PPMS?

For the last 4 years (I'm 50 this year) I've had a range of neuro symptoms, starting off with migraine and vertigo, tingling limbs etc. steadily increasing in range and severity until now I have cramps, fasiculations, stiffness, muscle spasms, numbness, parasthesias, weakness - mostly legs but also arms, hands; bouts of overwhelming fatigue and a lot of pain (muscle and joint pain). The migraine and vertigo have abated, although I get occasional neuralgic pain around left eye (VEP negative).

I've had brain and c-spine MRI (without enhancement); it showed arthritis in neck and my neuro said specky scans were normal for my age so it was clear. LP negative for O-bands (a year ago). I had upturning or absent plantar reflex, which neuro finally decided were really downturning after all (I don't understand that, but soles of my feet were often numb anyway).

My doctors are at a loss and have no suggestions, but I have lost my job due to increasing disability and things arn't improving with time, so I feel unwilling to accept this situation and need advice on what I can do next. I've just pressed my GP to refer me to an MS and peripheral nerve disease specialist, and will probably have to wait 3 months for appointment. Are there other tests I should be asking for, and is it very unusual for tests I've had to come back normal in someone with these symptoms (so, am I from another planet?)? Am I right to insist on seeing specialist and have I chosen right areas?

SM

[CCF-Neuro-M.D.-PW]

I cannot give you a clinical diagnosis unfortunately with the information you provide. There are a broad range of possible diagnoses from hypothrooidism to a peripheral nerve or muscle disease. While PPMS is a possibility, without atrophy or lesions more suggestive of demyelinating disease, thsi diagnosis is questionable.
An EMG and nerve conduction studies will be useful to investiage a peripheral nerve or muscle problem
Some blood tests to exclude conditions such as an inflmmatory vasculitis or myopathy (for example ESR, CK) should be done, and maybe testing for, if suspected, stiff person syndrome

Hopefully you neurologist will be able to diagnose and treat your problem
Good luck

[sillymountain]

Thank you for your reply...I was feeling a bit desperate after having waited a year for a follow up appointment with my original neuro - then it was waiting for me when I got home! I've had blood tests for just about everything, but no conduction or EMG tests, only the VEP. I'm just finding it very hard to accept that all these tests can keep coming back negative when I have so many symptoms. If I could hang a name on what's wrong with me, it would make it easier to deal with the consequences (lost job, etc). Thanks again, SM

[aussie99]

dear sillymountain,
Keep your chin up best you can so many of us are in the same boat.I am 32 and one day I woke up, and the nightmare began. Sometime scrolling through the endless mountain of despair I realize that science has failed the lot of us. I recommend that you get a support group around you, good pain relief, and when you have all this, continue your quest for answers.