Help needed

[Frost111]

Hi everyone,

I've been lurking this forum for some time and thought I'd share my story.

I am a 35 year old male; around 5 years ago I noticed muscle loss in my quadriceps and neck. I was worried and saw a neurologist. Various tests have been done.

MRIs - All came back normal.

EMGs - All came back normal (this led me to realise the problem is muscular and not nerves).

Extensive blood work including all the markers for myocytis - All came back normal.

My current situation is I continue to loose muscle in neck and quadriceps. Cycling is difficult and when I climb lots of stairs or do too much cardiovascular exercise my quadriceps sometimes cramp up.

The next time I see my neurologist I know he will recommend a muscle biopsy which I am reluctant to do as I heard it can be quite painful.

The only positive to all of this is whatever I have it is slow acting. I'm getting worse but it's at a slow pace at least.

From all the treatments I've researched I could take methotrexate or get plasma infusions. Apart from that I was thinking as I am male I could consider anabolic steroids to increase muscle mass which which buy me some more time.

Any thoughts about what is going on with me?

Many thanks for reading.

[SoonToBe]

Pain in muscle biopsies is low it also depends on your pain threshold. There is none in the procedure it’s just in the recovery. If the EMG was run and interpreted well it can suggest which muscle issue maybe present. Have you requested being tested of the late onset muscular dystrophy (genetic blood test are used) - this would not appear any test you had done other than in the EMG. Unfortunately if it is one of the MD variations there are no treatments. I have both late onset MD and anti-SRP NAM and my onset, whilst later in life, sound similar-very slowly

[Frost111 in reply to SoonToBe]

Thanks for your reply. What conditions could show up in a muscle biopsy that would not show up on other tests?

I might try a combination of methotrexate and anabolic steroids, suppose I've got nothing to lose. I will continue to do light exercise as I've read it's important to keep the muscles active for as long as possible.

[SoonToBe in reply to Frost111]

It shows the state of the muscles and can help diagnosis many muscle issues. After taking the biopsy multiple different stains are used to stain small section of the sample. How these stain the muscle are use to determine whether and if any muscle issues exist. Different muscle issues show up differently. I’d avoid taking anything without a clear diagnosis-for me even after diagnosis methotrexate did nothing, and anabolic steroids can have nasty side effects (and can be illegal)

[RooHudson]

Hi there.

Different scenario but here’s my experience. I’ve an autoimmune disease called Dermatomyositis where my immune system attacks my blood vessels and muscles causing extreme pain and weakness.

I was firstly put on steroids and then moved to methotrexate…..it wasn’t nice. Tried the oral tablets first but not enough was getting in my blood stream and I was still unwell. Then they tried weekly injections to which I have really bad side effects such as sickness, dizziness and would be unwell for a few days after injecting.

I’m now on a mycophenolate and had two immunoglobulin infusions a year ago which have been a game changer. No side effects and I’m back at the gym and living a relatively normal life.

My experience with methotrexate wasn’t good and neither has anyone else whose been on this medication.

Good luck

[Frost111 in reply to RooHudson]

How did they prescribe immunogloblin infusions? When I spoke to my neurologist about this he didn't seem interested in entertaining the idea. Thanks for sharing your story.

[JohnofWsM]

The consultant who I was under at Bristol Southmead Hospital stated in the letter (2018) following my muscle biopsy that "I may well turn out to have a mild form of Inclusion Body Myositis but the presentation is not completely typical for this. He has some myopathic changes on the biopsy." The fact that I have no inflammatory issues (low CK level) and luckily no pain means it would be a very rare version. I have deteriorated slowly since then and am very close to being wheelchair bound. Strength in hands and arms is also deteriorating.

Regarding the muscle biopsy the only bit that hurt slightly was the initial injections of anaesthetic. You do get a slight sensation of something pulling at your leg when they are tugging the muscle sample out, but no pain. Wasn't really sore afterwards which was surprising. Go for it as it might get you a conclusive answer and that is worth a lot.

[Myperu20 in reply to JohnofWsM]

hello i have just been diagnosed with sporadic IBM after 2 years of waiting and tests, difficulty going up stairs and getting put of chairs but can walk. Had it took you 6 years to arrive at being wheel chair bound, zJust trying to get my head around it and plan for future, thanks

[Frost111 in reply to JohnofWsM]

Thank you for sharing. Are you on any treatments at all to slow it down?

[JohnofWsM in reply to Frost111]

As I have a rare non-inflammatory type there is nothing to treat. I feel fine apart from being more tired (being 73 could have something to do with that)

[Pebs14]

They numb the area where they take the muscle from, it doesn’t hurt, doesn’t hurt after either. I watched mine being done. You really should have it done before taking any medication!! You could be doing more damage to your body.