Hi - I’m Phil.

I’m 54 yrs old and had a gastric bypass in 2011. I weighed close to 400lbs at the start of the journey and am currently 174lbs to I deem the process as a success.

I have in recent years though developed a chronic weakness in my muscles - mainly legs, shoulders etc (I also have a heartbeat issue). I walk with a waddle and struggle to get up from a sitting position and struggle with stairs etc.

I have had many tests including MRI (x 2), nerve conduction tests, many different blood tests and finally this week, a muscle biopsy.

My neurologist cannot diagnose the issue - the biopsy is the last attempt. We met recently and he has now said that he thinks that I have ‘idiopathic myopathy related to chronic nutritional deficiency secondary to gastric bypass.;

I am concerned about this since none of my routine bloods have ever thrown up a deficiency - in the past few years I have had many different blood tests in addition to the usual monitoring and apart from a mild case af low iron which is sorted now, I have not had any levels that have been flagged up as abnormal.

So - I’m not here for medical advice as such - I just wanted to ask the experienced members - have you heard of many people who have experienced muscular issues (eg atrophy /stiffness etc) ? My research so far has not found any examples - apart from a few cases but they were down to vomiting which I have never suffered from.

What do we think - any opinions on this? Thanks in advance.

Phil

This is baffling.
How much exercise do you do each week?

I haven't heard this one before, and I've been hanging out here for eight years. People do lose muscle as they lose weight, but getting enough protein and regular exercise keeps will keep you from getting too weak. And you're right - you would think nutrient deficiencies would show up on your blood tests. I agree with toodlerue - this is kind of baffling.

I just read a peer-reviewed article online that said myopathy is a rare complication, but it's related to vitamin deficiency - and usually in people who haven't been taking their vitamins. It's usually resolved when they start up with supplements again. But in your case, there aren't any deficiencies showing up in your bloodwork - so yea, this one is puzzling.

Edited February 25, 20233 yr by catwoman7

Thanks for your replies. It is definitely baffling and very frustrating.

I am limited to the amount of exercise I can do. 5/6 years ago I could run 5k- I now walk maybe 2k most days. Muscle stiffness stops me doing much. I walk the dogs most days and my main hobby is vegetable gardening which keeps me active.
I used to do some weight training but have been advised to avoid this by the neurologist.

My own research into muscle weakness /myopathy etc tells me that most of the more common forms of it are irreversible and there is no real treatment available. What bothers me though is that if the neurologist is correct and it is a consequence of the bypass - the it could be possible to reverse the situation.
Thanks again for your replies.

If your blood tests have been fine, and you have had no history of serious nor long term nutritional deficiencies, then they don't have a clue what is causing it so they are blaming your bypass. I would get a second opinion.

If your blood tests have been fine, and you have had no history of serious nor long term nutritional deficiencies, then they don't have a clue what is causing it so they are blaming your bypass. I would get a second opinion.

The reason I mentioned second opinion is there are many causes of myopathy, and it is imperative they find out what is causing it early on so it can be treated properly. It can be congenital, even an infection past or present, rheumatoid arthritis, electrolyte imbalance... Etc. One of my siblings has it due to rheumatoid arthritis and gets monthly steroid shots and treatments to help with his autoimmune condition. Another had it due to being in a long term off and on state of dehydration. Both had significant improvement from their treatment.

Thank you Tomo….I think that when I get the biopsy results, if they are inconclusive (which I have been warned they probably will be), the next step is an endocrinologist, iI’m hoping that the change of direction might give some insight.

i’ve spent time looking over blood results going back 6 years today and have found that most of the results are i. The lower range but within the ‘normal’ parameters. B12 has never been low, for example,

Hi thanks for sharing your story Phil. I’m 39, had bypass in 2020 and in 2023 I have leg mobility issues, numbness, tingling in my lower body, nerve pain and none of this can be explained. I’m also baffled at what is going on. I took all my vitamins, checked my levels and then suddenly my ast/alt shot through the roof, my vitamin B6 was toxic level (over 2000), my legs stopped working and I went by ambulance to hospital. Besides my blood work, all imaging is fine. Did you ever get diagnosed with anything? It’s been 6 months of hell for me. I lost and maintained 70-80 lbs from surgery and I thought I was doing great until this happened. I never read anything like this and now they’re suspecting the same nutritional deficiency as the issue even though I didn’t feel sick before and my levels were good until this “attack”. I hope to get my strength back soon, I’m working so hard to get my legs back and I have no answers of why this happened.