Search results

I think you know the answer to the question you are asking. Of course bulbar ALS would have presented by now. At this point your thoughts of bulbar ALS are irrational. Try to meditate or something to relax and take your mind off of it. You're in the same boat as a lot of other people. It is...

Hey ListlessOne,I share many of the same symptoms as you. I know it's tough not having a name to put on our condition, but it's certainly not remotely close to ALS. You can take that to the bank. I asked my neurologist what to call this and he didn't have an answer. He believes it's either...

My improvement began when my local neurologist started treating me for leaky gut syndrome back in July. He said it was worth a shot and he was right. Most main stream medical doctors won't even bother with leaky gut. Been taking l-glutamine, multivitamin, digestive enzymes, and strict...

Hi. I remember you. We joined the board and started having symptoms about the same time. I have similar symptoms as you do. Lots of sensory symptoms to go along with the twitching. I am doing much better as of today.- could change tomorrow though : )As far as ALS my dr at Johns Hopkins said...

I mostly twitch on my left side. I don't think it is uncommon to have one side twitch more. Btw I don't see any mention of pain in in your posts. If twitching is all you have consider yourself lucky. I have nerve pain as well as twitching, but getting better and better with diet...

I have mild small fiber neuropathy confirmed by skin biopsy. The million dollar question is what is causing the neuropathy. They haven't been able to find a cause unfortunately. The mouth pain is the worst though. Very painful. Luckily mine got better with some diet modifications. Not 100%...

Interesting. Just so happens today my neurologist referred me to an endocrinologist. He said this is likely either autoimmune or some metabolic dysfunction . I may show this to the endocrinologist. Thanks for sharing.

I get the burning tongue along with burning in my legs. In my case they are related to the twitching. Perhaps you have certain food sensitivities. I know dairy makes mine much worse.

I took a 10 day course of Bactrim antibiotic for a staph infection in my leg. I finished two weeks ago but my pain seems to have increased since I quit. Bee sting type pains in legs and all over. My question is could this be related to the antibiotic use?

Yes I've had the tongue/mouth pain as recently as two months ago. Tried medicine but it didn't help. Can be very painful. Thankfully it went away. My pain in general has gotten significantly better with diet modification. Hang in there you're not alone with the tongue pain. Comes with the...

If you have been having symptoms for three years, forget ALS. People with ALS don't go years wondering if they have it as my neuro explained to me.

Thanks SAM!You have helped me a lot. Where do I send the check. : ). The product I'm taking GI Sustain by Metagenics is a powder mix and is loaded with L-glutamine. Is that the same or similar to L-glutamate? It seems to be working but the problem is it's very expensive. Amounts to $77 a...

Yes the doctors think leaky gut as well. I am glad they at least recognize that it exists. My gastro dr say it exists we know, but the exact cause and how to treat it is still being studied. I do feel much better with diet modification and a product call GI Sustain from a company called...

Carcinoid is a slow growing cancer that forms in the gastrointestinal tract mostly. The reason I am getting tested for this is because one of my symptoms is flushing and that's one of the primary symptoms of carcinoid. I probably just have food sensitivities but getting tested for carcinoid...

My neurologist suggested that I get a full gastrointestinal work up and I am in the middle of the process. So far I've had blood test and stool samples for various parasites and bacteria. All negative. Colonoscopy was normal. Upper endoscopy normal. The one thing that is abnormal so far is...

Just had my appointment with my local neurologist and he said I have some strong symptoms of leaky gut. Yes he actually acknowledged leaky gut. Since Hopkins wasn't able to help he suggested treating my gut. He wants to start with essential daily supplement, CoQ10 and magnesium glycinate for...

Anybody else experience mouth nerve pain and palpitations? I am having a lot of palpitations and it uncomfortable. Dr said the mouth pain and palpitations could be related.

Anybody take Tegretol and have their twitching get worse? I took it last night and the twitching is really active today in my calves more of than ever.

By pain mean widespread neuropathic pain. This is my worst symptom by far. Would probiotics be worth trying even if my IG bloodwork was ok? I'm in a lot of pain and no doctor has been able to help. It seems I'm out of options except just trying to treat the pain. So frustrating.

My IGG, IGA and IGM were all normal. Is there still a chance that my gut is out of balance despite the normal test results? I am thinking about trying a treatment for the gut but don't want to makes things worse. I had a gluten holiday when I went on vacation last week. I was ok for a couple...