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Bluestar

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My husband is 46 years old and an Army Veteran. He has been having multiple problems for several years such as falling over when standing still, sensitivity to bright and flashing lights, panic attacks, always forgetful, trouble swallowing, hand and arm tremors, and
random body jolts. After running tests for heavy metals, toxins, parasites, MS, fibromyalgia, tumors, pinched nerves, etc. and everything coming back clear, they basically said it was all in his head and being caused by PTSD from his time in the Army. They put him on Adderall to "stimulate his nervous system" and Xanax for panic attacks. He was taking the Adderall daily and the Xanax 2 to 3 times a month.

Over the last year and a half or so he started he started stumbling. Very seldom at first, then more frequently. He would say "If I would just pick up my d@mn foot, this wouldn't happen." He started choking when swallowing more frequently, dropping glasses, feeling completely exhausted very easily and needing to nap more frequently, and becoming agitated because he is not as strong as he used to be. He was/is having twitches in his calf, upper arm, and eye. The one in his eye bothers him, but he hardly notices the one in his leg or arm. He usually sees it more than feels it if that makes sense. Over the last 6 to 8 months he has also started having problems biting his tongue and inside of his mouth pretty frequently. He has always had a bit of post-nasal drip due to allergies, but now it gags him often until he vomits. He has problems raising his arm. He feels the problem is in his shoulder because it gets sore when he has used his arm multiple times. He is unable to grasp and pull chip bags open so cuts them open and has problems opening bottles.

He often feels stiff and has a hard time trying to "wake his muscles up". He says basically it's hard to get them moving when he first wakes up. If he just gives in and lays in bed he becomes more stiff, but once he gets up and starts moving he feels better once he can get everything moving. He has always been thin with well defined muscles. Recently we've noticed he is starting to have less definition in certain areas.

About 6 months ago his regular doctor moved and we started seeing a different doctor. The new doctor reviewed his tests and asked quite a few questions about family history. There is no history that would cause any of this. The doctor then asked about his military service and found out that he had been put on Mefloquine as an anti-malarial and it was soon after that he started having problems.

After some research and a few more tests he said he has Mefloquine toxicity which is causing some of his problems but not all of them. He is scheduling him with a neurologist for testing. Since most other things have been ruled out, he needs to have an EMG and another nerve test done because it is pointing to amyotrophic lateral sclerosis. (The doctor put it more eloquently than that.) This was a couple weeks ago and I have been reading ever since. It seems the more I read, the more confused I get. I had never heard of ALS except the ice bucket challenge and feel horribly guilty that I did not know much of anything about it. I didn't even put 2 and 2 together until I typed in "amyotrophic lateral sclerosis" and ALS showed in the results.

I have read and searched in the forums here and elsewhere to see if anyone else has experience with Mefloquine because I am hoping beyond all hope that this is not ALS and it is something else. I also may not have been looking in the right spot, but have not seen anything where having another problem of the neurological system along with ALS is common.

The other signs that make me hopeful are looking back on the doctor testing his reflexes and such. When he did the foot test (Babinski I think it is) although his 2nd toe jerked up ever so slightly, the big toe did not. When they ran the depressor over his stomach, he had a muscle twitch near his ribs, and I remember them tapping on his hands, but don't recall seeing what happened after they did. His other reflexes seemed good (I'm no expert, but he had quick responses after they would tap. I wish I would have paid more attention.)

I know you all are not here to diagnose, but I have seen so many times where people list their symptoms and you all quickly weed through and point out why it is not ALS. I would rather be told the truth of course, but right now I am hoping there is a more simple answer that is being overlooked.

I know this is long, but I did try to keep it short so I know I left out details. If anyone needs more information, please let me know. Thank you so very much.
 
The army discontinued mefloquine because it was found to cause psychiatric problems, something like PTSD (not ALS), in rare cases.

The following symptoms you mentioned have nothing to do with ALS, and point to something else: sensitivity to bright and flashing lights, panic attacks, always forgetful, trouble swallowing, hand and arm tremors, and random body jolts.

Twitches "all over" are not the way twitches occur in ALS. That's most likely anxiety. Stiffness is not ALS. ALS is limpness, the opposite of stiffness. You can't "wake up" your muscles in ALS: once they are affected, they never, ever get better.

Although the weakness bothers me, it doesn't necessarily say ALS. Could be many things.

I'm not a doctor, and I can't rule out some sort of motor neuron disease. But I would be surprised if it's ALS, since the weakness seems to be happening all over at once: foot, hand, swallowing. ALS tends to work up from the feet, or work down from the swallowing; it doesn't appear everywhere at once.

Your neurologist has to rule out hundreds of other diseases first. ALS, while fatal, is rare. Your husband's symptoms, taken as a whole, just sound NOT like ALS. Be sure to tell us what the final diagnosis is.
 
Mefloquine not only causes PTSD and/or psychotic type symptoms , but it is neurotoxic and causes permanent brain injury and degeneration. They only black boxed mefloquine in the last couple of years. They gave it to my husband 25 years ago. That is why I'm wondering why they are even looking at ALS when it seems most everything would be related to the mefloquine.

He has not had the twitches all over. Just in the affected leg, arm, and then his eye. He is stiff all over first thing in the morning, but once he is up moving around he loosens up. The weakness remains in his leg, arm, and hand, but if he really concentrates on what he is doing, he can make sure to pick his foot up high enough to not catch on things. If it were ALS, no amount of concentrating would make him be able to do that right?

It all started a 1.5 years ago with his right foot dragging slightly. Then about a year ago, problems being able to move his right shoulder. It's been about 3 months since his right fingers have not been able to grasp well. So it seems to only be affecting the right side. Which if I understand correctly would be another strike against it being ALS. The swallowing he has been having problems with for a lot longer, but that is known to be caused by the mefloquine toxicity.

I have no doubt there is something neurological going on, but like I said, from what I had been reading, it did not make sense for it to be ALS. Of course I'm no doctor either and all of the neurological processes are so very confusing, I wanted honest input to make sure I'm not looking at this with blinders on because I so badly don't want it to be that.

Thank you so much!
 
Seems like you have a good handle on the situation. Good luck.
 
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