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Would be very grateful for some advice please

I would be very grateful for some advice please.

After waking up after a 'nap' one evening at the beginning of June 2011, I found that I was numb from the waist down. At first I thought I'd trapped a nerve & 8 days later, was taken to the local A&E. I don't know why, but this little voice inside my head said "it's MS", which I told the Registrar who I saw at the hospital..

I went to see my GP who referred me to a Neurologist who arranged an MRI & several blood tests. Despite trying to chase results with the hospital, I was getting nowhere, out of desperation, stress & the fact that in 6 months, my symptoms were gradually getting worse (my left arm, hand, leg & foot which started as minor numbness had become as bad as the right side & I was no longer able to use a pen & could barely walk) I resorted to writing a report of my experience on the NHS Choices website, which did the trick, as the ball started rolling pretty quickly after that! Turns out the Neurologist I'd originally seen in June had "left without giving notice", which sounded pretty iffy & confirmed my instinct that he wasn't very good at his job.

I eventually got to see a different Neuro, who was really good & spent at least 2 hours asking questions & doing various tests on reflexes etc. (Unlike the first Neuro who spent 10 mins asking me the same 3 or 4 questions over & over again & then sent me on my way).He showed me the MRI scan results & finally confirmed MS.Thankfully he did not refer me for a LP). I was prescribed a 3 day course of heavy steroids, which actually made me feel much, much worse.

I am now awaiting an appointment with the Neuro to arrange treatment, the MS Nurse says it should be at the end of March.My problem is that my hands are so unreliable (I have lost all feeling apart from hot, cold & pain - I can't even feel that I am touching the keys on this laptop) - I constantly drop things & if I have a sandwich in my hand, my hand screws the sandwich up in a ball, just as a very young child would do.It's been 5 - 6 months since I lost all feeling in my hands, with no sign of it returning.  I thought not being able to walk would be the worst thing, but this is so depressing, not to even be able to use a pen is miserable. Every little simple thing is now a major hassle, even doing up zips & buttons.

I know my only option will be injecting drugs into myself, but I really don't think my hands are safe enough to do this & I know that Nice (or Nasty as I like to call them!) have turned down the only oral drug that is available.

Has anyone else had this problem with their hands & what options are there for people who have, if any?

Thank you very much for your kind help.

Jayne

 

Hi Jayne.

 

If you can't reliably use your hands, I can't see anyway that you would be able to self inject. The options would be to have the injections done by someone else or to go onto Tysabri which is done by infusion once a month at hospital. There are extra eligibility criteria to get onto Tysabri so it may not be available for you, but it is also probably your best bet of getting some functionality back in your hands - some people who are on it find that their existing symptoms improve - so you might want to consider asking for it if the neuro doesn't suggest it. (You need to know that there is a very very small chance of getting a dangerous brain disease, PML, if you are on Tysabri. This is only if you carry the normally dormant JC virus though - there is a blood test for this these days.)

 

I'm afraid I don't know of any med or treatment that helps numbness letdown There are tools that can help, e.g. dragon naturally speaking voice recognition software so you don't have to type, kitchen aids for opening & holding things, etc - an occupational therapist should be able to help. Time may also make a difference. I know 5-6 months must seem ages, but there is still a chance that it could improve.

 

Well done on the NHS Choices website move - great tip for others happy2

 

Karen x

Hi Karen,

Thank you so much for your help, I really appreciate your advice. I've been feeling so lost lately, it's a great comfort to come onto this forum & read everyone's experiences & to not feel so alone. To know that there are wonderful people like you who help to make sense of everything & can offer guidance, especially to those of us who are newly diagnosed it's such a huge help. Thank you!happy2

And yes, if anyone else is slowly going out of their mind, being left in the dark not being told anything & getting the run-around from the hospital, a report on the NHS Choices website is well worth a try - it was my 'last straw', but it worked for me.