Hi - newly diagnosed looking for advice

Toomanykids

Hi - hoping to pick the brains of those already on this crazy path - little back history - I already have MS - now thanks to my GOOD side having to do all the work - I’ve now been diagnosed with arthritis in my good knee - GP didn’t explain anymore than this - said it could be linked to my psoriasis or rheumatoid or osteo arthritis 🤷‍♀️- doesn’t really help me much tbh - prescribed Naproxen- great but that’s triggered my asthma ( yep my immune system does like to attack me ) - so now I’m waiting someone - anyone - to call me back with what next - currently I can’t walk / drive /sleep - or even get on or off the toilet without someone to help me - I’m kinda fed up - I usually walk everyday to build up and move my MS affected side - so that’s going to stiffen - I need to be moving - What should I be asking for ?? ( I’m used to researching and demanding things with the MS so I understand I need to be a squeaky wheel to get the oil - I’m at a loss what to ask for - so I can moving first off - then longer term - how do I manage this ??

Poppyjane

Hello @Toomanykids welcome to the online community

You have been diagnosed with arthritis in your good knee and prescribed Naproxen which has affected your asthma, also alongside this you are struggling with MS, PsA and at the moment very little mobility. You did not feel your GP's explanation was very satisfactory and are now waiting for a call back.

You say that you are used to researching and demanding help for your MS and are wondering what questions to now be asking to help you "move " forward. I wonder if asking for a second opinion, either from someone in your GP's practice who is specialised in types of arthritis or asking for a referral to a Rheumatologist since you mention that your immune system is vulnerable.

I attach a link to Rheumatoid Arthritis for your information and one to the VA exercise programme which has some seated exercises from which you may be able to build back up to your former mobility levels.

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

https://www.versusarthritis.org/about-arthritis/exercising-with-arthritis/lets-move-with-leon/

Look at Session 3 which has an example of seated alternatives. There are other VA exercise videos which are all used by our members, it is just a question of finding the one that suits you best.

We are glad you found us and are here to support you whilst you continue along "the crazy path". Do keep in touch and let us know how you are getting on.

Take care

Poppyjane

stickywicket

Please forgive a very short, abrupt post. I'Vve had RA for over 60 years, OA for a little less and asthma as a child, resurrected by ibuprofen as an adult. Here'-s what I'd do:

1. In view of your psoriasis and other autoimmune issues, insist on a refereal to a rheumatologist. GPs can do a blood test to check for tje rjeumatoid factor but some autoimmune forms, notably PsA, are seronegative so, if your GP isn't clued up on tjat, they' kust think yours is OA.

2. Do the exercises. They've kept ,e going for years.

3. Ask ror an assessment by an Occupational Therapist. You can self-refer if you check Adult Social Care on your local council website.

4. ,eanwhile, check out disability equipment online. Some essential items are cheàp. Maybe a raised loo seat for a start?

stickywicket

P.S. Please excuse typos. I really am in a rush!

Also, if you get to see a rheumatologist they'll probably prescribe steroids which work lile a dream for most but don't get carried away. They're not a good lomg term solution. DMARDS will follow.

Toomanykids

Thankyou stickywicket

I was amazed at the “ oh it’s arthritis “ attitude of GP tbh

after watching my Nan and my mum become increasingly disabled because of it - I know what’s coming my way

having MS has been enough to cope with - I kinda hoped I would get more time or even avoid it altogether 😞

but sadly not

I remember rheumatologist saying to my mum that it’s a shame she didn’t get to start treatment earlier as they could have slowed it down - I remember her ANGRY reply - as she had fought for years to get support

I worry that I’m just going to endure the same battle she did 😞

until my fingers are fused to stop pain , and I’m back in a wheelchair- I worked hard to relearn how to walk 😞

I guess I’m just miffed right now - I KNOW that there are things they can do to help slow this - it’s the massive battle to get these things that frustrates me 😞

stickywicket

Have you actually been referred to a rheumatologist? With so many pointers - MS, psoriasis, asthma and a mother and grandmother with autoimmune arthritis - to me it's a no-brainer. If you've not been referred see another GP at the practice or just change practices. It's easy. Just go to the new one, preferably with a current prescription, and they dio the rest. Or you could try PALS. Or simply write a letter of complaint to your practice manager. Anything, basically, to make them get their rears into gear.

jamieA

Hi @Toomanykids

I agree with everything that @stickywicket has said above - particularly about speaking up. I'd also agree that having psoriasis should be a flag to the medics to look at PsA. According to what I've read about 30% of psoriasis sufferers go on to develop PsA. I don't think the normal blood tests the GP orders look at the factors that indicate the possibility of PsA. Also after my initial diagnosis of PsA I was given an MRI scan of my lower back and when I asked why the medics said the state of your sacroiliac joints are a pointer to PsA.