Update On My Situation - Just Had EMG

[Carys]

No worries. It was kind of you to try.

[darkside4k]

Hey everyone - I thought I would come back and provide another update for anyone following this thread.

As suggested by the Rheumatologist, I had the muscle biopsy last week. On Monday (two days ago) I went for the follow-up and to get the results. The biopsy did not show any signs of muscular dystrophy or any other pathological disease. However, the doctor called the pathologist because the pathologist noted some non-specific changes in the muscles. The pathologist (who apparently is pretty pro at muscle biopsy readings) said they didn't see any signs of "disease" but that some things looked like I may have a CPTII deficiency, which is a muscle enzyme deficiency and is basically a birth defect. Basically your body has trouble converting fatty acids for your muscles - or can't do it at all. The pathologist thought this was a "possibility" but did not see signs of anything else going on.

So, that's basically it. I have no more tests scheduled at this time and just follow up with the Rheumatologist in four months so they can do some bloodwork and monitor my CK levels to see if they see any muscle breakdown.

So, they have basically ruled out muscular dystrophy. I have had a normal EMG to check for other nerve related issues like ALS or whatever else that can detect. I have had various bloodwork done to check for various things. I have had my thyroid levels checked. I have had a Lyme disease test performed.

I still have muscle pains in my legs that I did not use to have so I do still believe there is *something* wrong with me but at this point going forward I'm not sure what else there is to do. I think if my symptoms progress or I start seeing new symptoms I will definitely press my primary care doctor to investigate something like MS but I don't think he would really want to do that right now and I would feel stupid pressing for it at this point because I've already gone through so many tests.

I may have a full thyroid panel done by a local lab. I only had my TSH checked which was 2.8 and within range, but it was 0.8 higher than it was about 2 years ago when I had it checked for something else unrelated.

I guess my main fear is I have some serious disease that we are just not finding. Obviously it doesn't get much more serious than ALS and we *seem* to have ruled that out with the EMG and also just the fact that I have still (after 3 months of this) never actually had any clinical weakness where my muscles can't do something or I can't grab something, etc. I can still walk on toes and on heels. I can still squat down and back up. I can still do all of my normal life stuff my leg muscles just feel tired and achey. I take a vitamin every day. I dunno what else to do.

Part of me still fears ALS but I know I just don't have very many classic signs of that (at least not yet). I think MS is something worth at least checking since it can be done with a non-invasive MRI but personally I will probably just wait and see if symptoms progress or change before trying to get that done.

Of course there are also other sorta less professionally recognized disorders like Fibromyalgia or BFS that could be considered but I don't think any of my doctors really deal or even recognize those issues very much.

[pulisa]

I'm sure that if you have enough tests you will eventually get diagnosed with an incidentaloma or two but I expect you will concentrate on the "CPTII deficiency" and pathologise that into something sinister.

[nomorepanic]

Are you going to treat the HA now you have a clean bill of health?

[Carys]

I'm sure that if you have enough tests you will eventually get diagnosed with an incidentaloma or two but I expect you will concentrate on the "CPTII deficiency" and pathologise that into something sinister.

I read your account and found it tragic, quite pathetic, Darkside, your absolute belief that you have physical illness and year on year on year you have nothing found. What a waste of a life.

I believe you are going to search your whole life, and be tested forever more, judging by the post you have put above. There is, yet again, nothing wrong with you....not a thing. The medics around you seem to indulge your HA constantly, so whilst that happens and nobody will put their foot down with you, this will continue indefinitely.....test after test after test (infact you even talk here of another thyroid test!)

[darkside4k]

I'm still having a feeling of muscle tightness and fatigue even today in my right shin area. I wish they would have biopsied that area to be honest but I have also had pain at various times in the left thigh they did biopsy.

But, I don't know what else to do. I could go to another doctor and ask their opinion but I don't know if that's crazy or not. I don't want to just be a doctor chaser. Has anyone else ever dealt with persistent muscle tightness in the legs (both), muscle fatigue (no weakness), that lasted for months and did it eventually go away with no explanation?

[BlueIris]

Y'know, sometimes people just get aches and pains. They hang around for a while and then they go away.

[AntsyVee]

And people who are worried they are dying all the time get a lot of ache and pains because they have so much tension from being worried...

[Carys]

I don't want to just be a doctor chaser.

I hate to break the news to you, the obvious news, that you already are - and have been for years.

[darkside4k]

Ugh, muscles are very sore and stiff today particularly my right shin which has been the problem area from the beginning. I don't get it. I didn't work out or anything yesterday. It's so frustrating. I really think I may have to get a second opinion from another doctor.

To be honest I fear that ALS could not be ruled out because we tested early before I'm showing the full signs on EMG and that is why my EMG was clean.