Hi all Counting down to first neuro appt in 2 or so weeks which has now been changed to phone from actual face to face appt- after cancelling my proposed holiday to go to… Anyhoo going to/ currently reviewing symptom diary though to be honest prob enough red flags imho to be getting on with anyway. Like most looking back it can put other things into context. In diary i have note of unexplained muscle pain over year (amongst other things). Have been to GP on and off for years. They have looked at rheumatological reasons and earlier this year checked muscle enzymes etc. I thought maybe it was Fibromyalgia but no other symptoms of this. Main issue is stiffness and some pain- as if i had been exercising the day before. Mainly first thing and end of night when sitting on sofa but doesn’t inhibit walking or driving. Not sure re strength issues but not noticed any weakness. No spasms and can manage pain without analgesics. Get it in my arms too at times. Its been ok for months then back in last few days but can’t see triggers. Historically thought posture/stress/biomechanical This gap and return has now made me reflect on whether its significant MS wise I know its common but sympton description suggestive much mor disabling/ significant/ without doubt. So looking yet again for the experience of others. Keen not to put everything down to ’ posdible’ diagnosis but obviously want to prepare for appt
Please update us with what happens. Some people disappear off the forums but I hope you will let us know. It’s just I’ve been experiencing muscle pain/tightness without any obvious cause and I’m worried too…
Will do. Aware that things happen to your body that can happen out with MS and be unrelated. When its under query ( even in your own head) its hard not to be hyper vigilant and start attributing everything to it. Eg despite years of pain in abdomen that id be inclined and have been inclined to think is gastrointestinal…now thinking te MS. Hug. Then of course you have descriptors of common Ms symptoms…only to be told everyone’s MS is different . Eg i dont fit description of trigeminal neuralgia…and yer others on the forum have similar description to me Appt next week…so just start of the journey really
How was your apppointment EML? Hope it went well xx
Neuro not of view its likely MS (are they ever…) but is going to order MRI. I had posted about it, notably fact that issues 4 years ago which were put down by then neuro as atypical migraine is now likely (definitely ) epilepsy. I had thought this at times and though its had miniimal impact on me( 2x episodes in last year, 4 years unmedicated and no progression or change ) its still a shock. So i wait for the rest of it
Thought neuro was bit cavalier. He specialises in epilepsy and i only mentioned the issues 4 years ago as part of wider neuro issues so it figures if i hadnt said, he wouldnt have diagnosed so its kind of arbitrary but suppose he cant unknow now what he knows. I did query if he was going to just say that on phone and then … and now worried appt becomes about this and not query anything else. Of course they dont account for symptoms that drove me to GP.
He has suggested medication, with caveat that he can see why i wouldnt take them for infrequent. low impact of seizures in relation to heinous side effects of AEDs . So has effectively ‘left’ it up to me. I will wait for MRI as now paranoid that the two are related . Ony reassurance is if 4 years, would have expected to see something more blatant
So at the least i have a new condition, at the most i have 2, on top of the one i have. Guiness Book of Records awaits surely!
Glad you’ve got the mri coming up, at least that should put your mind at rest about ms if it is clear. Sorry about the epilepsy but sounds like your body has it largely under control - can see why you wouldn’t be too keen on the meds.
Must’ve missed your last post so sorry for getting you to repeat yourself. I had a little break from being on here, not really intentionally, just been so busy with sorting appointments, DVLA, work etc etc since diagnosis I haven’t felt up to reading on here too. I haven’t even read the newly diagnosed booklet thing they gave me. Been a bad patient! Definitely so much calmer and happier since knowing.
It’s quite a list of conditions you have going there…I think at the very least you have material for an autobiography out of this