krisp 28/05/15
Last reply 3 years ago
PPMS anyone

Hi sorry to be a nuisance
Was wondering if anyone with Ppms can tell me if they’ve had sensory sumptoms like a toe go numb or fingers go numb that went away? Or would that point to remitting?
I’ve had so many problems that have stayed or got worse or are now intermittent and I can’t get any clue on what’s going on

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Anonymous
3 years ago

Been numb down the RH side that went away apart from the hand, and that varies in numbness and location, and can go to the elbow.
I just ignore it, and it’s no big deal, obsess about it and it will be more apparent, I trained myself to ignore it


cazzzzzy
3 years ago

Hi @krisp ! … I am PPMS but have sensory symptoms that come and go – I often wonder when this all started years ago whether these were relapses so this is the sixty four thousand question for me! 🙂 … Unfortunately though my mobility problems aren’t going anywhere!

xxx


cazzzzzy
3 years ago

By the way you are in no way a nuisance so no apologies!

xxx


krisp
3 years ago

Hi thanks guys and thanks Cazzy I really appreciate it
I was hoping it was gonna be RRMS but the nature of some of the issue has me wondering if it’s ppms, the odd thing Is so far I’ve had all clear MRIs and a clear lumbar puncture, other than Lhermittes they can’t find anything on neuro exam either.
I’m wondering if it’s early as only had issues from Decmeber but had so many!


brokendancer
3 years ago

Hi Kris,
I was wondering only last night how you were doing 🙂
When I thought I had PPMS, the symptoms still didn’t appear that fast. The foot drop that was what prompted the diagnosis wasn’t even there all the time, I only had it a few times and it might only last a few hours.
It wasn’t til I had a bad fall about 5 months before diagnosis that the ball started rolling for me. I went to see an Osteopath about the fall and she wrote to my GP stating I needed an MRI. Still sent for MRI via the GP referring me to the spinal unit.
It was only the last few weeks before diagnosis that the fear snuck in, I had to stop my classes because I couldn’t stand after a bath – Uthoff’s anyone?? Of course, hindsight tells me I had it for a long time.
What’s your next move/appointment?
Sonia x


krisp
3 years ago

Hi thanks Sonia
I’m ok had a full spinr mri and limbar puncture and both were clean so it’s all very odd now
I’ve got a nerve test soon and then another neuro appt, I worry its early PPMS so nothing showing yet but can’t get anyone to listen lol
But then barring Lhermittes there’s been normal neuro exams, normal mri and normal lumbar puncture so what can they do
How you getting on now? Any news on the cells?


brokendancer
3 years ago

Hi,
the trial is off for me now so trying to get referred back locally and start Tecfidera – blogged it http://brokendancer.over-blog.com/2015/05/medical-stuff-update.html#ob oh, and contacted my MS nurse last week and started a 5 day course of steroids yesterday. I think the fact I have 2 active lesions was probably an indicator that I wasn’t imagining a couple of weird things – so when the tightness in my left hand travelled to mid-bicep I caved in.
Good luck with the nerve test.
Did you have contrast when you had your MRIs?
Sonia x

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