Update...

[zoefromsussex]

I thought I would update those of you who have followed my posts so far. Yesterday I went to see my neuro and he has signed the paperwork for me to start Copaxone so now I just have to wait for the drug company to arrange for a rep to come and teach me how to inject.
I mentioned my leg issues to the neuro and after having me hopping, walking on my toes etc he announced that weakness obviously isn't a problem and I should try going to the gym!!!! (I'm not overweight or unfit, I should point out)
He basically tried to imply everything is in my mind because I have a confirmed diagnosis!
He also mentioned the cost of dmd's to the taxpayer and said I might be taking a drug even though another relapse might never happen.
The whole thing has left me feeling slightly humiliated as if I'm not 'bad enough' for treatment and now I'm doubting myself all over again. What if I am imagining stuff?!
Luckily my gp has arranged for me to transfer to the neurological centre to see an ms specialist instead of a general neuro. So hopefully I won't have to see the dreaded dr again! I know this is not just me being sensitive because I was at a dmd info session recently and met another patient he'd upset.

[zoefromsussex]

No, I don't pay a prescription fee for the copaxone because it's a consultant's prescripton and doesn't go via the chemist/pharmacy. Basically, the neuro writes the prescription & the next I know of it is when the drug courier delivers the copaxone (just over a month's worth at a time I think) I see your point about the worry of paying for your care if you haven't got insurance and the NHS is not all bad. I think a lot of the NHS troubles stem from letting people from outside the UK receive free treatment. There's been a huge increase in women coming to the UK to give birth, for instance!
I love your comment's about the neuro! They've cheered me up! I did actually ask if he fancied swapping places and he said if he had MS he would 'probably want treatment'...I'd say he would DEFINITELY want treatment!

[bubbles_04]

Hey Zoe!!

I hate UK GPs, sad to hear some neuros aren't much better. Forget him and his comment on the taxpayer money, thats the point of paying taxes so there is free healthcare for all. I should really say freeish.... Being a UK girl, living stateside now I think the NHS is better. I think the hospitals are more "nice" here but having to worry about how you will pay for treatment etc if something happens is not fun. I have insurance from my job here and so far it's been totally amazing I'm paying for pretty much nothing :). Thats not true for all though and I think free healthcare is essential. Also its not the taxpayers here footing the bill but the companys or individuals paying the insurance costs. Sorry I'm getting off topic!!

Do you have to pay a prescription fee for your copaxone? I'm really pleased you are switching neuros!! Don't worry about that knob (a rude word only in the UK, so thought I can get away with it, sorry if not :D). He can whine about the taxpayer until the cows come home but do you think he would switch places with you? Take your MS? and then refuse the drugs for the poor taxpayer?? I thought not.... Sorry I'm going on.... Ok final thing! Good luck with the copaxone!!  

[Dagun]

I´m happy to see that you´re going to get rid of this neuro, the ms center will hopefully take better care of you. You´re probably to kind and polite, so this neuro takes his everyday frustrations out on you. That just shows his bad character, don´t waist a thought on him. Good luck with the Copaxone.

My best,
Dagun

[sllowe]

Sure is. Goes against all the evidence and results.

I'm doing well really, and thank you very much for asking :)

Keep on keeping on Z

[zoefromsussex]

Quite shocking really, isn't it?! I get the impression he didn't want to diagnose MS at all but the senior neuro over at Akinson Morley (a brain/spinal specialist hospital in London) had already diagnosed me with RRMS on the basis of two seperate attacks of ON, a positive LP/VEP & MRI. I think my neuro wanted to stick with a diagnosis of CIS and here in the UK you aren't given a dmd unless you have definite ms. At the info session I attended recently to choose my dmd, I met a lady who had also switched after a bad experience with the same neuro. He actually told her she wasn't bad enough for treatment! We've both switched to a dr who leads MS research in the South East so fingers crossed he'll be better!
How are you keeping lately? I hope you're doing well?

[sllowe]

Zoe -

Don't you let that doc make you doubt yourself lady. Going to the gym can never hurt but use him for the meds script.

This doc in not in his right mind to indicate that you are costing tax payers money for meds and may not ever have another attack! If the doc cared about your future the statement would have been completely the opposite - the meds you are going on can prevent progress to definite MS, and future attack.

This is where the meds work their best - it's the very reason they are indicated for use of CIS, and RRMS - in the early inflammatory phases. Geesh! It would cost them more medically if you needed full-time medical care, and volumonous amounts of meds to maintain some quality of life.

So glad you will be in the hands of a specialist who knows what's best.

Feel confident in knowing the meds can do this - I'm sure the specialist will support this very fact too.

[zoefromsussex]

Oh and Lulu, yes you're spot-on about the NHS!!! I appreciate the taxpayer foots the bill but they also foot the bill for all the benefits cheats and immigrants we have in the UK. It's crazy that he even mentions it really! I'm a housewife so not currently paying tax but my husband does and I was working full time for 16 years before starting my family so I paid in way more than I've ever taken out! I think the American system of private healthcare probably works out better in many ways.

[zoefromsussex]

Thanks. I think he's an idiot in general but I think we clashed in particular because I challenged him on a couple of points such as when he said that the copaxone wouldn't reduce the severity of a relapse! He said I fall into the 'grey' section of whether or not to treat because strictly speaking only my eyes have been affected so far. I'm still quite peed off about his comments about my legs as I am not the type to imagine symptoms and I really have had more tingling and 'wobbly' days. He said it's 'just' nerve damage and he also said the bright lights of a supermarket wouldn't cause me any problems when I mentioned my dizzy/wobbly spells seem worse in bright, hot supermarkets. Hell, I LOVE shopping so I'd hardly make that up!!!!! I am so grateful to you lovely people for letting me vent! Thanks

[SarahL2491]

glad you are dumping this guy!
yep Lulu, am trolling thru forum instead of getting ready!  :-)

it is not all in your head, don't even go there!  hopefully your new
neuro will be much more attentive!  Time to get pro-active!

[supermum_ms]

I am soooooo glad your going to get a new neuro, and one that knows MS, the one you just saw, fits the catagory of a TOOL!  

DO NOT let this guy get in your headspace, laugh at his [fill in the blank] audacity, seriously its what I'd do. As one of our own likes to say "I can do anything for a minute" which is right on the money.

Your not going to let this 'tool' make you wait until your disabled enough for him, so let it go, move on and put it behind you. Your doing the DMD's so that you dont get bad enough, if there is that chance you'd be mental :o) to not take it so leave him in the tool box where he belongs!!

Hugs.......JJ

[If we still did the friday neuro roasts, he'd be there lol]  

[Lulu54]

Time to finish with this one and start fresh with the Neuro center docs.  We do know that not all of these docs are as&es and your next one is hopefully great.  The cost to taxpayers?  NHS talk, huh?  I hope you reminded him that you are also a taxpayer, but it wouldn't have been worth the debate.

Good luck with the copax start  -you will do fine, I am sure.  And stop doubting yourself. Don't let his comments get in your head with doubts.