At 16 I started having bad joint pain in my wrists- my gp said it may be carpal tunnel so I dismissed it as such. Several years later in my twenties my wrists began to bother me extensively affecting all activities involving my hands and I started to have weakness as well- I explored this with the gp. Had x-rays on my wrists which were normal and saw an orthopedist who also mentioned it may be carpal tunnel. Again, I dismissed it for years just dealing with the pain (it would come and go mostly with the weather).
Just 2 years ago (i'm 36 now) I began to have the pain in my elbows and more throughout my hands with increasing weakness. I started seeing a rheumatologist. He ran a barrage of tests including thyroid, lymes, lupus, all forms of arthritis, ran blood panels- all were negative and indicated I was perfectly healthy. He told me that "some people just have pain".
I went home and figured I'd just deal with it. At that time I noticed that I began having some very mild weakness in my
knees- with no solution I let it go. Last year i began to have severe chronic spasms and stiffness in my neck and dizziness that has been established as "lightheadedness" not vertigo. (ive had a long history of memory problems and severe forgetfulness as well). a few months ago I started having more pain than usual and began to have pain in my knees. I went to my gp who referred me to a neurologist. I had an MRI of the brain which was normal and of my neck (c-spine) and lumbar spine. (little background- I have scoliosis in an S-curve of 45 degrees). I have a herniated disc at my c-5 and a pinched nerve at my L-5.
For the past 2 months I've had an increasing of the pain and it has begun to move all around my limbs- it seems to "jump" from (say) my ankle to my thigh to my elbow- it's strange- the pain is severe enough to make me cry out or wince, but it only lasts for minutes- I've timed 3 minutes on some- 20 minutes on others.
When I go to sleep at night I have pain and muscle stiffness in my legs that makes me so uncomfortable I can't sleep- I find I am moving them all around- I am getting relief from a prescription on neurontin that was prescribed for my neck.
Meanwhile I have seen a rheumatologist who has run more tests (celiac, vitamin d, calcium) and did a full bone scan that was negative (mind-boggling because I had convinced myself that I must have a weird form of arthritis that had damaged my wrists). My wrists are "healthy" but they have so much pain and weakness- not carpal tunnel.
I would love to know what could be going on. I'm not sure anyone knows- the rheumatologist is baffled and the nears think I'm crazy.
Oh, not to mention that both knees have begun to buckle at random times- the left knee buckled one day then when I was convinced it was sciatica- the left knee buckled days later! I'm so confused- yesterday my legs felt heavy like I was "lumbering" them around and the day prior both my feet went numb for a few minutes.
This pain has no burning or tingling- its just straight pain- like I dropped something on my foot or smacked my hand against the wall.
Any ideas or suggestions are welcome!
These last two months I have had
I went to my neurologist yesterday after visiting another variety of doctors and another neurologist who dismissed me.
My neurologist told me it sounded like I have "HNPP" pressure palsy.
I went home and read up on it and it is the first thing that I've read that makes any sense as to my condition. Unfortunately, it seems that I am in the 10% of people with HNPP that have pain and sudden quick progression.
I am getting tested for the gene soon- I suggest if your symptoms sound very similar, you should google it and ask your doctor specifically about it.
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