Back After Long Absence!

Everyday living
1

Hello All,

I joined as a new member when just starting on the diagnosis path and eventually got my formal RRMS diagnosis in early 2019. Must admit haven’t been active on here for a long while although have kept up with other posts - but to be honest I think I almost needed to back off after my initial ‘bravery’ wobbled…as I was scared to immerse myself in the MS world.

So apologies for just popping back on now…it seems selfish I know…but I just need somewhere that ‘gets it’ to talk to.

I started DMD Plegridy but came off it after a few months due to violent headaches and very very dark thoughts. Was of course due to discuss something else, but then lockdown happened so as for all of us, everything kind of went on hold.

But now I’m getting really scared. I’ve been reporting bits and bobs to MS nurses which have been mmostly intermittent and fairly mild things, but NEW things. Have generally been told that it could be the heat, an infection, etc etc which I appreciate.

But have had Trigeminal Neuralgia since late April. Went onto Carbamazepine which after a while muted it somewhat although I could still feel it there. But now it’s gone crazy - non stop stabbing, electric shocks and burning over the last 2 days, plus over the last few weeks it has spread into roof of mouth, cheekbone, lips and tongue. Rang GP in desperation who prescribed liquid morphine…it doesn’t help with the pain at all unfortunately.

In addition to this had reported to MS nurses in March that was having ear pain, burning throat and difficulty swallowing when mouth empty.(no problem swallowing actual food and drink) This has now become a feeling like someone is actually karate chopping and/or squeezing my windpipe and stabbing me inside one ear, or it itching like crazy! (no ear infection present) But because it comes and goes in severity, I feel it is MS related rather than anything actually physical, if that makes sense?

So surely this is a relapse?? These have crept up over months, probably as far back as January/February, but are now constant and unignorable. And the last few days the fatigue is awful. I wake up after a full night’s sleep (unless I have the TN pain) and feel like I’m wading thro treacle.

But, as nice as the MS nurses are, they just seem to keep stalling me by suggesting weather etc etc.

I’m so sorry to whinge, I really am…but am just scared that by coming off Plegridy and not going straight on to something else, i have allowed the MS to barge back in , and it feels aggressive!!

Has anyone had Trigeminal Neuralgia that is just relentless?? Does anyone have any ideas what might help with this pain? I honestly could chop my head off.

So Carbamazepine = not preventing it, Morphine = not reducing pain at all

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sorry that you are stuck in this horrid cycle of pain.

a new DMD is what you need but it seems that you have gone off the radar.

why not write to your neuro explaining it all.

hope you can get some relief soon.

carole xx

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Hi MM, I remember you from a few years ago. I recently came back after an absence, as I had no diagnosis. I did finally get it in March this year…spinal PPMS.

I was in The Walton Centre hospital in Liverpool. I had the most wonderful neuro…he was interested in why after 22 years, I still had no diagnosis. He cared.

He ran loads of tests for unusual and rare conditions, which cause immobility etc.

I was on a ward for almost a week and met 2 ladies who had operations for TN. They were successful.

Has your neuro suggested surgery to free the nerve causing TM?

Boudsx

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Hi Bouds… as yet my Neuro probably unaware although was reported to MS nurses in early May. BUT I do have a telephone consult coming up at the end of the month with one of the Neuro consultants in our MS centre so will be hitting him with all this! (poor man hahahaha) I’m not sure of the cause of the TM - it could of course be demyelination around that area rather than nerve compression??

Your diagnosis of spinal PPMS is interesting - I had lesions only on my spine as of July 18 and consultants have never mentioned any on brain despite 2 further MRIs. However MS Nurse a year ago said she could see at least 5 on my brain!! I’m glad yours was eventually formalised - not that it changes much but perhaps opens doors re. more support and understanding x

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