Head in a spin

Just seen the neurologist today as has seen one previously who said I had neurological signs of developing MS. Today the consultant I saw said that it is unlikely this is the case and he cannot be sure until my RA is under control.

The RA consultant last week had said that he would not put me on medication for the RA until I got the optic neuritis and other symptoms under control and that I had to wait to see the neurologist. Now I am very confused, as you can well imagine.

The neurologist has said that he will write the the RA consultant to ask them to put me on Retuximab as I have tried, sulphasalasine and methotrexate (in both forms) and had bad side effects from both. I was to try Hydroxichloriquine but never started this medication due to having 4 bouts of ON over the last 3 months. Having looked up Retuxibam it says I cannot take this as being sero-negative.

Having now been on no medication for coming up to a year and showing signs of erosion in hands and feet I am getting a little fed up as no one seems to want to take charge of my treatment. I's sure everyone else understands how frustrating it is to be in pain every day, it is now 2.5 years since diagnosis and have not had any success as yet, and I know I am not coping well at the moment due to the damage and partial loss of vision which I have been told by the ophthalmologist is now likely to be permanent. I feel a bit like a mushroom; left in the dark (you know the rest). Have even tried my own Gp who gave me pain killers (which I only take on the really bad days as dont want to become dependant) and they advised that I wait for the consultants to make the decision.

I do ask questions but dont seem to get answers (not ones that tell me what treatment to expect anyway) and sometimes feel that I am a bit of an inconvenience even attending as they always seem to be wanting to rush me out the door as the clinics are always running late.

Sorry for the long rant, but it does help to share even if no one can give advice, just very frustrated right now and the 2 hours sleep a night is not helping.

Hope you are all having a much better day.

Ruth

10 Replies

oldestnewest
  • Hi Ruth,

    so sorry that you seem to be stuck in the middle of two consultants giving conflicting advice. We do hear this a lot from people who have more than one condition. Why the consultants don't seem able to speak to one another and formulate a joined up approach is a mystery sometimes. Hopefully when your neurologist contacts your rheumatologist things will start to get moving. Fingers crossed,

    Beverley (NRAS Helpline)

  • thanks Beverley,

    :)

  • That's disgraceful! How awful for you. In your position I would write to the PALS at your hospital and complain about being passed from person to person. Being left that long without treatment is just so irresponsible.

  • Gosh you have had a lot to deal with, it sounds really difficult and very distressing. You have my sympathy and I hope that something is sorted out very soon.

  • Sending you my love and gentle hugs. I had optic neurits back in 1991. I am not a doctor, I sell beer for a living, but in 1991 I was sent to a neuropthalmologist. Why have they only sent you to a opthalmologist? My vision came back slowly over a 2 to 3 month period.

    MS is a scary disease. I was also informed that not all optic neuritis is MS, although it usually is one of the first symptoms. I had 3 bouts of MS attacks within a 9 year period and it went into remission by itself. I have what is called benign MS.

    What I'm trying to say is although MS is scary, not everyone has the aggressive form. When I had MS there where no drugs available to treat it. Now there are.

    I now have RA and I hope it too will go into remission. I mean both MS and RA are caused by imflamation gone wild.

    Take care and if you want someone to talk to please feel free to write me.

    Hugs to you

    Sue

  • thanks Sue,

    I have had four bouts of Optic Neuritis since September (seems to occur every 3 weeks) and each time there are gaps in my vision field, the steroids do help somewhat in vision returning a bit quicker. I am hoping that it will all come back, although I have been warned it may not and know it may be slow going.

    I think the problem is the uncertainty, I just want someone to say "this is what you have, and here is what we are doing about it" but unfortunately this does not seem to be what is happening. I feel a bit in limbo and its not really reassuring that one neurologist said that I had classic symptoms of MS; falls, poor reflex testing, optic neuritis etc. and the one I saw yesterday said that he doubted it was (didnt do any tests or read my notes as he was running late) and that he thought if we treated the RA it would stop everything else too.

    Am going to a major hospital tomorrow for a second opinion and hubby is coming with as I think he is a bit fed up of my lack of treatment and wants to put in his pennyworth to get things moving. :)

    Fingers crossed I might get answers (being optomistic) lol

    Ruth

  • The hospitol that you are going to will run you through a lot of tests. I think it is very wise of you to have your husband come along. It's always good to have another person with you when dealing with medical conditions.

    I hope they schedule you for a MRI to see if you have any MS lesions.

    The sooner you know what is going on with your body, the faster the treatment starts.

    By the way, they did find one MS lesion on my brain stem (1.5 cm). I remember being so scared...25 years later I am fine.

    Sending you my love

    Sue

  • Had my appointment at different hospital today and must say the contrast between the 2 was extremely different.

    Came out much more positive and felt they had really listened to me. I was there for 5 hours; and although there was a bit of waiting they were extremely thorough. Both consultants I saw spent the time to read my notes and checked the facts with me😀

    Had blood tests, X-rays and a lot of tests on my eyes; more tests such as contrast Mri; lumbar puncture etc to come and s referral to a neurologist who specialises in my type of problem.

    Consultant was very upset that no one is monitoring my bloods as I have signs of pre-diabetes and has said she is writing a strongly worded letter to my gp; so here's hoping they will get on board.

    They haven't guaranteed that they can give me a definitive answer as to what my diagnosis is but at least they have said straight out they right now they have no idea what it is as my case is complicated.

    In all a good day; when it works well the nhs can give exceptional treatment 😌

  • Wow what a difference a second medical opinion could be!!

    You should have the results of your test soon. Isn't it a wonderful feeling knowing that you are now in the good hands of a doctor that listens and cares? I'm hopeful they will figure out what is wrong with you, instead of "brushing" you off.

    So happy for you :)

    Please keep intouch

    Sue

  • Thank you Sue,

    And yes it is such a difference, them even admitting they don't know what it is yet helped.

    I definitely feel more positive that something is happening and it will get treated one way or another 😀

You may also like...