Pins and Needles

I get these and everywhere. I was checked for MS 4 years ago and they found paired bands which shows only that a systemic process was occurring rather than MS. Now this makes sense as Sjögren’s related. I have to say that I actually think it would be much easier if it was MS because others would understand more and there would be support and therapies I could benefit from. Now I’m seeing my Gp about Trigeminal Neuralgia and ocipital Neuralgia and 101 other things that they say are part of a very complex autoimmune disease. They admit they don’t really understand how I’m so badly affected because it’s only in my small nerve fibres not CNS.

My ESR and CRP are always high but they say this is just Sjögren’s making me very viscose nothing to worry about. But I’m afraid I still do! 

Hi Christine,

Obviously I can't say your tingling and twitching isn't down to MS. However, I would echo aitarg's warnings about not automatically assuming the worst after perusing the internet for a couple of hours.

Both symptoms are commonly suffered by people with Sjogren's. Pins and needles along with frequent attacks of numbness in the extremities were what I'd identify as my second SS symptom, starting more than 20 years ago. (The first was dry mouth.) The problem comes and goes, along with my other SS symptoms, though I'd say it's tending to get worse over time, especially in the past year or so.

As a former neuro nurse, I don't have the slightest concerns that my own symptoms are down to MS. Given that I've now had them for over 20 years, I'd be totally disabled by now (at the very least) if they were!

In recent years I've started to get occasional attacks of myoclonus. By this I mean little involuntary muscle jerks, mainly in my arms but sometimes in my legs. I'm not referring to the hypnic jerks we all get just as we're falling asleep, btw. These are completely normal. I'm talking about sudden muscle jerks during the day. I don't know whether these are down to Sjogren's or not, but I can't say they're getting any worse so I just ignore them. I've noticed that they seem to happen more often when I'm tired or stressed.

Some people refer to the phenomenon of fasciculation as "muscle jerks" but this is slightly different. It's a more prolonged episode of contraction of tiny muscle fibres, usually just under the skin. It can go on for up to a minute or two at a time, and can often be seen with the naked eye. I think I've always had fasciculation - I can remember being intrigued by it as a child - and I sometimes go through periods when it happens more often. Recently, during a period of extreme dryness of one eye, I suffered a lot of blepharospasm, though it seems to be easing off now. This is a form of fasciculation that affects the upper eyelids, and is extremely noticeable. The affected eye will sometimes close completely for a minute or so - which can be a bit embarrassing if you're in public!

It's true of course that all the above are among the early symptoms of MS. However, you can't turn it on its head and assume that because you have the symptoms you must have MS. Things just don't work that way. MS is only one of the conditions that can produce these symptoms, and is among the least common causes. Given that you clearly have SS, and all these are among the symptoms of SS, don't you think this might be the most likely reason?

All my blood work normal too. I have twitching all morning When I am tired I have it all day.  I am so glad you posted this I now have pins and needles on left side of face and numbness all the time which is new since I saw Dr on Monday.  She insisted I do not have Sjogren's because bloodwork normal. Except on the ESR 2 pts higher but nothing to worry about She says. TY Christine63572 I don't take any meds except Lyrica  and prednisone.  I can stand these symptoms and no one listening to me Now a bone marrow I need because they go by bloodwork

But I do tell myself now that if it turns out I have Parkinson’s or MS then at least these are known quantities and I will deal with them. What is so hard is the not knowing what is wrong. Maybe we both need to blame the conditions we know we do have keep calm and carry on. X

Today the left side of my face lip and inside my mouth is numb. My eye seems involved too. I am so upset Dr's don't give me a diagnosis. I feel bad for all of you on this website.  I am very glad you post your symptoms this way it is teaching me TY all

Hi Christine,

?I am sorry you have these issues!  Yes, I have the pins and needles feelings in both of my lower legs and feet.  My Neuro doc tested me, and he called mine peripheral neuropathy, and is due to my SS.  As a lot of us on here, I don't just have the dry eye and mouth either, I have so many other issues with internal organs, lupus, RA and the list just seems to keep going on.  I unfortunately can not take the plaquenil, as it caused damage to my eyes in the first 3 months, which is too bad, as it just started to help some.  Anyway, they put me on methotrexate, didn't do much, upped the dose, so had to go to injections, made me very sick, took it foe a good year, had to stop. They put me on Imuran a year ago, along with my prednisone, and injections of kenalog shots when needed, and feel better. But those pins and needles still make me crazy, still have to walk with my cane, can't always feel where my feet are. This SS is not for the faint of heart that's for sure!!  I wish you luck dear!!  Please keep us posted, we are all here for you!!  There are lots of well informed people as well as nurses and medical staff on here!!