don't know what i am.......

don’t know if this goes to the forum or not…but here goes…

where do i start… i got the flu April last year and got gradual pins and needles from feet to thighs whilst at work,went to dr’s…passed onto Neuro spec… MRI scan brain and full spinal…got result within the week… Transverse Myelitis with a single lesion on brain… but the Neuro won’t call it Ms until i have my second hit (lesion) pins and needles have not gone away, and this is a year and a half later… gabapentin now up to 700mg 3x a day…and omeprazole 20mg to deal with the gastric reflux… my gp dr is great, see’s me every 6 weeks or so to see where i’m at…

I have no idea what to expect next… my legs do there own thing…and left hands dextriety(can’t spell) is hit and miss… and so often get home after work and crash…(fall asleep) for an hour or so…feel better enough to take our 10 month dog for a walk (bought by friends and family to help get mind off problems)…

do i sound familular to anyone…???..

forgot to say i had a LP back in Oct and it came back with Oligoclonal bands-Positive intrathecal synthesis.

On a bad day my knees to my eyes look swollen but they feel tight and every time my feet hit the floor for walking a tens machine buzz goes through my knees into my thighs…making walking slower…


hi ade

make sure that any new symptoms go on your medical records.

a good gp is a treasure.

did the neuro say if he would be seeing you again?

the worse thing about being without a diagnosis is that you won’t be referred to a neuro physio.

is your balance bad?

do you trip a lot? which could be drop foot.

take care and enjoy walking your dog.

carole x

Hello Adrian, welcome to the forum

If you feel that your symptoms have become worse over the last 18 months, then discuss with your gp about being referred back to neuro. Perhaps it’s time to have another MRI scan.

Take care x

i am seeing neuro consultant in Oct… and i occasionally drop my left knee as i walk making me look like John Cleese(lol) just to help out as i work for a superstore company and spend 9hrs there on my feet all the time, i use a walking stick. One for a little help for those days i don’t feel brilliant and secondly as the company know i have problems its a bit of covering my ass so to speak… if i should hit the deck because of that hole thats not there…they can’t say i didn’t take measures to help myself…if we are out all day i take a sit down walking stick…just to give my legs a bit of rest…i have only once so far driven the car and not fully felt the brake pedal…but after a 9hr shift i am daily helping my legs into it because they won’t lift high enough…

Thank you Blossom… i have no idea if things are worse or not… but my gabapentin has been going up throughout …seeing neuro consultant in Oct anyway… I know i already have a ms nurse who i can contact…but i don’t really know what to do with her… i know there is a ms physio spec who i think i can walk in on (so to speak) but i walk 9hrs a work shift 5 day a week so i don’t know how they can help… i do use a walking stick at work just to help and catch me IF my left leg takes a drop and to make sure the superstore i work for don’t say if i should hit the floor, …why didn’t i take precortions… I know i find getting into the car after a 9hr shift difficult, i have to help my legs do that last few inches… bloody annoying really… i have added a bit more to my first post too…but its difficult to remember all the problems in order…whats important and whats not…

thank you Carole…i forgot to say i have added a bit more to my first post…its a bit difficult to remember whats changed and whats important and whats not…

I hate to say this, because things ate bad enough for you already, but are you sure you are safe driiving? On a bad day, would you be able to get your foot on the brake quickly enough to do an emergency stop if you needed to? If the answer is no, you may be eligible for funding for having hand controls fitted to your car, so you may still be able to drive.

Hi again Adrian

Ask your gp to refer you for physio and occupational therapist assessment, I think you would find this really helpful. Also make contact with the MS nurse…you can consult with her on the phone, when your on a break. Sounds to me like you need some support.

What kind of support is work giving you Adrian?

Noreen x