helps you? Good luck. I know Neuropathic pain is hard to deal with emotionally and physically.

Side note: SammyJo and I have chatted about this privately but I know there are a few lurkers on this board wanting to know about my experiences as I treat my HepC. I had to halt my LDN therapy for now until I can detox the last traces of pain meds out of my system. I had a bad reaction to the LDN during the first 5 days of treatment. My doc and I figured it had to be the pain meds which I have been on and off of for the last year or so. I am detoxing the opiate-based meds out of my system and then will restart the LDN. But even without the LDN I have kept up the antiviral portion vigilantly. I am taking 7 capsules of Pacific BioLogics HY2 supplement every night with a light snack. I'll keep you all posted on my progress when I commence the LDN again. My target dose is 3.0 mgs.I will try to post my viral loads pre-LDN and as I get them checked over the course of the next year.

To Dr. RLS : I am still very interested in the ultra-low-dose therapy you mentioned for pain management. I sent you a message or two and would love to have a conversation with you. Chronic pain has been a sometimes debilitating monster for the last 22 months and I am eager to find a way to halt it!

To all: I have no unrealistic ideas that LDN is a cure for anything. I think it is just a good therapy that can help the body rebalance itself, allowing each individual's system to heal. It gives us all hope and that is good medicine too!

Best all around,

Lara in Sunny Seattle