not yet diagnosed but have lesions on MRI in the left side central fold in brain and demyleating plaques

New diagnosis and before diagnosis
1

dear people,

this is my third week of these symptoms which i am about to divulge and i would greatly appreciate som help.

first my hands and wrist began to become aching and shortly after they began to become sore and swollen, this sorness and swelling was intermittent between my hands, so as one hand wuold get better the other one would swell up. this carried on for abuot a week until my hands became excruciatingly painfull, at this time i visited the doctor for some pain relief and he gave me (i think) 130 mg of steroid to try and settle the pain.

That night i awoke in a sweat and i was incoherantly babbling and calling for my mother, i literally could not speak or find the words i needed, through the course of the night i woulnt let my prtner take me to the hospital for fear of being banged up in lancaster loony bin, any way to cut a long story short, i eventually ended up at the cumberland infermary hospital and slowly regained my senses. It was then that the intermittent pain began again in my right arm, elbow and foot, some times i would wake up in the morning unable to walk and by the evening i could have been doing the tango because the pain had totally dissipated.

inbeteen all tis was the inermittent numness in my right forearm, fingers and palm, you name it on my right hand and in more than one occasion it has been numb or tingling, tight, sore cramps, loss of grip.

now things have taken a turn for the worst and it started with some weakness in my arm but has now progressed into total collpse of my right shoulder muscle, it simply does not respond, i cannot raise my right arm laterally or backwards the only movement i have is to bend my fore arm at the elbow, the top part is completely dead although i can still feel the skin etc, i just cant move it.

i have had spells of forgetfulness , night sweats, but have slept fine otherwise i think, i have also bben exteamly tired like and mixing my words if anyone was to speak to me while in this state, and then no sooner does the tired ness come, it goes agin i the snap of the fingers?

i m at the neurologist on saturday 11th pleas coud someone tell me this is ms and that it will get better

i am 39 and i have a manual dextrous job in the dental field and i have my own business and work only with my partner

any help would be appreciated

applogy for the spellig misstake but i m typing with my left hand

thanks

2

Hi,

I’m sorry, I cannot tell you if this is MS, and the only person who will be able to tell you is an MS-specialist neurologist - and even then sometimes only after some time and difficulty, as it’s one of the trickiest diseases to diagnose.

Your MRI result is suggestive of MS, or some kind of MS-like illness, but MS is not the only possible cause of demyelination. To complicate things further, it is possible just to have a single “MS-like” attack, but never have another. In that case, it never meets the “multiple” definition of multiple sclerosis, so would just lie on file as an unexplained incident, but would not mean you had MS - or necessarily ever will.

I’m afraid you may be in for a rather long ride to get to the bottom of things, so it’s important to understand diagnosis is hard, and it’s not just a matter of the experts not being straight with you. They have strict criteria about how much evidence is sufficient for a diagnosis, and they are not allowed to diagnose with less than that.

MS is a hugely variable disease, with probably no two people having the exact same symptoms (it depends where the lesions form, which is pretty random).

I’ve been diagnosed 4.5 years, and, we now think, had it some years (maybe even decades?) before that. However, I’ve never had visible external swelling anywhere, so this does not sound typical. I have never been babbling or incoherent either, although I do have some problems with short-term memory and concentration. On reading your post again, I wonder if this could have been a reaction to the steroids, as many people get “a bit manic” with them.

I’m certainly not disbelieving you, and I’m not saying it couldn’t be MS, because the symptoms are so unique to each individual. But some of those you describe do not sound typical, shall we say. I wish you good luck on the 11th. I’m assuming you are going privately, or have the NHS started offering Saturday appointments now? Also, because you describe these symptoms as only lasting three weeks, yet have already had an MRI and have a neuro appointment. On the NHS, this would typically be a 12-week wait, or even longer, so I’m guessing you are either a private patient, or not in the UK.

As far as I know, though, neurologists the world over use the same diagnostic criteria, so although you may get appointments much faster, they will still be constrained by whether there is sufficient evidence for a diagnosis. It is often that that takes the time, more than how long you wait for an appointment.

But see what he says on Saturday.

If it is MS, about 85% of people are diagnosed with the relapsing remitting kind, which involves significant recovery from episodes (relapses) in most cases, although it can be frustratingly slow.

Tina

3

Dear Tina

thanks for your reply. I too was thinking I could have had a bad reaction to the steroid , it was an injection in my butt. I was hospitalised and they first took a ct and then an MRI of my head which showed a lesion on my brain of 8mm by 4 mm as well as some other lesions of myelin deficiency plaque? I am not sure why I am being seen so soon or why it is a Saturday, perhaps it is because I am being seen in cumbria? I don’t know. The main lesion is on the left hemisphere an just in by the split that separates the two halves of the brain. There are no lesion on the right side. I think I have had some episodes before, but I didn’t know what they were and never sought advice. For instance I would have altered feeling in my mouth and hands giving me the feel that my fingers were realy thin And my teeth were tiny. also on other occasions I would wake up sweating and confused and the only way I could describe it is it was as though half my brain was still asleep. there have also been numerous occasions where i have woken with numb and pins and needles in my hands.in fact i actually bought a wrist splint shortly before all this as ithought it was a case of sleeping funny on my right wrist. ok good night i cant keep ths up now

Thank you for your time. I think I will just wait and see what the neurologist says on Saturday. ggod night

4

Hi,

I just wanted to say I hope it goes OK tomorrow.

I didn’t mean to scare you by commenting that the response is fast - it’s how it should be, in an ideal world, but I think we get so used to tales of people waiting weeks, if not months, it actually comes as a surprise if anyone is seen promptly!

Yes, there is a degree of luck involved - it depends what waiting lists are like where you are.

And if they are now offering Saturday appointments, so much the better - except for people like me, who don’t drive. Public transport is restricted at weekends, so it would be no good to me if hospital appointments started coming through for days I’d have trouble getting there anyway. It’s all very good in theory, but assumes everyone has a car!

It is not uncommon for people to realise, with hindsight, they had previous episodes they ignored. I know I did. I’m in my late 40s, and have been diagnosed over 4.5 years, but sometimes, even after this length of time, things come back to me from my 20s, that may or may not have been connected. Mostly they were minor things I didn’t worry about at the time, but looking back, they do seem a little strange - but obviously weren’t distressing enough for me to go to the doctor.

At first presentation, I had six brain lesions and 1-2 spinal cord lesions (I never really got to the bottom of whether it one or two, as spinal cord lesions are less distinct and harder to identify, so I don’t know if even the experts were sure - although ironically, it was the spinal cord abnormalities that triggered the search for brain lesions - not the other way round).

I was told that literally dozens of lesions were not uncommon in patients my age, so six was considered “not too bad”. I thought it was six too many, of course, but it did explain a few things.

However, lesion numbers alone are not a great predictor of how one might be affected. The fewer the better, but location tends to be more critical than mere numbers. Some lesions - possibly a majority - have no discernible symptoms, because the brain finds ways to avoid that area and redistribute the work. Such lesions are called “clinically silent” - they can be seen on MRI, but don’t seem to have any corresponding symptom. So don’t get too hung up on the numbers game.

I hope it goes OK, anyway - although looking at my watch, I realise it’s late, and you might not see this 'til you’re back!

Tina