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Preliminary Diagnosis of MS

Hello all,

I’ve been given a preliminary diagnosis of MS. I’ve had 3 MRI’s and am scheduled for a lumbar punctur on May 13th. My first MRI was scheduled after I had what was originally diagnosed as a migraine episode back in November (on the weekend when I had ALL the in-laws over for Thanksgiving dinner). The MRI was reviewed by a neurologist who was concerned enough to have a MS neurologist look at it. I have several lesions in my brain, it turns out. My last 2 MRI’s did my brain again and my spine. I’ve also had the blood tests done. I haven’t had any symptoms since the first episode. I won’t see the doctor again until after the lumbar puncture so I don’t know what the blood tests said.

I know that each person is different in their episodes but I have a couple of questions.

How often do the episodes occur? Is it every 6 months? every 6 weeks? I had trouble thinking straight, walking straight, and generally being alert when I had the episode in Nov.

I’ve had some general muscle weakness, tingling, and pain in my right leg for the last few months, can this be a symptom? My GP told me it was lack of exercise and a bad knee but I’m a bit dubious about that now.

Is anyone else getting treatment through Colchester Hospital University? Are they good? Are they pro-active? I prefer to get ahead of this and not wait for another episode or symptoms to occur.

As for the upcoming lumbar puncture…the nurse who scheduled me said I need to lie down for the first 3 days afterwards to ward off any headache. When she says lie down, does she mean flat or can I sit up in bed and watch the telly? I’m not much on lying flat or lying in bed doing nothing at all for that matter. But I really don’t want a headache! Must admit, lying in bed with my partner waiting on me hand and foot does sound interesting. :slight_smile:

I’m trying to stay positive and not dwell on what might be. My partner and I are getting married in Cornwall in August so I’m much more concerned about whether it will rain on the day than anything else.

Hi Texas girl and welcome! I’m sorry I can’t answer your questions as im still having tests and have not Been diagnosed. wanted to say hi, hope the wedding plans are going well? Back to ms the lp is nothing to painful but wanted to pass on some great advice that I got off here drink plenty, when i say plenty i mean gallons! and Driink plenty of caffeine full fat coke Is best. I was told to lie flat for two hrs, which I did at hospital then when home lay on sofa for rest of day drinking lots of caffine I was fine, I just went about my business the Following day. You will find great support on here and there are many people who know a great deal about ms Karen (rizzo) is very knowledgable Along with many more.

Hi I can’t answer your LP question as I never had one, but I am under Colchester General Hospital and have found them very good. I waited three months for my first appt then had a multitude of tests, referrals and appts over six months which ruled out every other cause and left me with the confirmed MS diagnosis. I have an MS nurse who I see every year (or sooner if needed) and a consultant who I see every year, so an appt every six months. I also have access to Physio. I’m not actually eligible for any DMDs yet as my relapses have not been severe enough, but the nurse can sort out anything you need via your GP for pain, etc. As for frequency of attacks, everyone is different. I had three in my first year (only realised in hindsight) then just one in the second year. I think it is quite normal to steady out. Hope that helps. Good luck with the wedding plans! X

hi.

I was diagonised last week however was prepared for it as i was in hospital for a while due to a quite bad realaspe however like the others have said everyone is different and with ms nothing is certain so just take each day as it comes and all we can do is hope…i had the LP in hospital-i was so scared but honestly it really wasnt that bad…they told me to lie down for 2 hours after but unfortunately i only lied down flat for 1hr30min(as was bursting for the loo) and as a result i got the worstttt headache for 3 days after so was not pleasant so i would definately advise you to rest as much as you can after to avoid this but maby i was one of the unlucky ones…plus i had a dose of steriods also so maby they added to the severity of the headache. so yea i think the idea of your partner waiting on you for a few days sounds like a plan :slight_smile:

hope you get some answers soon hun and good luck with the wedding plans… definately good distraction from all this…

xxxx

Hello and welcome :slight_smile:

Can’t help about the hospital, sorry, but I can tell you that 3 days of lying down is a lot more than most people need after an LP so you’ll be unlucky to have to do that.

It’s quite unusual for someone to be (provisionally) diagnosed with MS after only one attack of symptoms so I can only assume that there was at least one more lesion on your second batch of MRI scans? The reason I say that is that the McDonald diagnostic criteria for MS stipulate at least two attacks or one attack and evidence of new activity on a subsequent MRI. This is because there are various one off things that can appear to be MS and it’s only when it happens again that they can be properly ruled out.

The obvious question from the “new activity on a subsequent MRI” bit is how can there be new activity on the MRI if there haven’t been any new symptoms? The answer is that “clinically silent” lesions (lesions that don’t cause any observable symptoms) are a typical feature of MS.

Which sort of brings me to your question about the timing of relapses. Which, unfortunately, I can’t answer :frowning: The truth is that, like most MS things, it varies. I’ve gone years without a relapse, but then had lots in one year. Others may have only very rare relapses (even decades apart), but get very bad ones while others may have lots of little relapses, and so on. It is so variable, any average is meaningless :frowning: The upshot of that is that there is absolutely no point in worrying about it: what will be will be, deal with it if and when it happens! Worrying needlessly about something will just get in the way of enjoying life and life is far too short to waste :slight_smile:

The problems with your right leg may well be neurological (sounds like it to un-medically-qualified me anyway!), but you would probably be best to ask your MS nurse or neuro about it. They may be an after effect of the relapse in November or they could be a second attack. Hopefully, if it’s a relapse, it will gradually improve.

Cornwall in August will surely be absolutely glorious! Fingers crossed for you :slight_smile:

Karen x

Thank y’all so much! I feel much better after perusing this forum and reading your answers.

Emma, you make me feel so much better! Every time I’ve been to Colchester for treatment of any problem, they’ve been absolutely great but nothing had been of a chronic nature. The nurses there are angels.

Coco, I already drink enough diet coke to float a battleship but I’ll happily drink full-fat coke for a couple of days! :slight_smile: Better yet, my old favorite Dr Pepper.

Rizzo, I think it was the sheer number of leisons that startled the doc into saying MS. He did say it could be some other neurological disease and the blood tests were to rule those out. I believe the 2nd and 3rd MRI was to compare with the first to be sure of the diagnosis. I also had some sort of black spot on my left eye that gave some concern. But like you said, nothing can be done about any of it for now. So for now I’ll concentrate on getting through the lumbar puncture and being a lazy cow for a few days after. :slight_smile:

Thanks also for all your well wishes on the wedding. It’s nice to have a distraction. Also have the 2nd wedding in October in Texas so my year is way too busy to be worrying about something I can’t do anything about right now.

Are you under Dr Sharief now? I’ve seen him twice so far and he’s been lovely (I was only diagnosed last April). He’s the MS specialist at Colchester so you’ll need to see him to look into any DMD eligibility. Zoe Evans is the nurse and she’s there for the day to day stuff. She’s good at returning phone messages, which seems to be a weakness of some MS nurses as they’re just so busy all the time. It’s definitely good to have a distraction from all the MS stuff (mine being a 3 and a 5 year old to run around after!). Take care X