Author Topic: Anyone with polyneuropathy?  (Read 304 times)

SjoGirl

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Anyone with polyneuropathy?
« on: June 11, 2020, 05:02:15 PM »
Hello all,

It's been a very long time since I have been on the list. I have been doing very well but of late have been experiencing bouts of weakness in one of my feet, it will just go out on me when I step on it. I had an EMG yesterday and the report says idiopathic Polyneuropathy. I had already been diagnosed with this on my left side, now I have it on the right (or it is just bad enough that they tested for it).

Do any of you have this? If so have you tried any treatments and what worked?

Thanks.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Linda196

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Re: Anyone with polyneuropathy?
« Reply #1 on: June 12, 2020, 03:24:15 AM »
I've had it since before my diagnosis of Sjogren's, probably due to Sarcoidosis in my case, but it may have actually been the first symptom of Sjo, who knows? If they could decide which one caused it, it would no longer be ideopathic I guess LOL.
Mine ranges from tolerable to manageable, and I only take acetaminophen for pain, occasionally combined with low doses of codeine (in Canada we can get tylenol #1, a lower dose of codeine than T3, OTC, as long as it's registered and not purchased too frequently)
Sometimes, in the tolerable range but just getting annoying, I'll apply heat to the affected area with some relief, or, if it's my legs, I'll do a foot soak with lavender and Epsom salts. I also try to maintain a high normal range for Vitamin B6 and 12, and thiamine, which can't hurt and may be beneficial, right?
Now I'm finding it's getting complicated by spinal changes causing nerve damage, so it's difficult to map the neuropathy from the new changes, because there is an overlap with what was already there
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vrystaat

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Re: Anyone with polyneuropathy?
« Reply #2 on: June 14, 2020, 01:11:23 PM »
I started out my illness with sudden Polyneuropathy. This started in my legs, and was very painful.
I gradually became worse, developing Trigeminal neuralgia and developing neuropathy in arms, hands & face.
I was then accepted as having Sjogren's Syndrome.
Then 10 years later, I developed Polymyositis which nearly crippled me. My blood chemistry (Creatinine kinase), became very high.
Go forward to 10 years later and after a long search, I found a Rheumatologist to take my case. She started me on IVIG and now I'm 50% better.
This relentless disease is very disabling. Finding a good Rheumatologist is key.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

SjoGirl

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Re: Anyone with polyneuropathy?
« Reply #3 on: June 16, 2020, 05:55:56 AM »
Thank you both this is very helpful information. It would be marvelous if they could find the cause.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

Carolina

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Re: Anyone with polyneuropathy?
« Reply #4 on: June 19, 2020, 05:59:05 AM »
Hi I have neuropathy everywhere.  I am completely disabled: braces and a walker.  My sjogren’s is the result of nerve  damage as is my meniere’s.  I have damage to my lungs gastrointestinal system, bladder legs and feet and all of my skin (small fiber neuropathy).

Mt Duke neurologist says that my immune system attacks and damages the nerves in my organs and systems probably with cytokines.

I have 35 grams of IVIG every four weeks because my immune system is also deficient in IgG and IgM.  This IVIG doesn’t help my neuropathy which is getting worse.

Regards Elaine
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-

trc1962

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Re: Anyone with polyneuropathy?
« Reply #5 on: June 28, 2020, 10:07:16 AM »
I have experienced neuropathy all over, but it has also gone to specific locations. Developing neuropathy was how I began to get treatment for  sjogrens. A really good neurologist figured it out as he was treating me for the neuropathy. My neuropathy was in both hands and legs, but was especially bad in my left quad. The neuro put me on 400 mg of gabapentin so I could sleep at night (my leg would get warm and crawly feelings). I also couldn't let hot water from the shower hit the leg or it would spasm. Because they thought I might have MS they sent me to big MS doc in town and I told him about the spasms and he said it is a circulation problem. I was started on Imuran in August and by late November I was completely in remission. I still have neuropathic pain but is isn't bad, 100 mg gabapentin and I am good. Hoping your foot gets better.

SjoGirl

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Re: Anyone with polyneuropathy?
« Reply #6 on: June 29, 2020, 02:31:29 PM »
Hello all,

Thanks again for your comments and for sharing your stories. I ache when I read what you have been through but I am glad to hear that most of you are as well as possible.

After I pressed for more information my neurologist finally told me that I have sensorimotor polyneuropathy and that the only treatment is for pain or to control inflammation. I'm already on Imuran so he said no change there. He has suggested Gabapentin but I've taken it twice and it makes me terribly bloated that I have to quit by six months in then I urinate buckets for a week. My tremors actually also get worse on it. I'm seeing if he can offer an alternative.

I do appreciate the comments, it can feel lonely at times with this.

SjoGirl
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.