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1168938 tn?1327154232


I have many issues and asked rheumatologist if I could have fibromyalgia, she said I don't fit criteria what do you think?
Joint issues, muscles pains, sleepless nights, depression, cognitive issues, brain fog, always tired, IBS, Gerd, cramps in hands, hips and feet, temperature varies from boiling hot to cold, weakness in muscles and twitching, difficulty walking I'm unsteady on my feet and that's just a few of my symptoms.
I also have reflex/startle myoclonus and spinal myoclonus which seems to be the thing the doctors talk about and they tend to ignore my other symptoms. I actually asked if I had seen rheumy and I didn't have myoclonus what would she think I had she was non commital and has discharged me and booked me in for rehabilitation for my muscle issues, bad back and myoclonus.
Any input welcome.
7 Responses
956292 tn?1334054869
Hi there,

Oh my goodness, did she happen to say what it "DID" fit in? Do you have a neuro already????? Have you been tested for Lupus?? Forgive me if these have been answered....

Big Hugs to you...
1168938 tn?1327154232
Hi Jibs

I've had 2 neuro's over the last 4 years but they concentrated on my myoclonic jerks, when I mentioned all pains etc they just said your muscles are bound to hurt because of the jerking, my jerks are in my torso and spine, that does not explain my muscle and joint pains in my arms, wrists and hands.
I think because the myoclonus is visible they concentrate on that and can't see passed it.
I've had lumbar puncture, MRI brain and spine, CT scan, bloods for anti gadantibodies, Lyme disease etc I am assuming Lupus would have shown up in the tests.
Rheumatologist didn't say anything useful, I was upset during consult and all she offered was rehab for muscles and asked if I had had counselling re: myoclonus.
I've been discharged from neuro, he told me 'no cause, no cure' for myoclonus go home and live with it...which made me really upset, basically he gave up on me.
The rehab is starting next month, but they won't be doing any tests to find out cause of my issues so at the moment I am banging my head on a brick wall with no help other than maybe pain meds, botox injections and physio. It won't help because I've had physio and one day my jerks were really bad and the physio said I can't help you, as long as you are doing the jerks it is undoing any work I do.... Aaaargh!
Still smiling though, not going to let it get me down LOL.

Hope you are doing okay.
956292 tn?1334054869
Hey there

Big hugs to you...I am sorry...Docs can be so ugggsss.

I love your spirit...I hope the rehab will help.


1168938 tn?1327154232

Thanks for the hugs and yes doctors are ugggsss!!!

Have a good weekend.
551343 tn?1506830518
I have you checked out M.E./CFS MYCLONSUS are common in this.

I found this guys journey with M.E. you might like to read it, it took him years to get a diagnosis of M.E.

ALSO my friend has fibromyalgia and she has all your symptoms lol. Mind you though she has tender points, do you have tender points if not it cant be FMS.

Check out M.E. though because a lot of your symptoms match. (and MS actually).

551343 tn?1506830518

1168938 tn?1327154232
Hi Maria
I've just left you a message re: your MRI and then found you'd sent me a message, how nice is that. Thank you so much for giving me the link, I've not been tested for tender points but if it helps everything hurts lol. I'll go check the link now and have a read, I knew you can have myoclonus with MS but not with Fibro so that is something new and helpful to know.
Wishing you well for tomorrow.
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