hi... I was diagnosed with sjogren 3 years ago and since then I have progressing neurological symptoms like:
balance problems-I'm off balance most of the time
muscles twitching
burning foots-that was solved by the ivig
muscles fatigue/weakness
the thing is i feel that my symptoms are progressing for the last 6 months and the new symptom is , my muscles get tight or stiff after the twitching for hours or even more, and beside of the twitching i can sometimes feel a sharp stabbing pain ( maybe its a small cramp)
anyone have similar symptoms?
your post scares me... im also off balance since one month but i thought( and my doctors also) thats probably labirintitis or meniere. im still doing tests, did you have an MRI??my does not show anything wrong
I had the symptoms you describe, Rgs, long ago. I have many neurological problems related to my Immune Disorder. Sjogren's itself is neurological damage to the moisture producing organs.
My advice is to keep a daily record of your health. That way you can see what has changed and what has developed.
And find a good medical team.
Regards, Elaine
hi...i have neuropathy. and i have most of your symptoms also and it's strange because they seemed to have come out of nowhere for me. the very first symptom i had was the off-balance feeling and yes it is very scary! then came the muscle twitches and tingling, burning feet/hands...you know the rest... oh and i definitely know about the sharp stabbing pains they are synonymous with neuropathy. reading your post to tell you the truth it sounds a lot like you have neuropathy as well. if you search online for neuropathic symptoms/pain you will see most of what you are experiencing listed there. i recommend you get yourself to a neurologist asap so you can start medication.
and which is the medicine for neuropathy? off balance?
Have you been checked for M.S.? Some of your symptoms, such as muscles tightening (known as spasticity), fatigue and weakness sound like those of M.S. FYI symptom list from the National Society for MS: https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms.
FYI 2 I'm not a doc and I have had SjS for about 10 years. I have been checked for M.S. as I had similar symptoms off and on. I have never been diagnosed with M.S. so please don't let my note above panic you, I'm just trying to provide info that might help.
Hi, the medication I take for the burning, stabbing, itching and other pains of neuropathy is Gabapentin.
I have had MS ruled out so many times I've lost count. But a good medical team will cover ALL the bases for the cause of neuropathy.
The Gabapentin doesn't help with the 'off balance' issues, which for me come from both severe nerve damage and ear damage from Meniere's.
We maintain balance through three points of reference: Our eyes, our ears and the nerves and muscles in our legs.
My ears are gone from Meniere's, and my legs provide no only no balance help, but actually misinformation for balance. At the health club when I put my head under the shower to rinse my hair, I fell backwards out of the shower because I lost all sources of reference for balance.
This happened twice, until I learned to stand with my back to the wall, not the shower curtain (duh).
Of course this was all before I knew I had neuropathy. I was slow to catch on, and my nerve damage in my legs was profound by the time I went to a neurologist, and I didn't go for my legs, I went for my headaches.
He had me walk, and told me I had serious Ataxia (staggering) and foot drop. Yikes, no wonder I was tripping and falling all the time.
Anyway, spinal tap showed no signs of MS...tons of genetic tests proved no genetic source of my neuropathy.
Best guess: damage to my organs/systems by my rogue immune system. The Gift that keeps on giving..
Hugs, Elaine