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I was diagnosed with PPMS and now after YEARS with this disease- sending me to get re-diagnosed!!

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GrammyApril
GrammyApril

I was diagnosed with Primary Progressive Multiple Sclerosis in 2008. Since then I have progressed rapidly and am now unable to walk (have a custom wheelchair) and I'm bedridden.

The doctor that I had been seeing since the very beginning passed away suddenly. So all the patients got scattered and divided between his offices colleagues.

I was at first very happy with the primary doctor that I ended up with. He kept with the same medications and stuff that my original doctor had me on and everything was going fine until I got a new occupational therapist and she "questioned" my decision not to attend the "MS Clinic" for outpatient therapys. Even though I can't walk (been in a wheelchair since 2012) and am now bedridden - she wanted me to go to the clinic for physical therapy stating that she wanted me to "try to start walking more" ???! (even though I can hardly stand up by myself for more than a minute and need to be held up by someone else and have no control over my legs anymore! haven't for years!). She started saying how she wanted me to go to the programs they offered for support etc.. However, my husband (who's my primary caregiver) and I had decided years ago that that wasn't what we wanted as part of my 'care'. I feel I have enough "support" as things are now. Another reason is because I can't "sit" anymore on my buttocks. My coccyx and sacrum are incredibly painful!! Even with the most expensive and advanced cushions, sitting for longer than a few minutes has me in such intense pain that it takes me a few days to recover! I have something called Coccydynia. Patients (like myself, of course) suffering with coccydynia often report severe and persistent pain that compromises functional activities requiring sitting and diminishes quality of life. Once the coccyx pain has become chronic (as mine is) it's more likely to continue indefinitely! Most patients require a multimodal treatment approach for the severe pain! Traditionally oral medications combined with local injections (unfortunately, over time the injections have been deemed useless/pointless as they no longer provided me any pain relief..and that is where I am at now, sadly).

Anyway, she made a stink to my newer doctor and even went so far as to question my MS diagnosis!! Telling him that ALL MS PATIENTS go to the MS Clinic! So she's questioning why I'm "really not wanting to go?" (obviously our reasons were not good enough for her and the care plan that we've decided on with my previous occupational therapist and my doctor who passed away, also don't fit into her ideas of how I should be living my life). The frustration of her being an OT that admittedly doesn't have any other Primary Progressive Multiple Sclerosis patients is baffling to us too! She is supposed to help me maintain a comfortable quality of life...not upend our lives with her personal thoughts and opinions. But....now she's 'stirred the pot' (so to speak) and talked with my new doctor and because he doesn't specialize or know much about dealing with PPMS patients, he's decided to send me to a totally new neurologist (that knows absolutely nothing about my journey) and he wants the new neurologist to "re-diagnosis me".

I'm seriously in shock that it's come to this after all of the years that I've suffered with this disease and all the years prior that it took to even finally get diagnosed!!! (anyone with PPMS knows how excruciatingly long and painful that process is)

I'm on a lot of pain medication for my pain as well as a high dose of Baclofen for my leg spasticity. It's terrifying to think of them changing out my medication when we'd finally found a cocktail that works for me! And the thought of going through all of this is so overwhelming.

Has this happened to anyone else? Have you ever had to be re-diagnosed? Has anyone gone through the process of changing doctors after years and years with your old doctor?

I'm really going crazy thinking about my upcoming appointment (January 12th)

Any advice at all would be greatly appreciated!!

Thanks for your time!!

0 likes, 3 replies

3 Replies

  • drew12
    drew12 GrammyApril

    Posted

    No advice to offer. I wish you well at your appointment, however, and hope that common sense prevails
  • Treated
    Treated GrammyApril

    Posted

    I would question with the OT what experience she has with PPMS? Ask for a 2nd opinion from another OT. I do know with all the cuts (uk) they have been looking at patients doing more for them self thus reducing care packages. No doubt you will have a long wait to see a neurologist, so in that time they any cost with care. By the sound of what your saying you don't have a care package so I would concentrate on asking for another OT. To be fair I think it's good that your symptoms are being relooked at as so many patients are left to cope without any input for many years. Although I can feel for you if you have settled and come to terms with being bed bound after all these years.

    Either way assert your rights to 2nd opinion with OT

  • steven12310
    steven12310 GrammyApril

    Posted

    Hi Grammy

    I have had PPMS for 17 years so I understand well what you are going through, firstly I have never attended any MS clinics as I have little faith in their knowledge of MS as they mostly deal with RRMS and a friend of mine was told she was imagining the pain she had and that it was all in her head. I have not seen a neurologist for several years now as he too stated that since they could do nothing for me I was wasting their time attending any appointments.

    The first thing you need to do is to inform her to stop harassing you and your doctor and you cannot be forced to go to any clinic or neurologist.

    I would also advise you to google LDN and get onto low dose naltraxone as soon as you can as this will ease many of your symptoms

    In addition if you are bedridden get off the baclofen as this rarely helps anyway and ask your doctor for the new drug that is now out for PPMS patients ( I cant remember the name) as this will definitely help with walking. If you leave it too late then the leg muscles will waste very quickly and that will be that.

    I was at the stage of being bedridden when I started taking LDN and that was 9 years ago and I am still able to shuffle around on my two pins although I do fall over a lot LOL

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