Multiple muscle symptoms - confused

[ltr]

Hi niceguy,

I have been reading your posts and we have a lot of similar symptoms. Before I forget, I want to tell you that the Coke makes it worse because of the caffeine. Also, if your neuro never heard of benign fasiculation syndrome, get a new one.

For 15 months I have been having the vibration you speak of. It is so intense now when I am trying to sleep, that I have a hard time getting a good nights sleep. I now have muscle twitching and weakness that started in the right leg, but is now in both legs and arms. My EMG of the legs 9 months ago was normal. Loads of bloodwork and MRI's have been normal, but I continue to get worse. I have the same breathing problems that you wrote about. I have even been unable to sing at church, even softly. I have gone to the ER because of shortness of breath and they find nothing, yet I struggle to get a deep breath. Just like you said, other days it is completely gone. I am not sure if it is the diaphragm muscle weak at some times or what, but it is definitely there and it is not related to anxiety. I also noticed that my muscles cramp and exercise bothers them for almost a week later. I try to build my body back up and it makes everything worse.

I have the brain fog very often. Sometimes I have a hard time thinking of a word while I am talking and sometimes I forget something simple. I have also had to get glasses and have the prescription changed twice in the last year and a half. I never wore glasses before this.

Our symptoms are very similar, at least I think. So, maybe we can keep up to date with what tests we have had and what our doctors think. If you want to email me, I will be glad to let you know what my neuro says when I meet him on Thurs. Leslie

 

[niceguy]

Hi ltr,
First of all, I hope that whatever you have stops progressing.

After doing a lot of research (online... but still research) my problems strongly suggest a metabolic condition, as do yours. The breathing problem hasn't come back and I agree with you that it wasn't anxiety, because it was there the second I woke up.

The biggest problem is the number of possible diseases that share our symptoms. I never knew there were so many overlapping conditions, especially in metabolic disorders. Atleast at this point in time my vision hasn't degraded, and the actual problem was a focusing issue, which is attributable to glucose level problems (commonly found in diabetes). Although the hip muscles, vision, loss of sensation, buzzing, fatigue, ocassioanlly jumpy muscle response, exercise intolerence combined make me wonder if it's something more serious. I was thinking it could be a spinal problem but I get twitches on my face, ear etc...

I've read online that certain metabolic disorders attack and then remit. During those attacks, significant amounts of muscle will waste away (usually noticed during urination - color is dark / rusty). Others, usually those associated with exercise intolerence, typically don't progress to a level where a wheel chair would be needed. While the other group that presents itself with true muscle weakening is more serious. From what I remember the main difference between the two was: the less severe disorders don't allow enough energy into the cells, while the others allow the build up of chemicals, and the toxcitiy destroys the muscle cells. If you haven't already done so (I'm sure you have) - check out carbohydrate / atp, and keratin metabolic disorders (or just metabolic disorders in general). I'm also wondering if you've noticed an increase in body odor? I noticed a stronger odor from my feet before I even knew to look for it. Also, since you didn't mention severe cramping it probably rules out amonia buildup in the muscle, which would also cause brain clouding. Since the vision has continued to drop off (not sure if the clouding has progressed - have you tried changing your diet?), it might not be a bad idea to have another look at your brain. Some metabolic disorders produce proteins that will accumulate in the brain - I hope I'm not causing more undue concern, I just want to share what I've read online. The worst is "mad cow"(you don't have it) which usually kills within 1 year of clinical onset, while other metabolic disorders cause atrophy of the brain (obviously those changes can be seen in an MRI). Of course there are those incredibly rare diseases that only show up in a handfull of families around the world...

One interesting statistic that I heard yesterday on the radio had to do with huntington's disease. Did you know that the number of clinical cases of huntington's disease is 10x higher in DE than the national average? Makes you wonder about how the environment can affect us (I work in DE, so I no longer drink water from the tap, just kidding).

To me, the fact that your eye sight has been changing rapidly certainly doesn't sound like ALS, nor does the sporadic breathing problem. I have an appointment with an Endo later this month, hopefully she'll have something to tell me besides "I have no clue". My neuro ran every test he could for a pathalogical problem, and everything came back clean. The babinski response was completely normal, my knee jerk reaction was also correct, general reflexes were normal, NCV, and muscle contraction were spot on as was my strength. I recently heard that BFS has another clinical name (can't remember it right now), and it's possible that in the moment my doctor didn't make the connection.

Good luck and I'll let know how things go.Thanks for the offer to see what your Neuro says. I'll think about it and I'll probably wait until I meet with my Endo. You can always PM me if you feel the need to talk via Email shouldn't wait(thanks for the offer).

 

[ltr]

Hi niceguy,

Please check your personal messages.