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11yrs and still my consultant won't treat my ms any advice welcomed

Hi to all

i am new to the site but my local ms branch said give it go there are really helpfull and supportive so here goes. I had a car crash in 1999 and suffered a spinal disease which through the accident i was diagnosed with ms by Stoke on Trent Hospital. I had just had a baby in 2002 and they decided to test for ms after i had given birth as ms relapses after birth which i did for 4 month’s. I had lesion’s on both optic nerves and delayed responses to the eye nerves. Now it’s 2012and im still fighting to get medication for ms. I can’t be admitted to hospital due to childcare problem’s i have no family so when i relapse my g.p is fab he treat’s me from home. The problem i have is the following

my epliepsy is effected by beta interferon and there is a risk of another steven johnson’s syndrome

I have had to much steriod prednisolne so i need to have a break as i have arthritis so they don’t want osteoporoiss to set in

Finally i suffer with very low blood pressure so avonex and rebif will make this worse

Im sorry to waffle but ive hit rock bottom i don’t know how to get round my epilepsy consultant to get a second opion i have been refered to a ms consultant but my nhs as refused as i already have a epilepsy consultant arggg im getting no where please help.

Hello, and welcome to the site

What a tricky situation! Do you have an idea about what treatment you would like to be put on? If you can’t have interferon, then the only option as far as first-line disease modifying drugs (DMDs) are concerned is Copaxone. Is this contraindicated with your other conditions? Tysabri is a possibility too (assuming you meet the criteria), but I’m not sure how that fits with your other conditions? This is interesting though: http://resources2.investorvillage.com/mbthread.asp?mb=160&nhValue=435038&nmValue=435078&dValue=1&tid=9563311&showall=1

How supportive is your epilepsy consultant? Do you think he would temporarily discharge you and refer you to an MS specialist?

Have you considered writing to your MP?

Have you spoken to your local PALS?

What is your GP saying?

One thing that you need to consider: DMDs do not cure MS. The best you can realistically expect from Copaxone is a 30% reduction in relapse rates. You might be luckier, but there are absolutely no guarantees. Tysabri is much more effective (about 70% less relapses on average plus a decent effect on progression), but the eligibility criteria are tougher and it means attending a hospital once a month (can you do this?).

Couple of other things:

  • steroids do not do anything to the outcome of a relapse; they only shorten the duration of relapses when and if they work.

  • if you meet the NICE criteria for DMDs (and you can argue against the contraindications clause), then I believe you can take legal action to make your PCT play ball. I’m afraid I really don’t know much about this other than it can be a hard slog, but you might be able to get some help from the MS Society with it.

I wish I could think of a solution.

Good luck!

Karen x

Oops! I should have said - try posting on the Everyday Living forum too, if you haven’t already. There are more people on there and there just might be someone with a good idea or two :slight_smile:

Kx

Thankyou Karen for your reply

My G.p is fab he was a consultant then went in practice so im luckly. I had a meet today with him and he has told the nhs in question my human right to a quality of life is being abuse and denied and they granted a referal to a ms consultant who work’s with the m.s society but at a cost. My nhs is struggling for fund’s so i have to sacrifice a trial of a new epilepsy drug from America for the referal. I won’t stay with the new consultant because were i live we go to a ms consultant who either agrees or not if ms is the problem. If he agrees ms he discharges you and then referers you to the main neuro center for ms to have ms treated and monitored. The funiest part is the main neuro center were he will send me i already attend for my epilepsy and the ms department is one floor down.Yes im exhausted explaining it and a waste of resources how is refered in your area., is it as long winded and an headache it would good to know

Hazexx

I hadn’t realised you hadn’t been diagnosed yet.

How complicated they’ve made it for you :frowning: And thank heavens for a GP who knows the system so well!

To be fair, it’s probably wise to not do the epilepsy trial - if you have MS, it really could muck up their data, and more importantly for you, it might mean that the drug being tested isn’t suitable for you.

I hope you the MS consultant is a good one and that you get some answers very soon.

Karen x

Hi ya

I think if it were me then I’d go with the ms consultant and see what he makes of it all and leave the epilepsy trial for now - but then I guess that depends on how bad your epilepsy is too. It’s a bit of a minfefield isn’t it. Hopefully once you’ve seen the ms consultant things will be a little clearer and medications for both can be arranged that won’t react against each other.

Good luck - let us know how you get on if you can (or want too)

Debbie xx