Hi all, I hope you're all hanging on in there.
I am newly diagnose and wanted to ask if anyone has pins and needles, especially in the head.
I am having these weird sensations all over my body, difficulty walking with balance issues, plus vision problems too.
Any advice greatly appreciated.
Thank you
Take care kind regards
Jayne🤗🤗
I have a similar combination.I have lots of head sensations of right side of head / scalp, and then maybe at same time or different time numbness or clumsiness affecting left side. Also issues voiding.
When I'm tired I can an internal tremble feeling.
Sometimes eyes photophobic or just don't feel right.
Other times everything completely fine.
I'm wondering if it either direct inflamation of nerve fibres, or if it is something to do with anti-phospholids altering blood supply to nerve fibres.
Reporting it to different doctors: Had headache clinic referral suggesting post-traumatic migraine, also vasculitis investigated, and sinusitis in relation to head symptoms.
Looking forward to hearing responses from others.
Good post BubbaTetley
Hi here's a good one for you ☺️ we have neurologist attached to lupus clinic. I saw him because I complained of nerve pain over half of my head .he said what's nerve pain ? So I said well if You don't know and left it at that .I refused to see him again and the rheumatologist put it down to APS.
This is an interesting post that mentions small fibre neurpathy and also vit B12 deficiency. May explain why I crave marmite sandwiches which has the B12..
I have this but I don’t have any answers. I’m not even sure I remembered to mention it to my rheumatologist! I wondered if it was focal seizures at first but then I read other people with CTDs experienced it so I decided it was that… should probably get it checked though. I have Lupus and Scleroderma.
we’re all guilty of not mentioning certain problems, it’s so easy to forget 😀 mine got to the point where I was waking at night with a feeling of spiders crawling over me! That was enough to email the consultant where he ordered an MRI to be done.
I wake up with weird sensation which for year and half, I have been calling 'flesh burn' not knowing what it was.
This was with me when I woke and often I eventually got up but then it went.
I then got another type that persisted during the day, after a bad reaction to Gadolinium used in an MRI scan.
Now I get a variation, that is more tingly and only covers my lower legs and sometimes, wrists that goes if I turn over in bed. It is wonderful I can make this type go.
Do you see any patterns with yours?
no, theres no actual pattern anymore which is good. A lot of the symptoms have been ‘damped ‘ down by taking a small dose of pregabalin. When I do get sensations of head spinning/ feeling numb and tingling in arms and legs. I now know that a nerve is squashed/compressed and I have to ‘reposition’ my neck or spine. Fortunately it doesn’t happen very often anymore while sleeping. 😊
hi bubbatetley, yes I have/ had all these sensations and lose of balance, all to do with neuropathy and nerves being compressed. Pregabalin and physio have helped a great deal. As you also have hypothyroidism that could be part of your cause for these sensations ? I presume you’ve mentioned it to the consultant?
The other day I tripped over something on the kitchen floor and bashed my toes on my left foot that for years have been generally numb. I did not feel much.However, 10 minutes later my whole left leg went numb and I felt spaced out, and eyes not focusing. Lots of my body had gone tingly a bit like migraine.
The odd sensations passed within a few minutes but I was left with the internal tremble feeling, which I guess is motor rather than sensory nerves being affected.
When I mention these things doctors say part of the picture of autoimmune disease.
This post is helping so much.
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