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I cant get any answers.

Hi im new on here so firstly hello everybody.

About 7 years ago i went to the docs because I kept falling over for no reason. (Not tripping just falling). I was doing Dance at the time in Uni so probably noticed it more. I also had, and still have, pins and needles in my hands which lasts for about a week each time and I cant use them properly when this happens. I had a few other things such as blurred vision in one eye that wouldnt go away for a day (Optic Neuritis they called it) and it sometimes feels like i had no legs.

Anyway to cut a long story short I had MRI scan which had 3 leisions and Evoked Potential Tests which all were “Equivocal” they put in the letter. About a year later I had another MRI and it was the same. They told me that they cant tell me yes or no and left me at that. This was 6 years ago!

They also said if i get anymore symptoms to go back so about 2 years later i went back with new symptoms muscle spasms in and around my stomach and ribs which took 3 docs to actually say it was muscle spasms and not just IBS. (I have been looking and it sounds like the “MS Hug” but not sure what that is exactly). When it happens i cant breathe for a few seconds and sometimes feels as if im winded. They gave me IBS tablets and they did nothing. The last one gave me Baclofen which is like a miracle for the spasms. I also has memory problems and stuttering which they put down to Anxiety. They just fobbed me off and told me it was nothing to worry about.

Im now getting fed up as i seem to be getting one or 2 other things such as burning sensations. Does anyone know if this sounds like MS or am I just making all this up?

Thankyou and sorry for the rant. Take care all xxx

Hi, I cant see why they told you it is nothing to worry about…of course it is…something is wrong!

Is yur GP good? I think you should go see him/her and tell them what`s been done and said.

I hope you get somewhere hun. It isnt right the way youve been fobbed off`.

luv Poll

ps welcome to the site!

Hi, i agree with Poll go see your GP and tell him/her you want answers its not fair to fob you off like they have, i know what your going through as ive just been given a prob Dx PPMS but they wont confirm until ive had another MRI and evoked test, but please dont let this lye insist on answers, wishing all the best and welcome to the forum there a great lot in here xx

Hi thankyou both for your responses they helped alot. I thought i might of been going mad so its nice to see theres other people here who know what i mean.

About 3 weeks ago I had an episode where i could hardly walk and my legs felt heavy. I went to the docs and they sent me back to the neurologist who i saw on Thursday and I have now been diagnosed with MS not sure which type yet but got to go in another 6 weeks to see him. Might get more answers then

Again thankyou and take care all xx

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Since it comes and goes a Dx of RRMS seems probable. What you need to think about for the next few weeks is this:

If you have had two (or more) relapses within the last two years, you qualify for a DMD drug.
You may or may not want to be injecting yourself every day/week/etc (some do, some don’t).
Those with a very mild form of MS can get by without a DMD for 10 years or more …
Those with a very aggressive form of MS wish they had started on a DMD much earlier (that includes me).

So first you need to count up how many clear relapses you have had.
If you qualify, you have to decide if you want a DMD.
If you do, you need to think about which one (check out the MS Decisions web-site, and this web-site under treatments and therapies).
Now, when you see the neuro, you need to be able to recount those relapses.
Then, you may be passed to the MS Nurse to talk about DMDs, you will have a decision clear in your mind.

It will be so much easier if you have planned ahead.

Geoff

HYA all, Im new to this forum.

I was diagnosed with MS 12 yr ago. I also have had DYSTONIA from age 3yrs tho it wasn’t named then. My ‘southpaw’ was evident as was my unusual gait. There is also a diagnosis of CP somewhere along the line … apparently… ( bean playin a werd gaym to try keop mentillly agile) lol :wink:

I have had 2 further stays in hospital since my ‘mayb’ diagnosis of MS. I have recently (after another stay in hospital) was diagnosed with LABRYNTHITUS!! My medical file must be bulging?

I remembered the first symptoms were a very fast spinning sensation causing violent nausea which after a few weeks (I think the NHS was on an economy drive ) lost a stone in weight as could not eat.I had my first stay in hospital. Came home ( or should I say went home coz I don’t live there anymore lol) I went home in a wheelchair for a short while, then after a lot of work I ‘made’ myself improve to the stage I could walk alone again

With no other attacks for 10yrs I thought I was fine. Then after a very stressful period ( 10 deaths in those 10 yrs then…my first born son died!)

Apart from the obvious difficulties, I then lived as I had been. I developed no other symptoms until last year. After another stressful period I moved house too, I was brought down with another bout of spinning with nausea then left with a more disabled right hand side of my body.I can no longer walk without help. But… I keep smiling. I am tired of hospitals but recently I was having difficulty reading & after talking to my GP had, a contact lens fitted.

Now then, The next problem came when after a few weeks I had to remove the contact as I had a ‘ache’ on the eyeball! lol oh joy. not daring to google but I did… & noticed after a quick peruse, Eyeball ache could be something else neurological. NMO!! OMG lol

On a hopeful & brighter note NMO has an easy diagnosis…blood test!! YIPPEE. At least I would know immediately if it is.

So…I could still be smiling as MS it may not be but the symptoms are very similar. As we fellow sufferers will understand, I cannot still for long enough to be able to retain info so I need to rest now ( bak t my wword gaym. lol)

Speak soon

P.S any 1 hav anything similar? love t hear from ya.