Can anyone help with my query please! "warning long message "
Hi can anyone help please,It all started at the age of 22yrs when I was experiencing muscle pain and heaviness after lifting objects at work I am now 46 and have the same problems with both arm and both legs,I also experience quite sever shin pain which is touch ,vibration sedative some days my shins are so painful I cannot even bear my clothes touch my shins , burred vision and slurred speech ( my GP has witnessed this on a few occasions the first time was over the phone ,when he actually thought I was drunk !)I recently had some tests done at my local hospital as there was a possibility that symptoms I was experiencing amongst other things the main problem are with my muscles and sleep problems which could of meant I had MS, while MS was thankfully ruled out , there was a possibility that I may be suffering from Myasthenia Gravis appeared I was given the Tenison Test (a liquid was injected into my hand while I had to do certain eye movements )and blood tests were done .I later learned that the Tenison had tested positive , and the blood tests had tested borderline positive and I was started on medication which I was informed the dosage would be increased gradually. Four days later I was sent for a electrode muscle tests which tested negative and the medication was stopped and I was told that the two tests which had tested possitive had "Falsly Tested Possitive" a repeat blood test was done afterwards but when I went back for the results I was told it had tested negative for "Multiple Sclorisis" ? I am so confused .I have been informed that I am suffering from Fibromyalgia( although I was later referred to a Fibromyalgia specialist who has said that he believes I have another condition ... and not Fibromyalgia 'but he did not say which condition. I was referred to another specialist who said I "was "suffering from Fibromyalgia ???),I have been diagnosed from other conditions Arthritis Osteoporosis , Haemochromatosis Scoliosis ,Sciatica and prolapsed discs .The problem I have is that although I am sleeping at night ,I can wake up feeling refreshed but without warning I fall off to sleep ..I can have a cup of hot tea in my hand or smoking then suddenly I'm asleep or I can be sitting holding a conversation and drop off to sleep ( which is very embarrassing when we have visitors ) at first it was only the odd day here and there and normally weekly, but recently I slept for three full nights and three full days ,through the daytime sleep I will wake briefly and feel confidently wide awake' yet after a couple of minutes I will be back off to sleep, I had workmen in my home recently and my wife had to pop out for a very short time to the corner shop I felt wide awake yet I fell off to sleep again' my wife woke me when she had returned the workmen had gone ! when the problem began we thought if I could occupy my mind would it help........but I can fall asleep while using this computor , or while watching a film I am really looking forward to watch ....is this Fibromyalgia ?, I can understand how my wife must feel 'she has to lock me in my home if she needs to go anywhere because I would leave doors open unaware I would be going to fall asleep.If I speak for a certain amount of time I begin to have problems with my throat muscles ..the same problem effects me when trying to eat I can at times choke on food ,I have came to the conclusion that I can only have small snacks eating a sandwich is a problem at times. WHAT I NEED TO KNOW IS ..HAS ANYONE ELSE BEEN DIAGNOSED WITH MYASTHINIA GRAVIS ? I HAVE READ THAT THERE ARE SOME PEOPLE WHO HAVE BEEN DIAGNOSED WITH MYASTHINIA GRAVIS BY USING ONLY ONE OF THE TESTS.OR IS IT FIBROMYALGIA , I HAVE READ OTHER LETTERS ON HEALTH SITES BUT HAVE NOT HEARD OF OTHER FIBROMYALGIA SUFFERS SLEEPING FOR FULL DAYS AFTER A GOOD NIGHT SLEEP
I NEED TO KNOW AS I HAVE CHILDREN AND THEY NEED TO KNOW PLEASE!
hi, sorry you are having such a tough time. it's scary to be so sleepy- i don't have the gravis disease, have been told i have fibromyalgia but moreover suffer from ehlers danlos syndrome, tethered cord and cranio-cervical instabilty with POTS. The instability in the cervical portion of the neck causes me to have the symptoms you are talking about, although I don't sleep all day- I often become very drugged like and can't keep my eyes open - choke on food too, to the point of having a vomiting problem on and off- these are symptoms of compression of the brainstem for me. I just thought I'd share. It sounds like you are still in the middle of trying to find the right diagnosis for your problems and I hope you find it soon. Knowledge does empower us- so I wish you the best.
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I'm certainly not an expert but the sleep part doesn't really sound like typical FM. Sleep is a big problem in FM - as, of course, is pain, fatigue, poor concentration, hypersensitivities to odors, chemicals, etc. But just falling asleep and staying asleep does not really ring a bell to me. Doctors must have talked about narcolepsy with regards the sleep - but they must have discarded it as well (?).
You have alot of strong neurological symptoms - I think you should just keep searching. Unfortunately some conditions kind of blend into each other making it difficult to tell whats going
If theres a major university near you perhaps you could approach a neurologist there. Academic neurologists have more time to check out these kind of in-between conditions and probably more curiosity as well.
Good luck.
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