Still no answers

Hello everyone, So, after 4 yrs, 4 mri’s only the first one showing a lesion between c5-7, evoked potentials which show the pathways from my legs ‘consistent of demylenating disease’ and a lumbar puncture result app yesterday showing positive ‘thingumy’ bands, I am still being told, probably but not enough clinical evidence for a diagnosis. Am feeling very empty today, ESP as I dont have another app for a year unless I have another episode. I know ms can be hard to diagnose, but am feeling rubbish since the app. Sue

Hi Sue, did you say that your first MRI showed a lesion ? My first 2 MRIs (2011 & 2012) showed lesion on cervical neck but in the latest one (June 2013) it has gone. I have not had evoked potemtials done but my LP was negative for thingummy bands. My issue is with my right leg with progressive weakness/spasticity. Lesion gone but symptoms still there!

I am nearly 49 and I get the impression the older we are the harded to DX.

One far fetched theory is that it might have something to do with radiation treatment I had 23 years ago. My problems really only started 4 years ago.

I would be interested to hear your story.

Moyna xxx

Hi moyna, I am just turned 50 and also started symptoms exactly four years ago. Started with numbness in right arm which spread all down right side and left leg. Neurologist said the problem was with my brain and ordered brain scan which was clear. Then had cervical spine scan which showed the c5-7 lesion. Dx of myelitis with 50/50 of developing ms. Sensory symptoms come and go since then, with intolerance to cold when I feel like I am wearing damp clothes on one side. Numbness, tingling, comes/goes. When I walk quickly I get buzzing on the tops of my legs and buttocks. Also warm patches on my legs come and go. I also fall occasionally my left leg being my main weakness. If you dont mind me asking, How did your story start? What part of the country are you? Regards sue

Hi Sue,

I wonder why, with all those positive results, your neuro is still not giving you a diagnosis.

After 4 years of waiting, no wonder you are feeling low.

I was pushed hither and thither for a long time too. I still have only a half diagnosis, after 16 years!

Hang in there hun and hopefully you will get it sorted at some point.

luv Pollx

ps Keep going to your appointments and hang on to all the letters.

Sue, your case is SO SO similar to mine!

I have just read some of your past posts.

One neuro thinks I had an attack of myelitis in 2008 and suffering problems since that. THINKS - I am an unusual case.

In 2008 I had the loo thing were the left side felt as if someone else had sat on it - right side was cold. My left side of my back felt hot if I lent against chair. That lasted a few weeks. I also for several months on 2008 could smell the same smell in different places. I was never sure what the smell was , although it was unusual and weird that I could smell it at home or in shops etc. I think I had the hug once in 2009. Anyway the right leg spasticity did not star.t until 2010 and has steadily got worse. I have not had the smell or the hot leg for years now.

I also have a vanishing cervical lesion.

Moyna xxx

Hi sue, I think we’ve spoken before because we’re at the same clinic. Did you spend long with him? Did you get the chance to really quiz him? When I’ve seen him he’s always adamant with what he says. Did he give you any suggestions of anything in the meantime or just wait and see?

Hi sue, I did just post in your message but I didn’t see it come up? Anyway, I was saying, I think we have the same neuro as we spoke before. Did you get the chance to quiz him any further? Did he recommend anything in the meantime, anything to help with symptoms or anything? Whenever I’ve seen him, he’s always seemed quite adamant about things. I hope things get better for you.

Hi Sue I am from Belfast. Had a numb arm in 2005 (for about 3 months) - I was discharged after a clear MRI.

In 2008 I had some sort of attack - numbness, weakness , l’hermittes - loo seat hot on left side thigh! GP said virus. I felt a lot better after 3 months. Then a year later 2009 weak foot / drop foot after long walk. 2011 MRI cervical lesion and 2012 same lesion and clear LP. 2013 no lesion but right leg much worse.

Only treatment - baclofen.

Do you have spasticity or foot drop?

Moyna xxx

Hi moyna, Yes our stories do seem to follow a very similar path don’t they? I do not have foot drop or spasticity, just a weaker left leg. I have fallen a few times, twice in 6 days about 6 weeks ago and always onto the left side. Seems as though all of a sudden the leg is just not there. If I walk across a car park now, my 5yr old granddaughter who has been with me 3 times when I have fallen says, “well done granny, you didn’t fall over” I have had the warm leg (in patches) again recently. Things seem to come and go then there is something else comes along and makes you think ‘oh, that’s new’ and I just get on with it. I am lucky as in that since the first episode four years ago, I have not had anything major happen, mainly sensory things that just mess with your head. I am not on any medication, just ‘wait and see’ now. Frustrating, but part and parcel of the whole thing I suppose. How do you cope/manage on a day-to-day basis? Do you work? Very best wishes, Sue

Hi app666, Thank you for your reply, and yes we are at the same clinic. I did not see Mathew Jackson yesterday, I saw his registrar -Campbell something. A really nice guy, who did do some neurological tests which he said were mainly normal. He said that the positive lumbar puncture was another tick for the ms box but not enough clinical evidence to give a dx which in itself is not too much of a problem other than frustration. Nothing was suggested other than see how it goes and I don’t like to push too much as it sounds as though I am actually ‘wanting’ an ms dx. He said there were no other tests I could have other than another MRI. They have only ever done my brain and cervical spine, never any further down. He said he could arrange another MRI but as I am claustrophobic I declined, though since coming away wonder if I should have gone for it as my leg is my main problem and there could be a lesion further down my spine? The past four years have been very frustrating. How are you doing? Best wishes, Sue

Hi poll, Thank you for your message. I keep copies of all correspondence that goes between the gp and neuro in a little folder, mainly for my own reference as I tend to forget things so easily nowadays. I would like copies of my mri’s too, but am not sure if that would be possible? I am ok (psychologically) mainly, just have a meltdown any get upset every couple of months. It’s the not knowing what the future holds that’s scarey. I used to work for a nursing agency and have cared for a few ms patients who have been quite poorly so know how things can go if unlucky. My grandchildren keep me going though. My 5yr old granddaughter said that I won’t fall over any more because the dr out needles in my back (lumbar puncture) the innocence of children. With very best wishes, Sue

Sue, I was able to order a copy of my MRI from a hospital by paying £15 for it. I don’t know if that is a standard NHS charge.

Hi Sue, I am a systems Analyst (computers) although dont work full time any more as am full time carer for my son who is 20 and has Down syndrome and autism. The sensory issues with me have settled down to pretty much non existant now - it is really just the spasticity in the leg. Botox was my last hope and it has failed. I have only fallen once by tripping over my dodgy foot. My leg doesnt give way beneath me it just locks at the knee all the time. Sometimes I feel that I have a very slow progressing PPMS, although I did have an attack (unusual in PPMS), I have a clear LP , a clear brain scan, and now a clear spine MRI. Myelititis has been mentioned yet why would I recover from the attack and then start getting progressively worse a year later? After a myelititis attack you stablize after about 6 months and stay that way apparently.

Another theory has been put my way - damage from radiation I recieved 23 years ago.

Moyna xxx

PS. I have seen two neuros and am just about to go to England for a third opinion!

Moyna xxx

Hi moyna, You do have your hands full! I was told by my neuro originally that it could take up to 2 yrs to recover from the myelitis, then whatever you were left with then would be how you stay. I have symptoms that come and go, not always in the same place but the same area. Ironically, since seeing the neurologist on Monday I have had a warm side of my left foot and outside of my left leg. Typical that I didn’t have it for the app as it has been permanent since it started and not intermittent. I suppose I should keep a diary really. When are you over for your app, are you oing to the john Radcliffe in Oxford? Regards Sue

Hi I think the GP was going to send me to the Walton Centre in Liverpool. I havent got appointment yet. But today spoke to a neuro physio in Manchester ( I am thinking of trying Bobath neuro physio for this spasticity) and she said that sometimes after a myelitis attack it can leave you with weakness. Then (which she reckons has happened in my case) the body starts to compensate for that weakness and muscles get out of kilter and spasticity can develop really slowly without any change in the original myelitis. I definately had right sided weakness after the attack as I went skiing and found it difficult to turn left (pressing down on right leg) than turning right (pressing down on left).

Moyna xxx

Hi Sue,Have you been seen by an ms specialist? Regular neuro is not enough. Also you are entitled to ask for a 2nd opinion. Head to the National Hospital of Neuro to see the top people - Prof Thompson is one of the leading people and one of the few places where they have a diagnostic clinic - if needs be u get sent for tests the v same day.

Hi Sue,Have you been seen by an ms specialist? Regular neuro is not enough. Also you are entitled to ask for a 2nd opinion. Head to the National Hospital of Neuro to see the top people - Prof Thompson is one of the leading people and one of the few places where they have a diagnostic clinic - if needs be u get sent for tests the v same day.

Hi, i may be wrong but i think you need more than one lesion for a diagnosis, and do you not need lesions in the brain as well as the spine? again, i might be wrong, its very confusing!!

Thank you all for your replies, they are much appreciated. Since seeing the neurologist on the 14th oct, the following day (ironically) my left foot started getting (hot) over the next few days I had hot and cold feelings up my whole leg and to my waist on the left side. Saw gp last tues who was going to contact the neuro that day. The odd feelings have intensified over the last week and my leg feels weak about eight inches above and below the right side of my left knee. Will o back to gp Tuesday when I am not at work but am assuming this is another relapse? Not had one for two years, then two ears before that when the origional symptoms started. Should I ask for steroids to help the symptoms rectify? Have never taken them before, Best wishes, (and thanks for reading) Sue