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Probable MS

Have just been back to see my neurologist after having an MRI scan, blood tests and a lumbar puncture. MRI shows numerous scarred and inflammed areas in my brain and spinal chord, lumbar puncture showed signs of MS as did blood tests. Have been told i have probable MS but i need to have another episode before they can be sure. Over the past 2-3 months i have been experiencing tingling sensations and numbness down the right side of my body. Pain in the left side of my face and numbness in my tongue and lips. A feeling of heaviness in my legs and only being able to walk short distances before my legs feel so heavy that i feel as though i am going to collapse. Odd sensations in my legs and feet at night leaving me unable to get to sleep. Extreme fatigue throughout the day and chronic pain in my back which has become worse since my lumbar puncture.

To add to all this i have been off sick from work for 10 months with a shoulder injury which has now been operated on. I am due to return to my job as a school catering manager on Monday and am absloutely dreading it. I dont want to tell my manager about my probable diagnosis until it is confirmed but i honestly dont think i am going to get through the day once i am back to work.

Help!!!

Hello and welcome To be honest, I can’t understand why the Neuro hasn’t given you a diagnosis. Is the Neuro a specialists in MS? Have you been offered any medication to manage your symptoms? How much more proof does he/she need for a diagnosis for goodness sake. I would go by to your gp regarding going back to work…you don’t seem well enough to me and could aggravate your symptoms. Take care xx

Hi Matt,

Sorry to hear you story so far, can’t understand your Neuro and not giving you a proper diagnosis.

Why not contact your nearest MS Society branch, or MS Hotline, They can give you advice and who you can contact for help, if you need to.

They know your area MS Nurse, can supply you with information, and if you are not in a union or tradebody can advise you on your situation and what help is available to you.

Its not worth stressing out, you need to concentrate on you and getting back your life. You have to be strong to fight this. We’ve all been there, and we’re still smiling !!!

Thinking for you. Andy

Hi Matt, there is a McDonald criteria for diagnosing ms. I went through the same with a probable diagnosis til I had a changed MRI . If you google it it should explain the process of diagnosing ms. Look after yourself and don’t go back to work if your not well enough. Lynn

Hi Matt,

You are entitled to get a second opinion as you have concerns, you just need to request this through your GP. Or you could get to know the MS nurse - phone up your neuro’s secretary and ask them for your local MS nurses details. You could arrange an appointment with the MS nurse to discuss all your concerns with them and even ask them about getting a second opinion from an MS specialist neurologist.

When I first contacted my MS nurse (when my diagnosis was possible MS) I got to see her two weeks later when she visited me at home.

Get a second opinion. I had all positive results last September but the neurologist I was under ummed and arrrd saying it was all ‘leaning’ towards ms. I saw a new neuro in January , was put on gabapentin for nerve pain and ordered another MRI. I was formally diagnosed on April 7th. MRI had massive changes and my neuro was exasperated as to why I wasn’t diagnosed earlier and said as such in the letter that I received, a copy of which was sent to my then gp, cos after he made me feel like I was making it all up, I gave him the boot too!! Don’t put up with the crap! At the end of the day it’s your LIFE they’re messing with. X

Under the McDonald Criteria, that someone has already mentioned, you normally need a second verified episode, OR MRI evidence of new disease activity with or without corresponding symptoms, after (I think) a period of at least three months.

I was diagnosed by the latter route - got a probable diagnosis, like you - then six months later, scanned again. The scan showed new activity - even though I hadn’t been aware of any, in terms of how I felt. That got me my confirmed diagnosis.

If there hadn’t been new activity on the second scan, I couldn’t have been diagnosed, and would have had to await what happened.

Put simply, the reason people are not diagnosed following a single episode is it is not yet multiple sclerosis. Some people (the lucky ones!) never have a second episode, so it never becomes “multiple”.

“Probable MS” means it’s more likely there will be a further episode, leading to a confirmed diagnosis, but it’s still not inevitable.

Tina

As far as returning to work goes, having been off sick so long are you not able to ask for a phased return, ie reduced hours and lighter duties, after all even without the probable ms diagnosis after so long off work you would probably need time to adjust rather than just being flung in at the deep end and expected to resume full duties immediately. It would also buy you a little time as well as being able to see how much you can cope with.

Hi, your symptoms sound very similar to mines when I got told probable in January my balance and vision was also off had a MRI 3 days after being in hospital and was told 99% MS still need LP to confirm which I have had in April and had my diagnosis, I never had heavy legs until Monday this week then my left leg was sort of dragging, just incase that happens soon dont be afraid, I really hope u get the diagnosis real soon nothing worse than waiting I know the 3 months of waiting for the LP even though I knew what the results would be, my gp has linked my symptoms (tingling legs) right back to 2006 see if you can find out if yours have been ongoing maybe that will help with diagnosis. It’s completely up to you to tell your employer tell who you feel comfortable with and who will give u support when needed. Sorry for the ramble I hope you get help soon.