Bit of a confused mess

Hello everybody, very new to this forum and relatively new to MS

I was diagnosed with RRMS last October and since then I feel like it’s been a bit of a roller coaster ride.

About two years ago my right eye went foggy. It lasted about a fortnight before it noticeably started to clear up. Obviously I sought treatment from my hospital where they had been treated for a different eye issue some years before. A different eye issue or so I thought, more about that soon. After this latest foggy problem I was referred for an MRI which I duly underwent and this then triggered a less than poor response from my GP. A report was sent to them with a recommendation they refer me to a Neurologist and so they filed the letter away and did nothing with it at all.

A few months later I had to undergo a top up medical for an un-related matter and they wrote to me GP, it was at this point they discovered the letter again, said oops, and referred me to a neurologist. It took almost 10 months to get my first appointment and it was then that at my first meeting with him he told me I had MS. It was like a massive punch in the chest and nothing like this had been discussed or suggested before. He based this diagnosis on the latest issue with my eye describing it as optic neuritis but he then told me that the issue I had with my eye many years before was likely the first instance of it. I had and MRI scan at that stage as well. There was about 7-8 years between these two episodes. He decided to refer me for a lumbar puncture.

My world was spinning at this point and whilst managing to stay away from Dr Google I did manage to find lots of information on here and the NHS website. Thank you all for that. Whilst waiting for the lumbar puncture I started to think back about all the other problems I’d had over the years and I wondered if they could also have been MS related. All while this thought process was ongoing I managed my painful shoulder with pins and needles in my hand. This latter issue was something I’d had for a long while but I put this down to a bad bed, bad sleep, not enough exercise, getting old etc.

Other things I’d had over the years included (and they still very occasionally occur) a numbness in the face with pins and needles in my tongue and for this I went to see my dentist thinking it might be dental related. My dentist assured me it wasn’t and said it was a problem with my trigeminal nerve. I’ve also had a weak leg on occasion again with a bit of numbness and pins and needles but self medicated with bed rest until it’s gone.

I’m getting to my point, promise, please bear with me.

So I had my lumbar puncture late last year and then got the results early January when the nuerologist confirmed RRMS. I told him about all the other things as well as the ongoing issue with my shoulder/arm/hand but he dismissed these. I have no treatment for the MS at this time and an appointment to go back in 6 months. I do feel like the Neurologist has fobbed me off and dismissed my other problems somewhat but I don’t know what to say to try to convince him. I don’t know if there is any treatment he can give or if it would help but I don’t understand why he is so dismissive of all the other ‘little’ things.

Looking back at the first instance the Neurologist is taking into account this has in total taken 8-9 years to get to this stage and my head is in a bit of turmoil.

If anyone has any advice I’d gratefully love to hear it. Many thanks for reading all my ramblings, it has already helped telling my story to others who would understand

Cheetah.

Hi, you could ask for a neurophysio examination. This can really help with pain, posture and they’ll suggest exercises to keep you moving. A neuro can diagnose you, recommend treatments if necessary, but if you have an ms nurse then that’s your go to person. They really know stuff. I hope you do have an ms nurse. They are getting rarer.

Thanks for the speedy reply. I don’t have an MS nurse, but have heard only good things about them and how they help as a first point of contact. Would I organise that through my GP or is it through the hospital and the Neurologist? Same question re the neurophysiology examination. Apologies if these are really basic questions but I do feel like I’ve been neglected quite a lot by my GP and Hosp.

Hi

Generally, when someone is diagnosed with MS, with what sounds like the relapsing remitting type, they are also given access to an MS nurse and some disease modifying drugs are suggested.

It seems like in your case, you’ve been diagnosed then hurled off to try to find your own way through the fog that accompanies the diagnosis.

Have a look at: MS Decisions aid | MS Trust The MS Trust has a load of useful information which you might find helpful.

If you haven’t been given the contact details for an MS nurse, try to find out how to be referred, either phone the neurology department of the hospital, or your GP and see if they can give you the contact info. MS nurses are usually worth their weight in gold. They are helpful whereas neurologists can be businesslike. They know all the stuff you need to get your head round and can guide you through access to DMDs and physiotherapists etc.

Sue

Thanks for the advice, looks like I have plenty to read this weekend and then some calls to make next week, I’ll probably start by calling the hospital Neurology department.

  • Hope this finds you doing ok.it’s a total minefield isn’t it?anyway ,I’m new to both this forum
  • And d x of m s.as well.I’m sure you will be able to get gr8 help&support from the knowledgeable people on here.it’s not been an easy ride for me regarding certain neurologists.as sue says m s nurse’s are fantastic so I really hope that you do get one asap
  • Take care …Rosie

Update Don’t want to mention who in case they want to remain anonymous but a member on here sent me a private message about getting in touch with an MS nurse. I rang the service on Monday of this week and this morning the MS Nurse rang me back. Some great advice and kind words from a sympathetic ear and I now have an appointment to meet her next Tuesday. So thank you all for the advice and to the person who pm’d me. Things feel like they are moving in a good direction and this alone is helping my sanity and stress levels.

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Just thought I’d update where I’m at now and to ask another question.

I saw my MS Nurse this week past and I must say it was so reassuring. It was good to talk with someone who understands everything and knows what can be done about it. She is putting me in touch with some other people who can help and things are starting to look brighter.

A few days after seeing her I received a copy of a letter she sent to my GP explaining our meeting and she also said that after a discussion with my specialist the GP should should prescribe pregabalin 50mg twice a day.

I have searched this site for information on pregabablin and there is a huge amount. I tried trawling through some of it but it is a bit specific to an individual so I was wondering if anybody has any general advice on whether this is good or bad thing plus anything else you can offer.

Looking at pregabalin on the web one of things it says you should mention to the chemist is if you’ve ever suffered with angioedemas. I did have these, quite a few in fact although none for over 12 months now. I do still suffer a little associated urticaria and I do use anti-histamines for that and I have fexofenadine 180mg on stand by in case of another angioedema. Anyone else ever experienced this?

Cheers