Well hi all - My names Andy and am a 48 yo male with ‘‘MS / probable PPMS’’ according to my discharge letter !
Have been gradually getting worse symptoms for about 5 years ish - starting with stubbing toes when walking etc, up to where I am now on crutches pretty much full time.
Had a weeks holiday at the hospital requested by my neurologist where I had my 2nd LP, VEP, usual bloods, NCS and enough physical exams to make a horse shake - this on top of 4 MRI scans - the last one showing some lesions and the NCS giving up some fairly big results but at the time of leaving they were still waiting on results for the VEP and bands from the LP with a return to the neuro in about 3 months to discuss things.
I’ve applied for DLA about 12 months ago and have just had the tribunal case date set so thats another worry out of the way one way or another !
Just for the record Im currently on 50mg Baclofen in 10+10+30 per day - 3x 300mg Gabapentin a day and since being in the hospital 5mg of Oxybutinin twice a day (my personal favourite as I seem to have a normal bladder again) along with Vit D of 20,000 iu every 2 month !
Hi and welcome aboard this merry (and sometimes not so) ship!
Not everyone here has had a diagnosis of MS (including me…but I was mis-diagnosed with PPMS for 7 years, so i am an honourary member!)
I take it you were refused a DLA and so an appeal and tribunal ensued. It can take an age to get a result.
As the tribunal was recent, did the board see how much worse you are now than when you first applied? I hope that was the case and you do get awarded the amount you should.
Hi Andy Welcome to the forum! It’s a great place for support and where no question is is a silly one I’m newly diagnosed just at the end of last year so it’s all still new to me. Good luck at your DLA tribunal when it comes! Take care Polly xx
Hi - the tribunal is another 3 weeks away and the way I am now I’m sure they should be able to see how bad I am !! Hope your mis-diagnosis turned into something better xx
Why did you have so many MRIs ? were the first ones normal. Also why the need for the second LP. I have been investigated for MS (probable ppms) but tests have proven inconclusive as LP was normal and only one lesion seen. Also what is the NCS test - I have never heard of that before.
Hi Moyna, As you’ve pretty muched guessed the first MRIs didnt really show much - some slight change in high something or other but inconclusive !! Likewise the first LP was normal !! NCS is the Nerve Conduction Study - ouch !! Needles in muscles and electric pulses !! Again first time it was pretty normal but the last showed up some problems specially when he did the throat and jaw !! And boy did that hurt !! And if you dont ask questions you wont get answers !! Believe me I’m probably going to annoy everyone here with questions !
Andy, welcome to the forum. Sorry to hear you have this diagnosis but glad you have found out what is causing your symptoms. Do you mind me asking why they tested your throat and jaw - do you have some symptoms in that area? Thanks Leah
I don’t know if this comment is going to be what you want to hear or not (apologies if not) … but I have just had a NCS so thought I would add what I’ve found out - I thought this might help other people too.
A nerve conduction study (NCS) is a test of the peripheral nervous system (the nerve endings), whereas MS is a disease of the central nervous system (the brain and spinal cord). That means that a NCS is used to check for alternative diagnoses - things like trapped nerves which could cause tingling etc. In a NCS they create an electrical signal (small electric shock) on a nerve and then measure the response to that a little further down the same nerve. They are not looking at the way in which the stimulus travels to the brain (central nervous system), just how it travels down the end of the nerve.
The test that is similar but which examines the central nervous system (brain and spinal cord) is the evoked potential tests (EPT). In an EPT, they put electrodes on your scalp to measure electrical signals arriving in your brain. The stimulus varies according to which nerve they are testing. For the optic nerve you have to watch a black and white checkerboard pattern that keeps switching, for the auditory nerve, you have to listen to lots of clicks through headphones, and for sensory nerves in the arms and legs, you receive small electric shocks (in the same way as you do for the NCS). The difference, though, is that they measure your response to the shocks in your brain, not at the end of the nerve.
I have had both tests and haven’t had the results yet, but I do know that the person doing the EPT had some problems getting a reliable response to electric stimuli on my ankles (I just don’t know if this is significant or not until I see the neuro again) whereas the doctor who did the NCS didn’t find any problems at all. He actually said “you’ve got very good nerves”! I was initially excited to hear that but later realised that doesn’t mean I don’t have MS, in fact in some ways it makes it more likely as the strange sensations I’ve had cannot be explained by nerve ending (peripheral nervous system) problems. Of course, I guess there is nothing to stop someone having having problems with both central AND peripheral nervous systems. If that’s the case for you, Andy, I’m really sorry to hear that
Sorry if this is long winded but I know its quite complicated so tried to make it clear for everyone.
Hiya Leah, they were doing the nerve conduction studies and as my speech gets slurry and sometimes find it hard to swallow and get to choke occasionally they did a some tests in that area which showed up quite a strong signal responce !!
I’m newly diagnosed just at the end of last year so it’s all still new to me. Good luck at your DLA tribunal when it comes! Take care Polly xx