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confused

hi guys hope you are all wel but.

im a bit confused because i saw the ms specialst before christmas

he was awesome in his approach to all this such a nice guy !!!
he said everything else has been ruled out and the only thing left on the table is  PPMS
we had a long chat about my history and ongoing symtoms after he gave me another neuro exam .

he said he could see things have changed in my exam with hyper reflexs and increased muscle tone but because my scans were not giving him enough info just to be 100% sure he wants me to have a samatosensory evoked potential test to confirm my cns has been compromised in two places as my vep was abnormal. and he knows my spine has been hit cos of the non compressive myelopathy that he says i have

if it proves what he beilieves is happening to the nerve  signals he will cal the dx officially in a couple of months.
so now i got this report of my recent ssep test and it says its normal ??and i wonder if its all in the air again and will he brush me off
regards mick

Hi Mick, to be perfectly honest, I don't know. It seems you are stuck in that blo8dy place of almost having a dx. You will just have to wait to speak to him I guess and see what he says.

Sounds as if he is so close to making a 100% dx. Frustrating. I know people say that labels don't count but I think in a way they do. For us they do. It makes a difference psychologically somehow. 

Nice to see you on here as it seems to have been a while.

I really really hope he's able to confirm a dx for you.

Take care,

Pat x

hi pat

thanks for you reply

i dont post a lot but im lurking around every day lol

yea they say labels dont matter and to a point its true cos it wont change my decreasing mobility and muscle fatigue any

i feel so close yet so far to a dx whilst waiting for the results of my ssep with him saying ppms last time i was getting used to it . i go to an ms therapy class on tuesdays and a gym class on thursday and im just the same as all the others ther and i felt i belonged to the club lol.

and have made some new friends there and we meet up during the week at a cafe at a local park and as i said i felt like i was getting on with it .!!

but now feel like i have taken two steps back but we will have to wait a little longer but i think its coming

regards mick

Hey Mick, please do not think like that! Of course you are still a member of the club!!! There are LOTS of people who don't have the 100% MS diagnosis, but have all the symptoms. They are as much part of the MS community as anybody!

You promise me here and now that you won't drop out of your groups! I might just have to come over there and read you the riot act. You think you've got troubles now... you wait till you have me knocking at your door!!!

You are an MSer Mick... just going to have to wait a wee bit longer to get the doc's to agree. 

Today is Monday so you have your MS therapy group tomorrow. I will be watching you Mick and you better go... (be scared... be very very scared).

Pat x evilLaugh

Hi Mick, 

As far as I know the rule of two different systems being affected does not apply to ppms as it is often only the spinal cord that is affected. Have you had a lumbar puncture? As ppms is difficult to diagnose this is often used to aid diagnosis. I was diagnosed on having a positive lumbar puncture,deteriorating mobility when mri scans were clear. However after several years the last mri showed cerebral atrophy and chronic ischaemia which Im lead to believe is common in ms. My journey was a long and difficult one but an experienced neuro in ms can diagnose ms as the McDonald criteria is a guideline and is forever changing. The diagnosis to be honest didnt change anything apart from my constant looking for a cause and cure for what was happening to me. Your symptoms can however be treated without a diagnosis but I know how it feels to want an answer. I hope you get an answer soon but do not stop going to your club. I attended a ms club to exercise and when a new neuro decided it wasnt ms I explained it to them and they encouraged me to keep on going. I was later rediagnosed and kept going for as long as I could as the exercises were tailored to our needs. Keep going keep active and keep the pecker up. Anita x

 

hi

pat and anita

thank you so much for your comments

pat i went to my ms therapy class and told the neuro physio of the test results she said try not to bogged down by tests

i deal with ms patients all the time and she says i walk like a duck so i am a duck lol . and to keep coming to the class as she feels i can benifit and a name doe not change the way i am its ms period !!! the dx will come soon enough .

so i will be going i promise thanks again for the wake up call i know its ppms end of story so i will kepp fighting it . x

anita

my spine is the most effected my posture is all out of sink i get so twisted and sore the more i do iv been told its muscle weakness and spasticity .im on gabapentin and baclofen to help . the ms specialist dx me with non compressive myelopathy he just has to find the cause and he thinks its ppms just needs to nail it thats why he wanted the ssep .

i have had an LP butb they could not get the needle in due to my back muscles being so tight and i was so sore and twisted for days after it.. so i said i did not want another as i suffer enough with back spasms and hug type pain.

he said he would do another using madazalam to relax me if the ssep dont show him enough so reluctently im waiting for the appt for it .

thanks again for the support hugs to you both x

I was told in Nov 2002 that they are "80% certain I have PPMS - what you've got is what you get, it will get worse but you will know about it!"

Hubby went to the next appointment to ask how they could be 100% certain - told they would have to do an autopsy!

My reply - "No thanks, I'll settle for the 80% and get on with my life as best I can!!!

After nearly 10 years and many discussions on here and with others with MS, I've decided NO ONE KNOWS.  MS is still as big a mystery to the professionals now as it was then, every time I go to see my consultant I am asked to fill in questionaire to give them more info.  Talking to others with the disease you begin to realize that one person can go downhill very quickly, whereas others will seem to stay stable for years.

Moral to this?  "You know how you feel, you have to cope so make the best of what you've got whilst you've got it 'cos you don't know how long you will have it!"

Good luck, Ann

I was told in Nov 2002 that they are "80% certain I have PPMS - what you've got is what you get, it will get worse but you will know about it!"

Hubby went to the next appointment to ask how they could be 100% certain - told they would have to do an autopsy!

My reply - "No thanks, I'll settle for the 80% and get on with my life as best I can!!!

After nearly 10 years and many discussions on here and with others with MS, I've decided NO ONE KNOWS.  MS is still as big a mystery to the professionals now as it was then, every time I go to see my consultant I am asked to fill in questionaire to give them more info.  Talking to others with the disease you begin to realize that one person can go downhill very quickly, whereas others will seem to stay stable for years.

Moral to this?  "You know how you feel, you have to cope so make the best of what you've got whilst you've got it 'cos you don't know how long you will have it!"

Good luck, Ann

hi ann

thanks you are quite right it wont change me one bit knowing i will still have the problems i do but its helps with things like the dla and social when you have a kname for whats troubling you.

but like you said i dont think anyone knows for sure as everyone is different how it effects them and i have all the classic signs with my history and neuro exam but its just the scans and tests are not showing what they think they should

regards mick