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new to MS. Weird sensation in head and more.

Hello everyone. Im a newbie. I was diagnosed in March with the Relapsing Remitting type. I went blind in the left eye suddenly in August 2012 and ON was diagnosed but no steroids given for a month. The neuro at the hospital got to hear of my case and suddenly I was on steroids for five days. Not sure if they did anything as I wonder if it was too late anyway the sight has come back 80% over time then last autumn I started to have pins and needles/buzzing down both arms when I put my head forward. First I thought it was just a trapped nerve as I had started doing some different exercise but in January after a stressful visit with my aged mother I went to the gym and went on the running machine. Next thing I knew about it I was in hospital diagnosed with Transient Global Amnesia where you lose all memory of time. Mine lasted about 5 hours but whilst in A+E I mentioned the pins and needles thing and the doc said it was probably Lhermitts and to see a neuro. Did that and after first MRI it was inconclusive, then another MRI showed some ‘activity’ in my neck, then a third MRI with some fluid put in, there it was. My little lesion with long swelling over 5 vertabrae. So then I was told its MS but could be Devics desease but thankfully that came back clear so its ‘only’ Multiple Sclerosis. Never thought I would say those words !

Sorry for rambling but there is something very therapeutic about putting all this down. Im scared and worried about the future and have some questions.

Does LHermitts ever go away?

I have weird sensations in my head. It happens every day and has continued for about a month. I suddenly go deaf in one ear, then the hearing comes back, then I go deaf in the other ear and that comes back and whilst all this is going on I feel like a strange wave sensation going through my brain. Its like my skull is moving then that stops. And thats it until the next time. Anyone had the same?

Judy

Hi Judy,

Welcome Judy, this forum is great for reassurance and positive vibes. Share any worries you may have as someone may have the same experiences or feelings.

I can’t comment on the LHermitts or empathise with your sensations or symptoms, hopefully someone on here can. Have you spoken to an MS nurse? They are supposed to be good ( although I have still not had any contact since diagnosis 2 weeks ago).

Stay positive

Nikki

Hi, thanks for your reply Nikki,

I did see an MS nurse two weeks ago and she was very nice and seemed to want me to talk. I got myself in a sort of state beforehand for some reason and forgot to ask about the head sensations but asked about the LHermitts and she said it varied from person to person and to seek out the forums. So I have. After the initial shock of being diagnosed I scoured the net, then tried to ignore it and make light of it, then really really felt the need to talk to someone else who has it. Family, hubby, all great and understanding thankfully, without pity points if you know what I mean but I dont think you can beat a chat with a fellow bod.

It took a month for my appointment to come through for the MS nurse but now Im in the system and she wants to see me every month with a further MRI, recommended by neuro, in September to see if any more lesions have popped up! Then the ‘big boy’ drugs I think if thats the case.

You will probably hear soon in the next week or so from nursey! I suppose it takes a while to get you logged.

Judy