Feeling very lost and alone.

[eescvc]

Hi,

Diagnosed Lupus Jan 2018. Positive ANA, dsDNA, Rheumatoid Factor, Ro52, Mi2b, anti cardiolipin numerous tests over the past 20 months)

I was given an urgent referral to neurology (6 weeks ago now - doesn't seem very urgent) after worsening muscle weakness. My physio did muscle strength test, wasn't happy with the results. The next day I had a phonecall from rheumatology asking for me to go in as an emergency appointment the following week day. I did and they admitted me to hospital for 4 days for steroid infusions and further investigations. My CK levels are normal in bloods and have always been. Previous MRI of thighs normal. They discharged me when steroids had a minor positive affect on me.

Since then I've been up and down, but mainly much much worse. My GP had to sign me off work for the rest of July as I could barely mobilise from weakness. She also tried to expedite my Neurology appointment. I've had numerous tests but still waiting for my appointment and results.

I'm currently waiting on results for a muscle biopsy (4 weeks ago), MRI (3 weeks ago) and EMG test (1 week ago).

I have my next Rheumatology appointment 16th September but I probably won't even get to see my consultant as it's always someone new each time. Combined with strange situation with my previously always positive ANA being negative (after 3 days of steroid infusions - not sure if this could be reason) but it seems they're wanting to change my "definite" (as written my my consultant) Lupus to Fibro according to a letter to my GP from someone who treated me during hospital stay (not my consultant).

I'm just feeling like I've been forgotten about and that if there's no conclusion from all these tests, and they take my Lupus diagnosis away I'm going to essentially be bed bound on and off aged 26 with no explanation and no help offered. What do I do. I'm feeling very anxious and don't know if I can wait another month for answers in this state.

[Lisalou19]

This is a worrying time for you.

I think with the level of tests you’ve had done you are being taken very seriously and they see a real reason for concern.

I think that just because you’ve had 1 negative result after steroid infusion will not change the diagnosis .

How is your strength now?

You could see if there’s a contact number for a nurse at your rheumatology department and speak with them to see if there are any results.

One thing I find highly frustrating is that no one rings you with results, you receive letters with all terminology that makes no sense and then go to your next appointment and they say something different 😳

X

[eescvc in reply to Lisalou19]

Thanks, I was feeling a bit sorry for myself earlier when I wrote this! I have a number for the rheumatology advice line, I guess I could call them and ask if they have any results, I hadn't thought of that. The main problem is waiting for my neurology appointment as it's been so long now I'm worried it's been forgotten somehow haha! You're right they are definitely taking things seriously, I just feel a bit lost. I'm still quite weak and immobile. Better than when I was bed bound, but just as bad as when I was first admitted. It fluctuates a lot.

[Lisalou19 in reply to eescvc]

It is ok to feel sorry for yourself . You have a lot to worry about and lots of outstanding test results.

Definitely give the nurse a call. Check for results and maybe see if they have an earlier appointment for you,

I think the fluctuations in symptoms is also difficult to deal with because you never know what each day will bring you .

Do let me know how you get on, try to relax a little as your in good hands

X