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What next?

Last April, I had my first CIS, following my MRI the neurologist said I had a 90% chance of Ms. Almost a year on, my symptoms are still the same. The tight pain which feels like my ribs are being crushed brings tears to my eyes as well as the pain across my collar bone and down my neck, that’s just for starters!!

My results are now in after a month, stating some lesions have got smaller and no new ones, that’s good news. In view of this I do not meet the criteria for Ms, so see you in 6 month’s.

I know I should feel happy, but I feel angry in that you don’t have Ms so just carry on. No help or advice to help with the symptoms I am having. Do I just have to get on with it and hope?

I work full time and the fatigue can be so bad, my employer allowed some adjustments pending the results, now no adjustments as I don’t have ms.

Hugs. I’ve not a clue what’s up with me (& neither do the docs). I’m also getting told to just get on with things. Concentrate on the positive and forget the negative. Hard to do when the negative is shouting at you every day! Work have been horrible. Had letter from doc telling them they needed to make adjustments for me as I was struggling with mobility and fatigue. They refused as I’m not ‘properly disabled’. I’m on a final warning as I’ve had too much sick leave (only 4 days in total, which makes me so angry).

Guess bottom line is, we have to help ourselves best we can, and avoid planning anything too far in the future. My kids want to go wild camping in the summer, but who knows what I’ll be able to manage.

At least we’re not going through this alone.

Paula

Hi foxy, I was in limbo for several years, but I was seen by neuros every 6 months.

I had 4 MRIs, 2 lps, 2 emgs, a vep and lots of blood tests.

This ruled out lots of things but gave no evidence of PPMS, although my clinical presentation was typically so.

I was given a 95%diagnosis of PPMS.

Some years later, this was quoshed in favour of HSP. This is similar to MS, but with different background.

My advice to you, is to keep your appointment and keep asking questions.

Pollx

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Hi,

How frustrating foxygirl, but, the neuro has kept you on their books and not discharged you back to the GP, they may be waiting for symptoms to develop or resolve themselves. You are in limbo, though its great news that the lesions are shrinking.

As you are still under the neuro, you are still being investigated.

I had 3 MRI’s, 1 LP, 1 VEP and a load of blood tests…and 3 long years in limbo. Theres so many other conditions that present the same as ms that they have to be ruled out first.

Took 3 years to get my diagnosis of ms (even though I first saw a neuro in 2008 for blurred vision which is now known that that was the onset of the ms).

@ Mali do you see a neuro??

Nikki

Still to see the neuro in July, but i feel awful. Electric shock pain in my collarbone, fatigue and i have had some dizzy spells today. I am starting to think i am imagining this!!!

I’m afraid it is a waiting game, getting neuro appointments is not easy and normally 3-6 months from referral you get an appointment. Perhaps you can contact your neuro and express your concerns, my neuro prescribed me a course of steroids whilst I was still being investigated, otherwise you go to your GP and maybe they will ask for a quicker referral and/or treat your symptoms in the meantime?

Hi hun, your GP can prescribe you some of the tablets to help you with neuro issues. Have you been tested for Rheumatoid Arthritis, Arthritis, and look up Lymes too.

Electric shocks in the neck/collarbone is common in RA.

No pain is imagination its real. I would lay there in bed thinking why is there a tarantula crawling across my brow lol, not that there was but boy it felt like it.

I used to get electric shock in my hands suddenly and drop things.

The thing is dont give up. Its a case of wait and see what happens, but in the meantime, live a good healthy life, do things dont just wait ok…

If it is MS it will show itself eventually.

AFter 10 years now i have the label its made no difference to me whatsoever, as I have been dealing with it on my own, and hey still here, and i still have my sense of humour lol.

I found that taking a break from forums, and google was the best therapy i had, and starting a hobby i love helped me get through this.

So no your not imagining it, your brain is telling you, there is an issue, it just cant tell you what it is.

See your GP, and ask for help to cope with these symptoms. xxxxxxxxxxx

Hi Nikki

I saw a neuro in November. So far have had one MRI and am waiting on nerve conduction tests. MRI was clear apart from hydromyelia in neck which, after much discussion with colleagues, neuro doesn’t think is responsible for my symptoms. GP uncertain of the severity of the hydromyelia, as it can be benign or completely destroy your spinal cord, and neuro hasn’t given us any details. We’ve decided on benign, as neuro hasn’t attached any urgent action on it.

No return appointment booked with neuro as he said he won’t be in touch until all the tests are done. I got the impression that I may not see him again in person, that he’ll just contact me via letters. Big waiting lists and not enough staff up here.

Paula