diagnosis

New diagnosis and before diagnosis
1

hi,

just wondering if it’s the same for everyone?

i’ve had an mri of my neck which showed an area of imflamation/activity , then an mri of my head that showed a couple of lesions.I was then told probably ms and that they would to a lumbar puncture to confirm.after a long wait for those results, they came back showing o bands. still unconfirmed, i now have to wait for another episode.This episode hasn’t gone. some days i feel unbelievably tired. Somethings have got better, pins and needles in legs now just a tingle, though for the last few days i can’t seem to walk properly. my foot and ankle hurts though i haven’t done anything.Sometimes before I’ve struggled with steps and i stumble often. can no longer balance to put on socks.my hands feel strange and its like i can’t remember how to use scissors and tie shoe laces. i feel stupid.

could i go on for ever like this but still undiagnosed?

has any one else had something that felt like a trigger?

this started about 2 weeks after having a rabies jab but the drs don’t think its GBS.

any thing i ask the dr, just gets answered with they don’t know

lynn

2

Hi, well we have amongst us a lady called Rizzo (Karen). Shes great at untangling medispeak and results for us. Daresay shell see your post and jump in.

I`ll give her a nudge for you.

Just to plop my two pennarth in…sounds like there`s a lot of MS like stuff going on with you.

i am still being tossed from PPMS to HSP and all the way back again.

luv POllx

3

Hi there,

Yes, I’m afraid it’s normal to have to wait for a second episode, OR evidence of continued activity from a second MRI at least 6 months later, before an MS diagnosis can be confirmed.

You see, some people only ever have one attack, and that does not satisfy the “multiple” aspect of MS, which requires that it must be more than a one-off.

Hence the long drawn-out wait, for a lot of people. A second attack can follow quickly, or take years, or never happen at all.

Some people do link the onset of symptoms to a “triggering event” - often a period of physical or emotional stress. So being ill, having a (serious) accident, a marital crisis, or a bereavement are all things people sometimes associate with the start of their problems.

BUT, MS symptoms are aggravated by stress and physical illness anyway, so it could be that the person unknowingly had MS already, but the “stressful” event made symptoms more noticeable.

If, for the sake of argument, you do have MS, and it was there before the rabies jab, even a mild reaction to the jab (slight fever) might make symptoms flare-up to the point of becoming noticeable, when they hadn’t been before.

Anything that raises body temperature - a fever, a hot bath, or even just exercise, sometimes sparks a temporary increase in symptoms.

Hope this helps,

Tina

4

Hi Tina, that was a very well explained reply. i`m sure it has helped Tonka.(and me too!)

luv Pollx

5

Hi Lynn.

As Tina says, you need to have multiple attacks to get a full diagnosis of relapsing remitting MS (the most common type of MS). When someone has had only one attack, the best a neuro can do is say “probable MS” (which is actually a proper diagnosis despite not sounding like one!).

So, could you go on forever like this without a diagnosis of RRMS? In theory, yes, but it is very unlikely. People with probable MS and a positive LP and positive brain and spinal scans are highly likely to have a second attack. It’s impossible to tell when this might happen though (at the moment anyway - there is a new breath test to show this being worked on at the moment believe it or not!!!).

If your walking, hands & balance problems are new, then it sounds like you might be having your second attack already (which is a real bummer given that the last one hasn’t entirely gone :frowning: ). Have you been given an MS nurse? If you have, then please call them and let them know that you have developed new symptoms - your neuro should really be told and the nurse may be able to help. If you haven’t, then please see your GP. He/she can write to the neuro. You can also ask for a referral to a neurophysio - they are really good at working out things that can help balance (and lots of other things).

I hope it all gets better very soon!

Karen x

6

Hi Lynnn, I am in a similar situation to you. my legs both went cold and numb before christmas. I have had a MRI of Spine and told I have transverse myletis (inflammation of spine) in two areas. I am waiting for a MRI of my brain at end of month. My legs are still tingly (more like an internal tremor) but not so numb and coldness has totally gone.

So I am like you, at my neuro appointment all he talked about was MS and so I believe I have had an episode of MS and am waiting for the next ‘episode’ whatever that may be untill they will confirm and full diagnosis. He also said to me I need to have another episode before it will become confirmed even if MRI shows lesions on my brain, he said that will just confirm how likely it is to happen again!!!.

So big black cloud hanging over me…same as you I guess

7

thanks for the replies. where can i find out more about the breath test research? sounds fascinating

lynn

8

If you go to http://multiple-sclerosis-research.blogspot.com/ and search for it, you might come up with something? There are a number of different researchers working on this sort of thing so try other searches like “relapse prediction” or something like that.

The MSRC website might have a news article about it too.

It’s a long way off being ready I think though

Kx