Hi everyone, it's me again. I'm still waiting on some test results as there was some kind of mix-up with the company doing my "Early Sjogrens" test. All of my other typical blood tests have been totally normal despite numerous symptoms.
Lately I've been experiencing a mild buzzing in both of my feet. When it first started, it was very strong, like I was standing on a cell phone that was vibrating. Now, a few weeks later, it's more intermittent and feels more like I can feel the sensation of blood pumping through my feet and like tiny muscle twitches inside. Last night this really freaked me out because I had a sort of stabbing feeling in my heel along with it, like I'd been poked with a needle. It didn't last long, but I just felt it again this morning and I'm worried about peripheral neuropathy.
Is peripheral neuropathy inevitable with Sjogrens? Are there drugs that actually work for the tingling/buzzing sensations? I've heard there are many drugs for the nerve pain, but I haven't heard much about ways to treat the other sensations. I'm not sure this is even Sjogrens, and if I do have it, these symptoms might not be related, but I'd like to know just in case. Thanks everyone, the info is much appreciated!
Deseree,
I am sorry that you are still waiting on results, the not knowing is in some ways far more difficult than having a diagnosis.
I don't know that neuropathy is inevitable with SjS, but I do know that many of those with SJS have it. Neuropathy is very poorly understood in general and cannot be cured, but is treatable. There are many drugs which can be tried and which provide relief, though I know some on list suffer despite those options because they don't work for them.
Here's hoping you get some results soon.
Hi Deseree
Sjogren is of two types.
Neuro sjogren : 20% have this : entire body is under attack.
Normal sjogren : 80% have this : entire body except nervous system is attacked.
So only 20% of total sjogren patients have neurogical diseases.
For most neuro sjogren patients, neurogical diseases appear first and the typical sicca symptoms starts later.
10% of normal sjogren patients are seronegative.
80% of neuro sjogren patients are seronegative.
If you have dry eyes, get the rps inflammadry test done. This is a very good early indictor of sjogren.
B vitamins are supposed to be good for alleviating and preventing neuropathy.
Yes vitamin b12 is very good. A lot of sjogren patients have absorption deficiency. So better to take b12 strips which are kept under the tongue. This directly gets absorbed into blood stream.
Also vitamin b1 and folic acids are also needed in small doses for nerve repair. So a good multivitamin will do this job.
It takes 4 to 8 weeks for nerve repairs. So you need to have patience.
Hi - can you point me to the background for this assessment (about neuro sjogren)? I've tried to keep on top of current literature, and don't remember anything like this.
Thanks
Quote from: happylife on November 24, 2018, 08:35:37 PM
Hi Deseree
Sjogren is of two types.
Neuro sjogren : 20% have this : entire body is under attack.
Normal sjogren : 80% have this : entire body except nervous system is attacked.
So only 20% of total sjogren patients have neurogical diseases.
For most neuro sjogren patients, neurogical diseases appear first and the typical sicca symptoms starts later.
10% of normal sjogren patients are seronegative.
80% of neuro sjogren patients are seronegative.
If you have dry eyes, get the rps inflammadry test done. This is a very good early indictor of sjogren.
My post may not be very helpful, as I have no definite diagnosis yet, all blood tests having been negative. However when my sicca symptoms got going in 2015, I had that same type of buzzing feeling in my feet intermittently. As it all started together, I suspect it is probably part of the same syndrome.
I still get it intermittently, but to be honest I don't worry about it at the moment, other symptoms are more of a problem.
Quote from: warmwaters on November 26, 2018, 09:01:09 PM
Hi - can you point me to the background for this assessment (about neuro sjogren)? I've tried to keep on top of current literature, and don't remember anything like this.
Thanks
Quote from: happylife on November 24, 2018, 08:35:37 PM
Hi Deseree
Sjogren is of two types.
Neuro sjogren : 20% have this : entire body is under attack.
Normal sjogren : 80% have this : entire body except nervous system is attacked.
So only 20% of total sjogren patients have neurogical diseases.
For most neuro sjogren patients, neurogical diseases appear first and the typical sicca symptoms starts later.
10% of normal sjogren patients are seronegative.
80% of neuro sjogren patients are seronegative.
If you have dry eyes, get the rps inflammadry test done. This is a very good early indictor of sjogren.
PFB the link to the long term neuro sjogren study.
https://www.ncbi.nlm.nih.gov/m/pubmed/15342972/