I got numerous painful areas (like burning pain) on my scalp and neck 4 months ago. Also developed migraine headache and pretty well a constant headache every day since. Ended up almost bed ridden for 6 weeks with fatigue, extreme tiredness and arthralgias in most joints.
Biopsy of scalp area showed no fibrosis, infection etc and dermatologist said it was nerve related and Hyperesthesia. The patches are unremarkable to look at, but hurt intensely. As i have a lot of skin plaque psoriasis areas elsewhere, she feels that may be the cause. I can also feel lines in my forehead and temple that are sore to push, perhaps they are nerves as these tend to follow arteries etc.
All autoimmune blood test have come back negative. Head CT and ultrasound clear. Chest X ray clear.
Also get a bad cramp in my left calf, usually while lying down. The odd pins and needles and burning feet sometimes.
Blood pressure has gone crazy very high and then days later on the low limit
I want to see a Neurologist as well, had a head/brain MRI Nov 2023 which appeared to be clear.
With MS what is the process/tests to diagnose this disease and is there varying forms of it, eg like a mild version without all the major symptoms ?
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Oztrax
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I don't have medical training but have had MS since 1980. Your symptoms do not sound like MS. Pins and needles sensations might be but there would be other symptoms that you don't mention. Neurologists think of the MRI as a fairly good diagnostic tool for MS. It can be wrong but yours was clear a year ago, and your symptoms just don't seem like MS to me. I hope you'll find some answers that will help, though. The very high blood pressure sounds like something that should be investigated soon.
Thanks AGATE, i agree it appears to be inflamed nerves just on my scalp and neck , so its a Scalp dysesthesia. Whilst the burning symptom is quite painful at times, (like the acid under the skin , some describe) main issues are a constant headache , worse when the burning areas increase. But feel like a fever and fatigue, tiredness makes me bed bound for days at a a time, and the last episode was 6 weeks. enough to have to stop work. Something like Guillain-Barre Syndrome doesnt fit as i dont have any muscle weakness etc. MS is CNS based and my scans exclude that. Am happy with my Dermatologist, she wants to work towards a Biologic immuno suppress medication like TALTZ or COSENTYX, but I still think I should see a neurologist which are pretty scarce where I live. The crazy blood pressure is an issue, its like the regulation doesnt work well any more, am waiting on a hospital cardio appointment, but GBS does involve blood pressure issues apparently.
Occipital Neuralgia fits my symptoms, I am curious how do nerves become inflamed ? My scalp, temple and neck have many of these sore areas. MS is a myelin sheath issue
my inflamed areas started with the occipital areas at base of skull 4 months ago, then sides and top of my scalp, temple front and sides. Neck where carotid artery runs. Left knee and end of my ribs. But the scalp areas seem to be the cause of the migraine and constant headaches. Also severe fatigue and feeling very sick. These areas do subside somewhat after a number of weeks but then more areas start up and the cycle continues. Had 2 lots of Prednisone 25 mg, headaches go away after 1 dose and inflamed areas calm down only to return after finishing the 5 day course. I am happy with my Dermatologist who worked out this was inflamed nerves, she said its an autoimmune cause and when i start a new immuno DMARD i expect it to improve. Am already on Leflunemide for PsA and Duloxetine which is said to help with the pain. Scalp biopsy ruled out fibrosis, infection and other causes. I guess a Neurologist or similar could do a small removal of some nerve to examine in the lab, but would this really find a root cause ? What medications do you MS people take for your condition ?
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