Update..

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Neverending
Neverending Member Posts: 11
edited 28. Nov 2023, 14:04 in Living with arthritis
Hello again... Well the days go bye for me quickly and I am still home trying to keep my active brain under control. I did a stupid thing on Sunday and decided to try to refit some cctv cameras onto our bungalow. Only two rings on the ladder up, three small screws x 4 cameras.. total time with my wife helping incase my knees gave way on ladder 30 mins.... I used to lay 20 Sqm floors of tiles in 8 hrs ( those were the days ).. The fitting of the cameras totally wiped me out, I could not move to what I can only say was the worse fatigue Ihave ever had... My legs... well due to this as yet undiagnosed condition, I could hardly lift them... We live and learn I guess.. back on the chair.... Monday.. I had a message from the Neurologist, it seems my leg issue is muscular ( EMG Results came in )..... I think this is important to all on this site, I for one have RA, the muscle disease I think is responsible ( based on research by myself ) not medically trained, google trained is IBM... another auto immune disease related to RA.... I understand self diagnosis is bad but as the doctors have no idea until the results come in that I see anyway I can make a best guess just as they do...

Next step... Tuesday I’m off to rheumatology in the local hospital.. now! In my area we are 2 consultants short, they advertised, not luck.... If you fancy your chances send your cv in ASAP... We need you urgently.... anyway, I think I’ll have to have a biopsy of the leg muscle next, it helps with the puzzle I am told.. If your interested I’ll keep you posted next week....

Oh ! Well... more TV.... bye

Comments

  • stickywicket
    stickywicket Member Posts: 27,713
    edited 30. Nov -1, 00:00
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    Really, what you did wasn't all that stupid because you're still learning your limits. I've had RA for many years and I still test my limits or just ignore them. Now THAT is stupid but, I guess, a little bit of 'more normal' is essential from time to time.

    I've never heard of IBM. IBS, yes. That's another autoimmune disease which affects the bowels but the legs / muscles? That's a new one on me.

    Doc Google is a bit of a charlatan. Stick with responsible sites such as NHS. And remember that anything you read on forums - even on here - is simply anecdotal. It might be true or it might not. The truly reliable info is on the top menu. The rest is simply our understanding (or misunderstanding) and beliefs.

    Anyway, best of luck with the appointment and please do update us. Far more people actually read these posts than contribute so you could be helping someone else.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Neverending
    Neverending Member Posts: 11
    edited 30. Nov -1, 00:00
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    Hi again... sorry IBM... Inclusion body myopathy... muscle disease.. Just to add something regarding diagnosis... The text I had from my neurologist last night said... “ The rests you had did show a problem with the muscles at the top of your legs, I am now referring you to your rheumatology dept”.... I wrote my notes on here this morning as an update... I then get an email from the same neurologist 30 mins later “ your case is not clear it is an unusual problem, you may need further rheumatology tests.. if these are inconclusive it could be your rheumatology meds” ... You could not make this up.. If I treated my customers like this in the construction industry... xyz... I discussed my Cimzea meds for my RA with homecare pharmacy twice in the last month. They stated that there are no known reports of Cimzea causing muscle weakness... So now,we’ll, they still have no idea of what’s going on... so what do we know?
    I know I have seen 2 consultants who have no idea what’s going on.. I know I will see another on Tuesday who will also have no idea... I did read from via the moderator on this site I can have weakness from RA.. I think it will be “ we will put you on steroids”
    I don’t think I want steroids. Might it be better to just accept my situation and move on?. Is there a case for this? Have you done this ?

    What I am finding so frustrating is that I have just turned 59, I cannot at the moment continue with my manual job.. I have no income, I can’t get monitory help as my situation dictates I am not entitled.. sorry.... waffling.. so many things to decide... sell van? Or can my illness be cured... look for a new sitting down job? At my age, fat chance.

    Ok, I am alive, I want to get out and about but I can’t manage on crutches I get so tired very quickly. I am going to try the PIP route after 20th feb as that’s 3 months since I became wobbly :(

    I have my van but my lovely wife doesn’t want me driving as it worries her my leg won’t work and push the brake, that’s never happened but I see her point.

    As you can see I am in a pickle, Should I just accept my leg weakness and get on or let them experiment with drugs..I have lost all faith in NHS....

    To finish...It was bad enough getting my RA diagnosed as I don’t really swell up on my joints and I am negative on inflammation factor.. My foot and hand scans finally proved to me after many years it was there.. I went through the usual methotrexate, hydoxichloriquine and others before the Cimzea put a hold on progression, the methotrexate caused liver probs so no go for me.. It does prove though we all are guinepigs with these diseases.We all take the drugs and tell others our results good and bad... One thingI hate is itching, drives me mad, so antihistamine is taken to help.. I thought I had fleas when it first started years ago ha ha...

    Anyway, excuse the grammar and spelling..

    Thanks Sticky for the reply.. If anyone wants to chat feel free I can only watch so much Netflix... bye. Ian
  • stickywicket
    stickywicket Member Posts: 27,713
    edited 30. Nov -1, 00:00
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    You're absolutely right about being in a pickle. It must be so scary, annoying, frustrating and lots more besides. I think we all cope better with the unpalatable truth than with uncertainty and doubts.

    Unfortunately, you don't seem to fit neatly into a standard pattern so it's no wonder diagnosis is difficult. I checked out Inclusion Body Myopathy but isn't it more a disease that comes in adolescence or early adulthood? Inclusion Body Myestosis was mentioned too and, as that seems to affect older people, and as I read about it on a reliable site, I pass on the link.
    https://www.mda.org/disease/inclusion-body-myositis

    I also checked our cimzia side effects on another reliable site. https://www.drugs.com/sfx/cimzia-side-effects.html . Muscle weakness seems uncommon but not unheard of. The trouble is so much of what you have is uncommon but not unheard of. RA is usually, but not always, sero-positive. I've not heard of it causing itching before. The sort of muscle weakness you describe I've only experienced once, quite recently, when I came off steroids too quickly. And it was my arms not my legs.

    In your situation I'd be wanting to see my rheumatologist again asap. Meanwhile I'd be down at the GP's surgery as, even though they will have none of the specialists' expertise, they will understand the anxiety generated and, I've always found, be helpful in talking things over.I usually come out with a clearer understanding.

    I'm sorry, I wish I could help more.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Neverending
    Neverending Member Posts: 11
    edited 30. Nov -1, 00:00
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    Thank you very much Stickywicket for the help and assistance... regards.. ian :)
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