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Bfloyd

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Good morning ,

Last time I was here I was so angry at the Drs I was rude. And I apologize for that. I can't figure out if this is my third headed into my 4th winter with an issue that's progressed pretty quick.

I have stayed off internet since my meltdown and actually thought I was going crazy.

Symptoms hit me smack in middle of peri menopause. But medabolic test have been done and ruled out.

The last couple years my first symptom was slight weakness but nothing like I've seem on here. My drs thought I had lipodystrophy. The main symptom was twitching and I actually finally was ok with the BFS dianosis I was given.

My muscle tone has gotten worse and in last 6 months. Ive had my hearing aid remolded for 3rd time. I've had to get 2 new custom shoes inserts, and am now down to size 7 not 8 shoe size.

There was only a very slight change in my Nerve conduction
Test and was told I had tarsal tunnel.

The biggest change is my bones or muscle are moving pretty quick and my mouth where I had perfect bit my top teeth are covering bottom and my dentist has confirmed peridontal disease.

She asked me to revisit the Dr and I said no way can 3 neuro be wrong.

I was told if I was not losing weight I was not losing muscle. In fact I've actually gained 7 lbs eating poorly.

I was sent to Rhumatologist by Nuero since Lupus runs in family.

The only thing he found was low IgG and spot protein in my urin but not enough to worry about.

I feel like I've lost padding over joints and bones. I cannot go to another Dr. Last one was Rhumalogist and the low IgG and spot urine test just are not worth even looking into.

If my symptoms started 3 years ago and I'm still passing stengh test surely this cannot be ALS. I'm still standing , walking , and I'm actually use to the BFS now. What I'm concerned about is the loss of padding.

One thing that's happened that's a positive is my chronic pain has subsided. It's like there is no padding to have pain in.

I know there are hundreds of diseases that can mimic ALS I guess Im curious If anyone had heard of low antibodys and spot protein in 24 hr urin.

I'm at a loss and my family Dr who's a Nurse Practioner is at a loss. The only Dr I've seen is her and Rhumalogist since I was on here last. After my rant last time I said I'd never go on again.

I hope this makes a small amount of sense. Should I bother asking the Nuero to check me again With new test results of urin test and IgG test. I didn't even bother sending them to his office.
 

Nikki J

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Hi sorry you are still having trouble. If your NP is at a loss is she referring you elsewhere? Did your rheumatologist have any direction for you? No clinician knows everything but surely they can tell you if you should be seeing another neuro or what. As you say it doesn't seem like ALS but you are unwell so you need some direction from your pcp
 

Bfloyd

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Thanks for responding, my Rhumey is 3.5 hrs from here and after finding low IgG he sent me to local immunologist. Rhumatologist said i had unexplained chacxia and sent me on my way Immunoligist has found spot protein and I'm getting more blood drawn Oct 30. After dentist I called family Dr and he has suggested the university again.

There is a large neuro science center here that I'm going to ask him to call to try here one more time. Travel gets expensive. My twitching hit me very hard location to location. I could live with BFS if I didn't have such bad atrophy. It feels like im shrinking. Face has changed , neck size changed , shoe, bra, glasses falling off.

I guess I revisited the page here hoping someone had heard of low IgG or spot protein. Im so frustrated and feel beaten down by my Drs I kinda gave up and figured I'd get sick enough at some point they would figure it out. And that's the point I'm at now.

Was wondering does a guy named Write ever comment anymore ?

Thanks again...
 

vickim

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He hasn't been on here is a long time.
 

Alyoop

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You are correct when you said " surely this could not be ALS". great that you got it spot on. If your EMG says your changes in your feet are because of tarsal tunnel, then they are. The specific differences between an EMG showing tarsal tunnel or EMG is like the difference between a rock and a mouse. Move on and enjoy each day.
 

Bfloyd

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I actually have blood work to check for MG Tomorrow and a brain MRI next week I'm assuming looking for lesions. They have also called in to see how long a muscle biopsy will take. It's a little more sever than they thought but I knew it was unusual as soon as it hit me His words were cachxia. But your right after 4 years with these changes I'd be in a puddle if ALS...I will keep you posted tho. Thx
 

monster

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It sounds like your doctor is being very thorough.

I had blood work that showed high IgM (no m spike) and spot protein in my urine. I had x-rays done and a 24 hour urine test, all fine. The neuromuscular doctor wasn't concern after that. My IgA is also low.

Good luck to you tomorrow. Let us know how you make out.
 

Bfloyd

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Thank you, test results were not in Friday afternoon. Low antibodies and IgG was lowest. They never would give me dianosis of BFS, people seem to be moving pretty quick at moment. I guess when they see the atrophy finally all over (been called cachxia to me) they are trying to stop it. I even have an appt with nutrition person this week. Obviously not getting the protein I need. Muscle biopsy has been called in to get scheduled. 4 yrs this winter is enough... The only think that slows my fasiculstions is cannabis oil at moment.
 
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