Last reply 7 months ago
Neurologist Appointment

Hi all today has been a good day in a funny old way. After a flare up over christmas (bladder problems, pins and needles, stumbling and terrible fatigue) i have at last been to see my neurologist for the second time. I havent been officially diagnosed yet but at first meeting last year he told me probable M.S. The doctors didnt really seem very interested in helping me when i went to them and offered nothing to help with the problems i was having – though they did inform the neurologist of my symptoms which led to the appointment. Today the neurologist has listened to me and is arranging another scan as he thinks i have had a flare up as these are all new symptoms, my first symptom last year was vertigo and double vision. He is also arranging for me to see a M.S. specialist in birmingham, though apparently there is quite a long waiting list. I know this sounds silly but the best bit was being given something for my weeing for england problem and also having it explained to me what was happening with my bladder and why it was misbehaving lol. He is pretty certain it is M.S. so maybe this second scan will lead to a diagnosis and possible treatment. Felt like a weight had been lifted off me when i came out as i dont now feel quite so abandoned by the medical profession. I was so relieved to have somebody listen to me and explain things to me. I felt so much better when i came out of the appointment that i fell up the step lol. Oh well nothing new there then x

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stumbler
7 months ago

@linzzzi , well, I’m glad that things are moving forward for you, but not that you had problems over Xmas. It can’t have been easy, living with a diagnosis of “Probable MS”.

Was that enough of a diagnosis to advise your employers, to get discrimination protection and “reasonable changes”, refer you to a MS Specialist, have the support of an MS Nurse,or ………………inform the DVLA. Well, “probably”!!! πŸ˜‰

The upcoming MRI scan will provide a lot more information which should progress your case as far as formal diagnosis and treatment is concerned.

It seems that your bladder problems and fatigue were the worst of the new symptoms. “Neurogenic bladder” is a common problem with MS. However, a bladder infection, e,g, a UTI, will potentially emphasise any existing symptoms. Was an infection ruled out, usually by a simple dipstick test?

But, it is a way forward for you, although it does leave you hanging around again waiting for appointments. This process could be quickened, if you desired, by having a private consultation with the MS Specialist, then switch back to the NHS lists. But, this option does depend on personal finances.

Take care, especially falling up stairs. πŸ˜‰


joanne46
7 months ago

Hi
Just to let you know that I did exactly what stumbler suggests…I paid privately at the QE in Birmingham to see Doctor John Woolmore who is an MS specialist neurologist (Β£150) who there and then diagnosed me and put me forward for lemtrada which was via the NHS. All of my treatment after that was bus the NHS but Woolmore is still my neurologist. I received my treatment just 2 months later.


grandma
7 months ago

I’m not far away in Stoke and have not seen my Neorologist for 7 years. MS nurse is brilliant and knows more than him anyway! I didn’t have to pay, but I agree with Stumbler but you shouldn’t have to pay, it’s the old story if you have the money!Good luck with future😍 Jill


novemberrain
7 months ago

Your situation mirrors mine to some extent. I have asked my GP to refer me immediately to the MS specialist. My epilepsy neuro told me a year ago I had MS, I asked him outright. My GP last week says it’s “likely”. Wait, what? 2 disseminating events and lesions. But no MS symptoms really. Sounds like everyone is just watching and waiting (I have had it for probably 20 years). I have also asked for a nurse and been referred. Shall we start a sweepstakes to see how long this all takes?!


linzzzi
7 months ago

Ty all for your replies – i shall be thinking seriously about a private appointment after my scan results. Is Β£150 about the price i would pay now does anybody know x x


linzzzi
7 months ago

@novemberrain a sweepstake is a good idea – if i win i can pay to go private that way lol x


linzzzi
7 months ago

@stumbler i didnt have a uti at start of problems but after about 3rd test they found blood. Dont know if the constant weeing could of caused this but other symptons (pins and needles and fatigue) got alot worse until i went on antibiotics. However i still have the same problem now and have no infection – hoping these tablets help – neurologist has given me Oxybutynin hydrochloride. Does anybody else use this and does it work x x


novemberrain
7 months ago

@linzzzi I received a call from the GP surgery. He wont refer me to the MS consultant (unless I’m unhappy with the other epilepsy neuro which I’m not really). Could it in fact be due to wait times? πŸ˜‰
The good news is when I see the MS nurse, she will liaise with the MS consultant herself after seeing me. I hope she’s prepared for my barrage of questions! I won’t pay to go privately as I’m pretty good at the moment. Let us know how you get on with MRI and the waiting game. Btw I read a review of Norfolk and Norwich Neurology, someone had been waiting 40 weeks to start DMTs even after diagnosis and theyre still waiting. Go private if you can. Poor NHS πŸ€”


stumbler
7 months ago

@linzzzi , Oxybutynin is one of the meds prescribed to “quieten down” the bladder.

I did use this many moons ago. I’ve actually used all the medications for this problem at one time or another!

Here’s a bit of light reading for you, so that you can fully understand about this issue :-

https://support.mstrust.org.uk/file/bladder-managing-your-bladder.pdf

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