having mri

[50guy]

good evening

Booked in for mri scan of all my limbs next week, Bloods were normal. Excersising 4 times a week but over last to years have struggled with stamina when excersising and tire so easily. Noticed 10 years ago when walking up a flight of stairs my thighs would feel heavy also when cycling up hill had to get off as power in thighs seemed to drain really quick.

muscles always feel tender and tight , even when doing nothing.

Has any one had similar symptoms before getting diagnosed with some form myotsis.

Regards A

[SoonToBe]

Yes and for me it is a complex situation - I was eventually diagnosed with both anti-srp necrotizing myositis (auto-immune issue) and a late onset rare form of muscular dystophy (myofibrillar myositis type 4 (genetic issue). I, like you, probably noticed it first whist cycling, slowly progressing to the point where stairs are impossible. MRi shows muscle loss and fat replacement and muscle biopsy showed myositis induced changes

[50guy in reply to SoonToBe]

Hi there , thanks for replying

Do you suffer from really bad fatigue ? Also when cycling uphill power just drained then would get off bike , could get back on and 10 secs later it would happen again. Legs always feel tired when walking upstairs ( even though I gym 4 times a week. Sometimes I can excersise but muscles feel like it's the first time I've done it. All antibodies test have come back normal. Only abnormality is high IgA.

Would you describe a bit more how it made you feel .

Thanks A

[SoonToBe in reply to 50guy]

Yes I first noticed issue when cycling-I found I lose energy half way up hills but after walking to top I could continue to cycle with no issues. Over time walking up stairs and slopes became impossible (currently use stair lift at home). Mobility is slowly going and fatigue is always high even without did much. No longer cycling 6 years ago I was doing 100mile events!

[50guy in reply to SoonToBe]

Thanks for your reply,

My muscles especially back and calf muscles feel so tight when I stretch them out , no matter how many times I stretch

Get led cramps in hamstring after 10 mins of cycling.

Can lift weights lightly, but never seem to be able to progress with any extra weight.

Regards

A

[SoonToBe]

Never suffered cramps (recently aches have become an issue) but back has been an issue for sometime - could be due to calf/thighs/glutes being weaken more on the right than the left (always seen more impact on right then left). This leads to lopsided gate. Currently have to use ankle foot orthotic on right leg to control foot drop (due to impact of MD on calf and ankle). Also starting to see upper body impact. MRi shows about 50% of thigh muscles are gone (now replaced with fat).

[50guy in reply to SoonToBe]

Hi , have had myositis panel test , all came back ok. Did u experience tight calf muscles, try stretching but they never feel relaxed.

Also did u have any unusual symptoms

[50guy]

hi thanks for all this info.

F

[SoonToBe]

I did not have any unusual symptoms, but I was doing a lot of stretching-mainly had fatigue and weakness. Aches and pains only came late in illness progress (after loss of a lot of muscle). Consultant thinks main driver in my case is the muscular dystrophy which requires a genetic test to confirm (think there is a panel for it). This is added to by the immune driven NAM. Like I said I’m positive in myositis panel and positive for MFM type 4 genetic defect