Was on here a few months back but now doctors suspect ALS

[ozair]

Hi there,

I was on here a few months back ( i have pasted my old message at the end for reference ) since then seems like the right side of my body kept getting worse, im at that point where my right leg keeps twitching all various spots all the time, my right arm doesn't twitch as much but has gotten much weaker, i could feel the difference while walking and holding items, my left upper eyelid has also got weaker and twitches alot, i went to see the Neuro and he suspects something isn't right and wants me to do an EMG again, ive already had one done Jan this year and that was clean, he said due to the symptoms there's a possibility that its ALS. Its really freaked me out, i was under the assumption that clean emg's mean no ALS but now this guy is telling me that he isn't sure and it could be ALS.

Any opinions regarding this would be much appreciated.

"

Dear All,

I have basically been suffering for the past 9 months from various symptoms which started off as slight weakness and twitching in different parts of my body, that started back in Aug of 2014 since then i went to see some Neuro's who did a MRI of my brain and various blood test on me such as ANA profile etc all the test came back negative, the other issues i had were test such as ESR and C-reactive which showed that i had inflammation in my body but couldn't pin point the problem, anyhow since then the symptoms have slowly gotten worse but there's been small periods when they didn't bother me too much or i felt like it improved slightly, tho it could be due to the fact that i tried not to pay to much attention to it during tho periods, anyways last September i had my first EMG and NCV on my arms and legs which came back normal, i had another one in Jan this year which came back normal as well, but seems like lately my symptoms have gotten worse, i feel like i have more twitching especially on my left side ( shoulder blade, knee and bicep/arm) i also feel like i have gotten weaker and can't lift as much as i could before or walk as much distance, i even get tremors and feel a bit of shaking when i lay down sometimes or relax my body, the only thing my doctor found was that i had mild Psoriatic Arthritis which a MRI in Jan found but my Neuro seems to think that my symptoms are not related to that and its a totally different condition all together, most of the time i can feel my twitching but sometimes i have seen it occur with feeling it as well in my elbow area, at present my shoulder hurts and sometimes i feel like i cant lift them, especially after waking up which i have attributed to maybe falling asleep on my arms but it happens when i overwork them as well but i usually am able to lift them up and keep them up over my head for over a minute without too much pain or discomfort, i also get twitching in my left palm and hands sometimes, now basically i don't want to waste your time going down the do i have ALS road but judging from my symptoms and what ive been tested for and my diagnoses do i need to go in for a second opinion or just try to ignore it and see what happens ? my current neuro hasn't come to a diagnosis as yet but has said it could be BFS and a combination of other non specific issues ( for e.g Fibromyalgia ) he has prescribed me some anti inflammation medication, anti depressants and stimulant's but they don't seem to help much. Anyways thank you all for your time and will be looking forward to any advice or feedback.

Thank you

"

 

[affected]

Is your neurologist a neuromuscular/ALS specialist?

You only mention feeling weaker, but not that clinical weakness was found.

The eye is the thing that makes me wonder - not an ALS symptom, but could be something neurological still.

It seems when I reviewed all your previous posts that your symptoms are jumping around, last time you thought you were bulbar onset.

I would ensure you are going to be seen by an neuro that really knows about the neuromuscular diseases. Not all neurologists are very good at working these out.

Good luck. Let us know after you have had the EMG and tell us what the summary report said. In the meantime try and relax, even though that is hard to do.

 

[Atsugi]

OZAIR, it's always exciting to me when I meet someone from the Philippines. I really enjoyed my many deployments there and the two years I lived there. Wonderful people and beautiful country with great food.

But you still don't have ALS. Your EMG's were clean and over the past year of symptoms, none of them have indicated paralysis, which is what ALS is all about.

All the symptoms you've described on this forum over the past few months have been pretty benign, really. Some twitches, some feelings of weakness. No paralyzed muscles.

Although all the websites and the literature about ALS list all the possible symptoms of ALS, they're mostly all common to many diseases and conditions. The only thing that matters is the thing that makes ALS what it is--a killer. That singular unique symptom is paralysis--a limp, useless muscle that doesn't move, doesn't contract. There's no feeling associated with ALS paralysis. There's no feeling of weakness.

Personally, I think you're wasting your time and money on doctors and EMGs. Your symptoms are common among healthy people and you're looking at a rare disease. Makes no sense.

A half-dozen of our members who have experience with ALS have read your posts, but no one reads ALS in your case.

You've been seeing neurologists. They look for neurological problems. That's all they know. You should have an Internal Medicine doctor in charge of your health investigations. An IM doc can direct you to the appropriate specialties. I'd start with optimizing your thyroid, hormones, and diet.

For the purposes of inquiring into ALS, forget about all these symptoms you've been complaining about. Focus for a moment on ALS--paralysis. Here's how it works:

Many people think ALS is in the muscles. It really isn't. It's in the brain. In ALS, a motor nerve is destroyed in the brain, and so it can't send a signal to its muscle. Since the muscle doesn't get the signal to contract, it remains limp and useless, paralyzed, forever, until you eventually die. Then the ALS moves to the next nerve, and another nearby muscle is paralyzed, then the next one. Typically you would lose all use of your hand or foot muscles before the ALS moves to another limb.

The EMG would have picked up the denervation months before any symptoms would show up. Both your EMGs were clean, yes?

I'm not a doctor, so I can't diagnose you. (I personally think your nutrition is out of whack and your body and mind are physically depressed.) But I know ALS fairly well, and you're wasting your time investigating it.

I wish you the best of good fortune, and hope you don't come back. Our website, frankly and sadly, is all about people dealing with an early and torturous death. Not a good place to be. You don't want to expose your mind to this depressing place. Good luck.

 

[ozair]

Dear Affected and Atsugi,

Thanks alot for your replies, i really appreciate what you guys are doing on here for people like us who are in limbo about whats going on or in the process of getting diagnosed, your advice has been very helpful for me, no doubt i could possibly be suffering from some other illness which has symptoms similar to ALS or nothing at all, although i must admit that nothing is 100% in life and unfortunately i could have this dreadful disease or have it in the future, thats up to God and i would leave that to fate but for now i will just try to live my life and focus on getting healthy, i have actually decided not to go ahead with the EMG, as a lot of you mentioned the main symptom is paralysis of the limb which i don't have as yet, i was actually told by my family doctor not to have too many EMG's done as they could give a false positive at some point and it would further freak me out. Due to that reason and your advice i will leave it in God's hands now, if i feel that my limbs are becoming paralysed i will be sure enough to go see a Neuromuscular specialist at that point, for now i will focus on finding what else could be causing my body to react this way. Thanks again for all your advice and help, my thoughts and prayers are with all of you.

A special Thanks to Atsugi for the detailed reply which really helped put things in perspective, i also appreciate all the kind words regarding my country and i hope you can visit again sometime soon in the future, please let me know if you do first a round of beers is on me.

Thank you and God Bless

 

[affected]

You could well have something else going on, but your symptoms are not like ALS which is what you need to remember - you just think they are.

All the best

 

[Atsugi]

As omnipotent as God is, I think we should see doctors. Just as a backup, of course.