another undiagnosed predicament

[mike123]

Hi there,

I'm really hoping you guys can give me some advice on a couple things. I know you aren't doctors, but I know there is a lot of experience here. I won't bore you with the details of the past 8 months, but basically I have abnormal emgs, ncvs, and spinal tap. All of which the doctors have said are either inconclusive or nonspecific. These are like their favorite words.

Have any of you heard of fat wasting or lipodystrophy? The fat in my hands, feet, and legs are gone. Some might not think this is a bad thing. The problem is all the fat is going to my abdominal area. There's like a fat redistribution taking place. I'm a skinny guy, used to weigh about 132. Now I'm about 10 pounds overweight and it all seems to be going to my abdominal area. I've got this pot belly thing going on. My friends tell me that I'm just not as active as I used to be, but that doesn't make sense to me because if I were truly getting fat from being inactive I wouldn't think I wouldn't be losing it in one place and gaining it in another. It's very hard to show the doctors because they just think I'm skinny, but I know it's not right. I went to a vein doctor because I have veins appearing all over my body. He was the one that gave me the biggest clue he said there's nothing wrong with your veins, it's just that you have no fat on your body so I'm seeing lots of veings. The only thing I could find is that this can happen due to HIV meds. I don't have HIV and I'm not taking any HIV meds.

Just wondering if you guys have come across this and might have any idea.

The other thing I was hoping to ask was about whey protein. Does it contain glutamate? The positives I have read seem to indicate it could be a beneficial addition to a diet. I found a brand that has no msg, lists all this bad stuff that it doesn't have, but I'm not sure if there is something that is naturally part of whey protein that could cause problems for neurological conditions. I'd appreciate any thoughts on this as it's very confusing.

Actually everything is confusing and there are so many differing opinions. And on top of not knowing what's wrong with me it's difficult to even try to attack a problem when I don't know what the problem is. It's very frustrating.

Thank you for your time.

 

[AndyDJX]

Hey Mike,

Not sure what's going on with you, but nothing you mentioned sounds anything like ALS to me. Keep going to your docs to try to get to the bottom of your health problems, but I'm not sure why you're concerned about ALS.

Best,

Andy

 

[mike123]

Hi Andy,

Yeah, I'm not sure what is going on with me. I know there's a lot of folks on the board with a lot of experience. Just hoping to see if anyone has an idea.

 

[gracefullyteaching]

hi there,
Do you know for sure it is "fat wasting"? You mentioned abnormal EMGs... wondering if it is muscle wasting. Did the dr use that term?

 

[mike123]

That's a good question. The neurologist said the things I was pointing out are subcutaneous tissue. She said the areas on the hands she would be concerned about are the muscle (top of hand) between the thumb and index finger and muscle just below the thumb (under side). They say they see no muscle wasting. That's what they claim. They say I'm just skinny and not toned. So this has lead me to believe it's fat loss I'm seeing.

 

[notme]

Without knowing what symptoms of ALS you think you're having--and what was abnormal in the EMG/NCV and Spinal Tap it's difficult to give you any type of suggestions.

Go ahead--bore us with the details--because the little you've posted doesn't tell me much.

Fat around the abdomen is one of the signs of Cushings. It can be a fixable problem--but it has other symptoms you don't seem to have. What's your age?

A little more detail would help--can't believe I'm saying that. And, what did the DOCTOR say about the EMG/NCV? If the NCV is abnormal that does point away from ALS, by the way. NCV is normal in ALS affected areas (unless there is a problem in the nerve along with ALS)

That muscle area she's talking about is one of the first to go in some with ALS--but even that area can be other things--such as issues with the ulnar nerve or issues in the neck. (The thenar and hypothenar muscles)

 

[mike123]

I'm 34. Had a few ncvs and emgs done. One ncv says right ulnar neuropathy at the elbow predominantly demyelinating. The second test was more comprehensive. Found right ulnar motor neuropathy with slowing conduction velocity above the elbow. Also, during the test I was asked to move my foot a certain way and couldn't do what the doctor wanted as a result she wrote the following. Single finding of mixture of small and moderate sized motor units at the left peroneus longus. This is likely a technical factor of the patients difficulty of everting during testing. This may also be abnormal in setting of myopathy.

I've been told the ulnar neuropathy is no big deal and I should just avoid leaning on my elbow. I've also been told the findings are not conclusive. I've also been told that my muscles were not relaxed for one of the emgs and that is why these fibrillations are showing up.

Also in one of the emgs I basically had small fibrillations on my whole back from neck to spine. This is also again where the doctor said I'm not relaxed which is why these are showing up. So she didn't think these were findings. I don't know, didn't seem to make sense to me.

My spinal tap found slightly elevated protein levels. The neurologists said it's nonspecific and can't conclude anything from it.

Some doctors have said I'm hyper-reflexive, others say I'm not. One tested for clonus and said I had four beats. My main symptoms are stiffness, twitching, joint pain, pain in general. I've lost muscle or tone or fat. I'm not exactly sure. The doctors just say I'm skinny. One doctor said I need to continue following up to see if there are changes. This is all very confusing.

 

[SpringOwl]

Mike, I'm in Michigan too. Look up Dr. Ledtke in Saginaw. He is a Lyme Literate Doctor and ALL your symptoms sound like Lyme disease.

The standard ELISA tests are highly inacurate. Go see doctor ledtke and have your blood tested through IGenex labs in california.

 

[notme]

That lyme lab is NOT necessary. Both the CDC and FDA are looking into the practices of these so-called special labs for lyme because it can be diagnosed with the Western Blot--and that particular lab isn't needed to obtain it.

Your symptoms do point away from ALS--NCV is normal in ALS. As to the nerve issues it found, though--I wouldn't ignore them. Left long enough--you'll lose the use of a portion of your hand Let a hand specialist decide.

Joint pain again isn't an ALS symptom. Have they checked for auto-immune conditions? There are a lot of them---perhaps your GP might suggest a good place to have things checked if they don't feel qualified to make a diagnosis.

Hope you get answers.