No Man Land Without a Shield! Any thoughts please

[spiceyandsugar]

Hi All

So I saw Dr Griffiths who was lovely & looked like we had pinned my varied symptoms down to polymyositis. Two raised CKs (1350) 4 wks apart. No different physical activity during that time. 3rd CK at time if MRI was only slight raised at 207. Nothing shown on thigh mri!! So been sent home with fibromyalgia except I can barely walk far at all! She said polymyositis not likely in behcets & as for lupus I had no ANA. Unlikely ck would drop if it's polymyositis. Any ideas anyone please? I'm considering getting a wheel chair as I can't get very far without bench rest. As I end up too distressed by pain & fatigue. Plus it actually feels like I've already walked 10mile & on last legs. I'm not sure that's a typical fibromyalgia thing?

Thanks for your help xxxx

[Renu]

Hi,

I too have polymyositis and SLE. My CK was significantly raised too. My Consultant said he would do a thigh biopsy to diagnose, irrespective of whether or not it showed up in the MRI (which it did not!). The biopsy confirmed polymyositis. No one could argue with that. A bit worrying that the MRI didn't reveal it though!!! Just goes to show....Good luck, hope you get the help you need. Maybe you could discuss a thigh muscle biopsy with your Dr, if they feel that is necessary?

Renu

[spiceyandsugar in reply to Renu]

Thankyou for your reply, I was baffled she didn't do the biopsy. I truly struggle walking. I'll see if my gp can write her to ask since I never explained how bad my walking was xxx

[jewel8888]

Hi there, i have drug induced sle and know wht you re saying about how hard it is walking. It hould get better for you when you get medications adjusted. I feel for you, i recently have gotten strength back i had really started to think i couldnt. Resist the wheelchair if possible. Do you have support rom family to hel0 you? I used a cane for two years and only need it sometimes now. I will keep you in my prayers that you get well and get stronger each day. I almost forgot, i tried Otezla a few months after my big ordeal and it made me go thru parslysis episodes so be careful and research on your own before decisions are made.

My sincere wishes, Julie

[spiceyandsugar in reply to jewel8888]

Thankyou, I was told today I need a stick due to vertigo so will help with walking also I guess. Don't get much support my family are an hour away. My husband all. spent looking after our toddler plus working. Was told at Tribunal my problems are not as severe as I say. I saw a 90yr old on Tv with a walker who

Walked better than me! Thankyou for your kind words xxx

[jewel8888 in reply to spiceyandsugar]

was thinking about you and hoping you are a bit better. My labs are negative for sale and ra, but Dr says I have it. My walking had started too bad prior to neck surgery but got extremely worse a few months after i had the surgery. I think bad bacj, humira and lingering bladder infection were the culprits. I had wanted a wheelchair but drs were right i gained it back. still get leg weakness but able to walk again without the cane, still brin it case. My prayers for you, Julie

[spiceyandsugar]

Thank you