Not diagnosed yet...

New diagnosis and before diagnosis
1

Hi there,

I have been having a lot of ms like symptoms for 8 months now and am getting very worried. It started with numbness, pins and needles and hot/cold sensations in both my legs and lower back and stomach. The sensations changed regularly and moved about different places in my lower half. This lasted for about 2 months and then just as it stopped I got the same sensations in my arm which lasted about 6 weeks. Straight after this I had pins and needles in my hands and bladder problems on and off.

My left leg then went completely numb and I couldn’t feel a thing for about a month. I got steroids and vitamin b from the neurologist but it didn’t seem to help. It then changed to a stiffness from my knee to my foot. I was getting really bad spasms in my foot and could hardly bend my foot or knee for about 1 month. I had an mri which showed a few lesions but I haven’t been diagnosed yet. The neurologist said he thinks i have a 50/50 chance of having ms as I looked so well and was functioning fine but this was before my leg got stiff and I found it hard to walk. I also had buzzing feelings and felt like I was shaking on the inside? And a few times I find my arm or hand trembling and sometimes wake up with my hand shaking

Does anyone know if this is one relapse or does it count as multiple relapses? I cant find any information on how long a relapse lasts. Is 8 months not a long time to have these symptoms without any breaks in between? Also does anyone know if you definitely need a lumbar puncture before you can be diagnosed?

Thanks

2

Hi,

There needs to be at least a clear month (it’s either 28 days or 30 - I can never remember which, so let’s just say a month) between the end of one relapse and the start of another, otherwise it’s counted as the same one just rumbling on. It’s not impossible for a relapse to last several months. I’ve not had many, but for me they tend to be rare but long.

Apparently the average is about five or six weeks, but they can be much longer OR shorter (the minimum to be recognised as a relapse is 24 hours). There is no “normal” duration.

It is not essential to have a lumbar puncture in order to be diagnosed. I, and several others here that I know of, were diagnosed without.

Most neuros still “like” to have one, even though NICE guidelines say it should no longer be a routine diagnostic step, and should only be needed where other evidence is inconclusive. Hence, declining to have one (as I did) may delay diagnosis until the weight of other evidence finally tips the balance. On the other hand, there is a small chance of people with MS still having a normal LP. Thus a clear LP cannot conclusively rule out MS, and you’d still have to wait for further evidence. So although a positive LP greatly aids diagnosis, a normal/negative one is about as informative as not having one at all!

IF your eight months of symptoms are all deemed to be a single (long) episode, you could not be diagnosed with multiple sclerosis yet, as it needs at least two distinct episodes, OR for the much less common primary progressive MS, I believe continuous deterioration for at least two years. So a single episode lasting eight months would not meet either of them.

I do not understand your neuro’s comments about “looking well”, as MS is an invisible illness for many - especially in the early stages. How you look has absolutely no bearing on whether you do or don’t have MS. CNS lesions can’t be seen on the outside!

If you become a regular to these forums, you’ll notice a common complaint amongst diagnosed people is friends or relatives saying: “But you look so well!” They’re not lying or being sarcastic - it often doesn’t show, and there’s no reason it should. Unless we all had glass heads, why do people expect to see a brain lesion?

So I do find your neuro’s comments a bit peculiar in that respect - if you could tell by appearances, we wouldn’t need MRI machines or lumbar punctures.

But otherwise, I do understand why he doesn’t have enough evidence to proceed to a confirmed diagnosis.

Tina

3

Hi Tina,

Thanks very much for your response.

At the time of my visit with the neurologist my leg and foot was completely numb and I couldn’t feel a thing but I was able to walk normally and all the tests he did were good. I think what he meant by the “looking well” comment was that I didn’t seem to be walking differently or anything. It wasn’t until 2 days after that I was limping and struggling to walk properly.

I am waiting for another MRI at the minute, if it shows new lesions would this lead to a diagnoses do you think? How long does it normally take to get a diagnoses?

Thanks

4

Hi Tina,

Thanks very much for your response.

At the time of my visit with the neurologist my leg and foot was completely numb and I couldn’t feel a thing but I was able to walk normally and all the tests he did were good. I think what he meant by the “looking well” comment was that I didn’t seem to be walking differently or anything. It wasn’t until 2 days after that I was limping and struggling to walk properly.

I am waiting for another MRI at the minute, if it shows new lesions would this lead to a diagnoses do you think? How long does it normally take to get a diagnoses?

Thanks

5

Hi again,

I would never like to place bets on these things, as they have quite stringent diagnostic criteria, and if anything doesn’t quite fit the bill, they won’t (can’t!) diagnose.

But yes, in theory, new lesions at the next scan could lead to a diagnosis - that’s how I was diagnosed. I say “in theory”, because if there’s any room for doubt - lesions not in new places since last time, or not quite the right size and shape to definitely be an MS lesion, they will tend to reserve judgement.

Tina

6

Thank you for your help :slight_smile: