Forum

PPMS or something else?

Primary progressive MS
#1

Hi everyone, I’m 30 and being investigated for MS. I had a clear brain and c spine MRI but now I’m having a T spine.

My symptoms are - reduced sensation all over body. Not exactly numb although some areas are. Skin just doesn’t get full sensation anymore.

  • weakness in arms, worse in right and weak right leg however it’s very subtle and my arms are worse (is this typical of ppms? I’ve never heard of anyone’s first symptoms being in their arms)

i was very dizzy and off balance for about a week but that resolved

my symptoms started in November and have gotten worse since. Does this sound like ppms? Or even MS at all? Quite scared and hoping that it’s not MS

#2

Oh and another thing, my legs and arms feel like they’re not connected to my body when I’m in bed. The feeling wakes me up in the night

#3

And also, my thumb on my right hand is extremely stiff. Sorry for the updates, I just have so many symptoms! B12 and vitamin D are fine too xx

#4

I’m still quite new to MS, too… and only have a working dx of PMS… but two things that I have learnt are that:

  1. NOTHING IS NORMAL WITH MS…

  2. YOU MUST EXPLICITLY ASK FOR WHAT YOU NEED… Don’t expect anyone to just give you what you need…

Oh, and 3. There are some very helpful MSers who write on this forum…

Anne

#5

Hi guys thanks for replying. Had a clear brain and C spine MRI a few weeks ago! So now I’m baffled, seeing neuro again on Monday. Everything seems to have gone downhill so fast! Bit embarrassing but I’m even having problems with sex. Lack of sensation and general function, so it’s very painful. This is obviously affecting my partner and I, just hoping I can fix it.

#6

Good luck on Monday

Sonia x

#7

Thanks Sonia! This is all very inconvenient, I’m actually trying for a baby! I hope something can be done!!!

#8

Aw, that’s tough, I hope you’re coping ok with the stress of it all. Let us know how you get on anyway.

MS is so individual to every sufferer, that’s why it’s called a snowflake illness. I’m one of the people who had no idea what to expect on the day I met my neuro, I was confused for sure tho.

Sonia x