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referred to see neurologist at last

Hi all,

My appointment last week with the got sidetracked as they started me on stronger dose of baclofen. Today, the gp checked all reflexes, examined my eye movement (a bit difficult as ive double vision) and yes!!! I’m going to see a neurologist finally. Waiting time is a bit bad - 31 weeks, but after waiting 23 years since last time or 29 years since it all kicked off, I’m not complaining.

Toothache in my legs was getting worse and now twitching in my eye is driving me nuts.

Keeping my fingers crossed that they find something positive this time instead of sitting on the fence.

Babs

whats the diffrence between god and a neuro,god dosent think hes a neuro,hope u get something to help

2 Likes

Good luck with the appointment…when you finally get it.

I did the rounds for eons and was mis-diagnosed with PPMS for many years.

Still only got half a diagnosis, with no known cause.

Hang on in there kid!

pollxx

hi Babs,

Well done, you’re moving in the right direction. I can’t imagine how frustrated you must have been/are feeling, you must have been tearing your hair out . Write yourself a list of what you want and need to discuss. If possible, take someone with you, it’s a good idea to have a second person to take in information. sorry if I’m stating the obvious(?!).

wendy x

lf you can find out who is good neurologist,in your area, who knows about MS, [few and far between] it might be worth getting a consultation privately to begin with. l have found this is a good way to fast track any further tests etc. You can ask how much it will cost - l think it is usually about £150. But is worth it just to get the ball rolling and give you some answers and take the worry and stress away.

seeing a consultant (ortho.) privately (£150) was what got me sent to a neurologist in the first place. prior to that. I’d fallen on ice, and gone into a big relapse, after which i was treated for what was believed to be a lower spine injury. when i just got more and more symptoms, no-one really believed me. that’s when i got a private consultation. i was with him for an hour. he checked me over, and, most importantly, he listened to what i was experiencing. he told me that he suspected a neuro. problem. he said that he wanted me to have my first MRI. When i said that i couldn’t afford to be a private patient beyond the consultation, but it wasn’t a problem. i was MRI’d within a couple of weeks and saw him again as a NHS patient, he told me it looked like MS and referred me to Neurologist friend. To say that it moved things along would be a serious understatement. I think that the NHS is one of the very best things about this country, but some times it helps to make a detour in a different direction.

sorry to ramble,

wendy xx

Hi all, sorry its been so long to acknowledge , but been trying not to dwell on the stupid symptoms too much. However, they’re getting me down big time so I’ve made yet another appointment with the gp to see if they can try and supplement the baclofen with something else. At the moment, I’m taking 0.2mg x 2 tabs buprenorphine 3 x day which is the Max apparently and 10mg baclofen 2 x day, but I’m also taking 600mg ibuprofen 3 x daily to supplement. I dont know if I can take anymore. I’m also using my tens machine as well. Surely, there must be a way of getting the symptoms under control!!

Thanks anyway for all of your good wishes and if there’s no chance of seeing a neurologist short term, I’ll pay privately. Isn’t it funny, don’t bat an eyelid at paying a vet £300 for a pet, but baulk at paying off ourselves.

Thanks and stay positive

Babs

Hi again. I also paid privately for my first neuro appointment. It was because there was a 10 month wait back then! I believe NHS guidelines say it has to be done within a much short timescale. It cost £175.

The neuro worked both privately and in the NHS. Yes I queue jumped and I know some folk are against that, but…its our choice.

I do hope you can get those nasty symptom’s under control. I was told to adjust my baclofen dose as needed. I went up to 100mg in 24 hours. But it caused my legs to weaken too much. 75mg was better.

Love Pollx

31 weeks seems an incredibly long time to be waiting. Too long. I’m sure there are other hospitals with much less waiting times.

hi again babs,

my neuro told me that if my pain symptoms increase, that there are always different pain relief options available to try. talk to your gp/neuro/whoever it takes to get these symptoms under control. it’s horrible to be dealing with daily pain, but please do try getting other things to have a go with. leap frogging a medical stage is necessary, particularly with all the pain. then go back to the NHS.

take care.

xx