Author Topic: Advice re: Neuro Symptoms and Testing  (Read 2440 times)


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Advice re: Neuro Symptoms and Testing
« on: March 29, 2021, 10:52:26 AM »

Hope everyone is doing OK. Wondered if I could pick some brains about my neuro symptoms?

I'm 35 and male. Had sj?gren's symptoms for approaching 7 years diagnosed officially as seronegative sjogrens last year.  I've been on Pilocarpine and betahistine(dizziness) for a number of years now along with my preservative free eye drops etc. Started 400mg of Hydroxychloroquine in September.

In November I developed what I am assuming is neuropathy. Started with issues with the toes on my left foot and progressed to a feeling like my bones are vibrating all the way down my left leg. I get pain in my foot pads and arches as well as a strain like weird feeling in my left shin and lots of muscle twitching. I have also developed a sort of turning-in and slight shrinkage of my big toe on that foot and dryness of the pad of skin underneath the toes on that foot.

I've seen a neuro and my b12 is fine. Had a nerve conduction test today and awaiting the results, although the consultant kindly told me nothing major jumping out at him from the conduction study or EMG.  He still needs to have a closer look and send to my neuro.

Realised this wasn't a quick question in the end sorry!! What I am wondering specifically is:

1. Does what I'm describing sound remotely like neuropathy from sj?gren's? Consultant seemed to think since it's only left sided it was unlikely.

2. I know there is significant crossover between different autoimmune conditions - is their a common link with MS or is it just that sjogrens can mimic MS if the inflammation gets to the right place.

3. If the nerve conduction and emg results come back completely normal - are my symptoms indicative of small fibre neuropathy? This seems to be common enough among fellow sjoggies.

Would love to know what people think - anyone with similar symptoms out there? Specifically one sided issues!

Sending you all positive vibes for a flare free Easter!


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Re: Advice re: Neuro Symptoms and Testing
« Reply #1 on: October 19, 2021, 05:47:09 PM »
Hi! I?m having similar twitching. How are you now?


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Re: Advice re: Neuro Symptoms and Testing
« Reply #2 on: October 19, 2021, 10:18:12 PM »
I have some on and off neuropathy and have 5 autoimmune diseases so assume it is from one of them or all of them. I do have diabetes also so that could be involved somewhat. I have Myasthenia Travis which is a neurological autoimmune disease and suffer from weakness, etc. The treatment for this is IVIG and I have been on this since 2006 every month.

Sjogrens can be mistaken for MS and the test that sorts this out is usually a Brain MRI. Sjogrens and MS can give the doctors a run for the money diagnostically. You may have to see a neuro that specializes in MS. It gets so things can be so specialized that it drives us crazy plus takes time and money. And, yes, Sjogrens patients have small fiber neuropathy quite often.

If you are having problems getting this issue diagnosed and treated it may be wise to see a second neurologist for another opinion. I know this gets old but every doctor sees different patients and has different experiences with neuropathies so it helps to see other doctors as chances of getting diagnosed increase. I say this because it took me from 1964 to 2002 to get my first autoimmune disease diagnosed and then 2003 got sjogrens diagnosed then 2006 it was Myasthenia Travis and Hashimotos and then in 2016 finally got the autoimmune hearing loss diagnosed. I had suffered from symptoms from most of them since 1964 and others later down the road but the hearing loss was 20 years before the blood work was available to sort it out. We really need patience when we have autoimmune diseases that is for sure.

Yes, you can have another autoimmune disease that could accompany the Sjogrens and this makes for more confusion in diagnosing the problem. Sorry I can't give you a cut and dried answer but as you well know autoimmune is really a crap shoot when it comes to finding the right doctor and then being able to show him the symptoms plus it is so hard to explain what we suffer from much of the time. It can help a lot to keep a log of all your symptoms, days, times, length of the event, what you do to help problem improve or at least become more tolerable. This is hard to do but if you keep a note book specifically for the events and keep it in a handy place it helps.

I hope that you can find out more about what is going on as this sounds pretty miserable. I would be very adamant about finding a doctor who could diagnose you as there are some diseases that are on the list for getting IVIG as a treatment. The treatment for neuropathies is much often different than the IV drugs given for the Sjogrens. Good luck and I hope you find help. It would be great if you stop in at times and update the forum as I would guess there are quite a few with similar issues. Thanks. meirish


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Re: Advice re: Neuro Symptoms and Testing
« Reply #3 on: November 01, 2021, 03:20:15 AM »
new_sjo, Haven't heard from you lately and just wondering if you have gotten any help with your Sjogrens and ailments. Thought I would just bite the bullet and ask how your are doing. meirish


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Re: Advice re: Neuro Symptoms and Testing
« Reply #4 on: November 04, 2021, 07:52:18 PM »
At the age of 45 years, I had a sudden onset of severe foot & leg pain. I was seen by a Neurologist at an academic center who diagnosed a painful peripheral neuropathy.
I then was seen by multiple doctors, including a Rheumatologist, but no cause was found. I was then started on Carbamazepine, which helped the pain.
Years later my GP  diagnosed Sjögren's Syndrome. I was stable for 10 years, but as time went on, I slowly worsened with a Trigeminal neuralgia, low gamma globulin & recently a terrible
Myositis. This myositis is called "Inclusion Body Myositis" and is caused by Sjögren's. But yet, I continue to hang on.

Follow-up 12/04/21
I thought that it was time for a progress report.
I have given up seeing Internists & General Rheumatologists. My main physician turned out to be a Neurologist who is sub-specialized in Muscle Diseases i.e. Polymyositis, Inclusion Body Myositis & Overlap Myositis amongst others. Of course, she is not treating me, because there is no effective cure. I receive long courses of Physical Therapy, which has not helped me much.

IBM develops slowly, progressively and painlessly over years, leading to a mainly asymmetric paresis. The flexion of hand and fingers and knee extension are typically affected. In my case the disease is progressing much more rapidly than the usual cases. I am now partially paraplegic, & will be in a wheelchair soon. My hands are getting much weaker, and I cannot hold a full cup of coffee. I have intermittent dysphagia, and Trigeminal Neuralgia. The Sjögren's Syndrome continues unabated with very dry mucous membranes and brain fog.

I have an appointment in January 2022 to see an even more specialized Neurologist, who may try Bimagrumab, Activin receptor II (ARII) or Inhibitory monoclonal antibody. All these are experimental.

Thank you for reading about this distressing disease.
My Blood Chemistry shows no elevation of CK (Creatinine Kinase), which is puzzling to my Rheumatologist.
This has never been solved.
Early in Sjogrens Syndrome, I had CK levels of over 3000 Units.
Another puzzle was an extremely high Monocyte count of up to five times normal. This remains unexplained, but I need a bone marrow aspiration for further evaluation.
I have refused this.
Another puzzle:
I suffer from a severe cognitive impairment, more than the Doctors' expect. It caused me to have to retire at age 56 years. The only way I could get around this was to use Adderall routinely, when I knew that I would be stressed. I was amazed at the ignorance of Rheumatologists regarding this severe symptom. It could mean that Sjogrens has a severe Neurological component, perhaps a cerebritis. Sjogren's Fog is probably related to this, I think.

Thank you. Happy New Year.

« Last Edit: December 28, 2021, 07:50:01 PM by vrystaat »
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


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Re: Advice re: Neuro Symptoms and Testing
« Reply #5 on: November 23, 2021, 07:32:47 AM »
Hi there.

I am 63 and have had symptoms such as yours since I was in my 30s. Back then my GP said it was anxiety. I never mentioned it to anyone again. In my mid 40s terrible dry eyes....very thirsty.. Age 52 hip pain...blood work positive for sjogrens and RA.

Today, I still have balance issues, feels at times there is a string tied around my big toe on left foot. I have a burning pain in the tips of my toes with occasional jabs in toe tips, like done by a needle. A couple times I had a feeling of warm water gushing down my inner legs, like my bladder let go,

I would like to know how your tests came out? How are you?

medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***


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Re: Advice re: Neuro Symptoms and Testing
« Reply #6 on: November 24, 2021, 01:11:09 PM »
Just a sidelight......I have had dizziness since around late 1980's and it got worse in the 90's. I have since had benign postural (dizziness) diagnosis plus a couple of other diagnoses that have dizziness with them. I am of the opinion after doing a lot of research that balance issues are very common in sjogrens plus also problematic in hypothyroidism with Hashimotos which I also have.

I would guess that many of the autoimmune diseases include a balance type problem and the diagnosis helps plus getting a good neuro to isolate the issues can help when it comes to treatment,. These are my experiences and would be interested in what other people have found to be the case in their disease processes. Happy Thanksgiving. meirish