Muscular Dystrophy-like Symptoms

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Hi everyone again. Since late 2019, I've been getting muscle wasting issues which continue to steadily get worse, despite taking loads of foods, suppliments, proteins and meal replacements. More recently, I've been developing swollen calves that look huge and out of proportion with my worryingly thin legs. These seem to be continuing to get worse too.

I spoke to a medical student recently who thought that my symptoms sounded like Becker muscular dystrophy, given the swollen calf muscles (which are a hallmark symptom of this) and the age of onset. However, I've got no history of this in my family, making me still convinced that this is yet another health issue I've developed as a result of my mystery "Donnington Disease" condition. This seems to be progressing much more quickly than muscular dystrophy too I would say and I'm now just over 8 stone in weight now, heading towards the 7 stone mark soon I reckon.

My muscles are seriously weak too and I'm in agony straining them to lift objects that aren't that heavy, or to pull myself back up when I bend down for anything (since my legs are most affected with this). Much of my clothes too have became too big and slack for me to wear now because of my much my body has shrunk with this muscle wasting. Often when I sit on hard seats too, my lower pelvis bones hurt as I am sitting directly on them.

Does anyone here know of any conditions or illnesses that would result in these rapidly progressing muscular dystrophy-like symptoms I'm describing? Thanks. I really hope I can find some way to treat this as soon as I can. (as much as I've been saying that for years to no avail)
 

Treeman

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I have muscle decline, I assume mainly due to a reduction in use.

I gain weight easy, but I know there are some who lose weight just as easy.

As a first step I would speak to my GP, ask their opinion and probably a specialist after that.

Good luck.
 
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I have muscle decline, I assume mainly due to a reduction in use.

I gain weight easy, but I know there are some who lose weight just as easy.

As a first step I would speak to my GP, ask their opinion and probably a specialist after that.

Good luck.
Thanks Treeman. I'll see my GP once again to keep them updated on the situation, even though I've no longer got any faith in any of my own doctors.

Maybe if a doctor actually examined these legs though, they would realise how serious of an issue this is and do something.
 
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Could be excess phosphorus.

It may show up as elevated phosphorus in blood serum, but the body goes to great lengths to remove it.
Tests for PTH, FGF23, calcium, magnesium, and kidney function may show why.
Interesting read with these articles. I should mention that I also have all the symptoms of iron deficiency anemia too with this and feel like someone much older who smokes heavily, despite taking iron suppliments.

I'll do some more labs and will check these while I'm at it.
 

Zebra

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Hi, @SeanQHX1

I'm sorry this is happening to you.

I second the suggestion above, that is, suggest you see your GP, who *should* then refer you to a Neuromuscular Specialist.

In the meantime, if you Google "bilateral calf muscle hypertrophy" A LOT of journal articles pop up. Perhaps you'll find a case similar to your and you can arm yourself with that information before you head to the doctor.

Will you please keep us posted?
 

Methyl90

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Could be excess phosphorus.

It may show up as elevated phosphorus in blood serum, but the body goes to great lengths to remove it.
Tests for PTH, FGF23, calcium, magnesium, and kidney function may show why.

https://elifesciences.org/articles/74782

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5824959/
@Crux The excess of phosphorus (in which organs / tissues?) Through which mechanism, if directed, would it lead to muscle decline? Could a diet higher in calcium help?
 

Methyl90

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Hi, @SeanQHX1

I'm sorry this is happening to you.

I second the suggestion above, that is, suggest you see your GP, who *should* then refer you to a Neuromuscular Specialist.

In the meantime, if you Google "bilateral calf muscle hypertrophy" A LOT of journal articles pop up. Perhaps you'll find a case similar to your and you can arm yourself with that information before you head to the doctor.

Will you please keep us posted?
@Zebra I have exactly this, presumably since I was born, not just the calf, but the left side is more hypertrophic, exactly in the middle of the midline ... at first I thought that after 8 years of aggravating symptoms scar tissue had accumulated ( fibrosis) further to the left, but visibly the bones also seem "bigger" so I still have many doubts if it's just a muscle / collagen / cartilage difference.
 

Tammy

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I had muscle wasting during a severe period of my CFS and I got down to 93 lbs. I had really severe muscle weakness also. The muscle wasting finally started to improve and although I still have muscle weakness it is not as severe as it used to be.
 
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Methyl90

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I had muscle wasting during a period of my CFS and I got down to 93 lbs. I had really severe muscle weakness also. The muscle wasting finally started to improve and although I still have muscle weakness it is not as severe as it used to be.
How did you improve?
 

Tammy

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How did you improve?
I knew someone might ask and it would be difficult to give a simple answer. I've had CFS for 26 yrs so there are things I can't even remember from back then. The muscle wasting and severe muscle weakness eventually got better and I don't know if I was taking anything special back then to make it improve? I've tried so many different things over the years so I can't say for sure if these things just would have improved on their own or if it was in fact something I was taking? Too long ago to remember.
 

Crux

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@Crux The excess of phosphorus (in which organs / tissues?) Through which mechanism, if directed, would it lead to muscle decline? Could a diet higher in calcium help?
Calcium phosphate product can form almost anywhere in the body, we mostly read about vascular calcifications.
There are causes, such as injury, or excess phosphorus that overwhelms the body's means to excrete it, and so on. Excess phosphorus binds calcium and forms deposits in arteries, organs, heart, kidneys, brain, etc. Calcifications form in joints , tendons, etc.

This paper, way beyond my understanding , does explain some of it, but there's even more.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8708352/

Even though calcium gets scapegoated in calcification formation, research points to excess phosphate as the main cause. Calcium gets yanked along.

I would recommend getting enough calcium, magnesium, and potassium. Also, there's some research about vitamin k1 and k2 to prevent and possibly reverse calcifications. It's controversial.

I've been massaging my lower legs with magnesium oil and dmso. Careful with dmso, it can burn a little.

I guess we'll have to eat the greens. :yum: https://link.springer.com/article/10.1007/s00223-022-00955-3
 
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Tammy

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My theory is that a virus is involved and affecting the muscles. The capabilities of a virus are endless. Do search on viruses affecting muscles.
 

Methyl90

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Calcium phosphate product can form almost anywhere in the body, we mostly read about vascular calcifications.
There are causes, such as injury, or excess phosphorus that overwhelms the body's means to excrete it, and so on. Excess phosphorus binds calcium and forms deposits in arteries, organs, heart, kidneys, brain, etc. Calcifications form in joints , tendons, etc.

This paper, way beyond my understanding , does explain some of it, but there's even more.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8708352/

Even though calcium gets scapegoated in calcification formation, research points to excess phosphate as the main cause. Calcium gets yanked along.

I would recommend getting enough calcium, magnesium, and potassium. Also, there's some research about vitamin k1 and k2 to prevent and possibly reverse calcifications. It's controversial.

I've been massaging my lower legs with magnesium oil and dmso. Careful with dmso, it can burn a little.

I guess we'll have to eat the greens. :yum: https://link.springer.com/article/10.1007/s00223-022-00955-3
Hence the excess phosphorus has similar effects to oxalate
 

minimus

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Sorry you are experiencing these symptoms. I have severe muscle weakness myself from my mid-back through my legs (rapid fatigability, leaden feeling, post-exertional and random muscle pain) that has severely limited my ability to walk, bend, stand, etc. in the last four years, but I have not (yet) experienced muscle wasting aside from what two neurologists have referred to as normal, mild ”disuse atrophy”.

As @Zebra suggested, your best bet within the medical system is to get a referral to a neurologist who is a neuromuscular specialist. Don’t bother with neurologists who aren‘t neuromuscular specialists - if they take you seriously, they’ll likely just refer you on to a neuromuscular specialist.

Another possibility, if it’s available in the UK and you can afford it, is to get a neuromuscular genetic panel through a direct-to-consumer healthcare company. There’s a California-based company named Invitae that offers a genetic neuromuscular panel that looks for a variety of muscular dystrophy subtypes. There are a number of companies, like Genome Medical in the US, that offer remote sessions with genetic counselors who can prescribe genetic tests like the Invitae panel and then interpret the results once they are in.
 

hapl808

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Another possibility, if it’s available in the UK and you can afford it, is to get a neuromuscular genetic panel through a direct-to-consumer healthcare company. There’s a California-based company named Invitae that offers a genetic neuromuscular panel that looks for a variety of muscular dystrophy subtypes. There are a number of companies, like Genome Medical in the US, that offer remote sessions with genetic counselors who can prescribe genetic tests like the Invitae panel and then interpret the results once they are in.
I did some of the genetic testing through my neuromuscular specialist. In the end, the exome panel results amounted to a big shrug. Still can't walk.