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My husband is 34 and has been unwell for almost 2 years he is currently under the care of a Neurologist but appointments and tests are taking months and months.
His symptoms began as aching in his legs and arms, some days it was both some days one or the other, both had periods of extreme fatigue and weakness he would be writing and his arm would just ache and his hand would stop writing or climbing stairs his leg (either one of them) would feel complete loss of power out of the blue he would have to stop, wait and concentrate to keep going.
He also experiences random patches of hyper sensitive skin the size of a tennis ball these could be anywhere on his body and feel like sunburn if you touch them but there is nothing like a rash or anything there, these have become slightly less frequent than they were originally.
However , over the next few months his symptoms generally worsened and he has good and bad days but every day consists of some extent of muscle aches and weakness he describes it as a really deep ache almost in the bones.
On a bad day now its a struggle to climb stairs or lift our children up.
He doesnt feel mentally tired as such - as in he doesnt feel like he needs to sleep constantly but his body and muscles seem to get fatigued extremely quickly. First thing in the morning he finds it particularly hard as wakes up very stiff sore and achy like hes done a heavy gym workout in his sleep.
More recently, he is worse and has begun to experience twitches and muscles jerks. These can vary from a tremmer type twitch of his thumb and forefinger or toes, or an electric shock sensation starting in a hand or foot and travelling up across the body making his whole body jerk/jump.
These began at night time originally but can now happen at any point during the day and are significantly more severe/frequent if he does too much physically. They occure
mostly when he is sat down at rest.
At the moment he finds busy social situations very overwhelming , doesnt suffer from brain fog as such but definately finds multi tasking a lot more stressful and gets stressed in general a lot easier, he used to be so
laid back. Im not sure if this is a result of feeling so unwell for so long or part of whatever the problem is.
Test wise so far he has had a brain MRI nerve conduction studies, numerous specialised blood tests (inc lyme disease) EEG and muscle biopsy all of which have provided no answers.
The only slight descrepancies are consistently mildly elevated CK liver enzyme levels and an elevated red blood cell count.
He is due to have a sleep EEG, lumbar puncture and PET CT scan soon I just wondered if anyone out there has similar symptoms and has found a diagnosis.
We have 2 very young sons we have adjusted life to get on as best we can but are just desperate for a diagnosis to then find what kind of treatments might help him feel better.
If youve made it this far thankyou very
much for reading!
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