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Active member
Jul 6, 2005
Loved one DX
east amherst
Hi again everyone! I don't know if you all remember me writing but I talked about my brother who has been exhibiting Bulbar symptoms....We went to the neuro and he did an EMG~it wasn't 'clean' as he noticed something in both of his arms (nerve damage? i am not sure) he repeatedly asked him about his strength. His strength is fine. Anyway, he re examined him thoroughly including making him push his tongue against his cheek, etc... everything was fine. he can't understand why he can't pucker or whistle as it seems he has no other problems except for sensory loss in both of his cheeks. Remember this is familial so we are very nervous. The neuro is doing bloodwork and aside from that, has told us only time will tell...he seemed a bit baffled. In speaking to my brother today, he mentioned that last night he started having some twitching in both of his cheeks. It lasts a second or two and then goes away for a few hours. As you can imagine, I am fearful for him. Any thoughts anyone? Thanks (again) Janice
A second opinion perhaps. A couple of my doctors disagreed on my diagnosis because of some readings on the EMG that I am convinced were caused by operator error or anomalies with the machine. Also as the doctor says, sometimes only time will tell. That's not very encouraging but at least it appears to be slow moving whatever it is. Good luck.
hi al and thanks. actually the doc is an als specialist here. unfortunately the hereditary form is very fast moving :(
Hi Janice. I had never heard that familial ALS was any more fast moving than the sporadic. I know of one family where the brother's moved very quickly and the sister is moving rather slowly. She does follow the gluten free diet with no meat etc that some people are proposing here. Once again we are all different. Don't give up hope. Take care.
Janice - I don't mean to discount your family heredity so this is just a thought I'm throwing out. Is there any chance the symptoms he has could be stress related? Does he have any unusual amounts of stress in his life recently? We think this may have been the problem with my husband. He was having weakness in his legs, problems with coordination, twitching, feeling "weird" and more. He saw a couple of neuro's and had many tests done. While it seems incredible and unbelievable that stress could have caused all this, his symptoms have lessened in the last 6 months or so (which coincides with a reduction in stress).

We still don't have the answers or know for sure. There are other illnesses out there, but no one is giving us a diagnosis so we're just waiting to see.

Janice - I really hope, for you, that it's not ALS but we are here for you as you go through this scary time, and especially if he does end up having ALS. -Me-
Thanks so much for your kind words! It's funny you talk about stress~he is under an extreme amount of it. He is not happy in his marriage as he is relied upon to do everything, and i mean EVERYTHING. Cooking, cleaning, wash, you name it. Anyway, on top of that, he had his hip replaced 2 months ago, (symptoms started before this). He is 100% back to normal thanks to his postive attitude. I think the twitching may be due to stress, but the loss of sensation in his cheeks combined with the inability to whistle or spit has the neuro puzzled. I will let you know as soon as i hear. It is comforting to know there are people out there i can 'talk' to. I have 2 small children and worry for them. I sure hope they find a treatment soon. The neuro thinks that Rocephin is a very promising drug coming up! Blessings. Janice
Hi Janicebuf,
Glad that you can come here to talk. I just wanted to say that I know of a case of familial ALS where a woman lived for over eight years from the unset, so there again every case is so different. I would have great hope that your brother does not have ALS, since his symptoms seem different in some ways. My tongue was the first thing that I lost the use of, and I can not touch my cheeks with my tongue, I can't move it at all. Stress can produce so many symptoms, and it seems your brother has more than his share of it. But, as everyone has said, stay here where there are people to listen and help..and pray for your brother.
Thanks Granny~ your kind words and the words of everyone here bring me great comfort!
My dad is currently taking Rocephin to treat Lymes disease. My dad also has bulbar symptoms. His speech is very slow and he only says a few words at a time. I am pretty sure his tongue is all right. He's been on the Rocephin for about a month now. His speech has gotten a little quicker, but it is still very slow and only a few words at a time. If your neuro is picking up on the Rocephin, I have to warn is very expensive. My parents are fortunate enough to be able to aford it, but it is costly. As of now, we feel like it is worth it though because his symptoms have been improving gradually. I would love to see this medicine totally cure my dad's symptoms, but only time will tell. We have hope though! Is your neuro in the states or Canada? Just curious.
hi dana, actually, if this is als, there is a clinical trial starting in syracusse, ny. we are in the buffalo area. so, i think we will be covered. no matter though, we will pay for his treatments. i am curious to hear how your dad does. i find it hard to believe there isn't a correlation between lyme and als. my cousin (age 21) died from als and they were looking for lyme for the longest time. everything i have researched for als seems to always have lyme disease somewhere in the articles.
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