Doctors. I am 35 and have had a EMG of right leg, calf, upper leg, right shoulder, right arm bicep right hip area. I am in need of some advice "opinions" from a als specialists. My emg is normal. My fasiculations began in April. I understand the criteria for an official dx of ALS. I understand the critieria for probable als if clinical criteria is not met. I am not sure my nuero is one that I should continue to see. I have lossed faith in his services. He doesn't appear to trly understand ALS as he said that twitches aren't felt by ALS patients. That and other statements have me question his credibility.
1.If bulbpar onset, even though emg is normal on limbs tested, what is the likely hood that these same test would show normal when in fact als bulbar onset is taking place. I know about clinical criteria, I am asking for a percentile opinion on what the likely hood is? How long after motor nueron denervation in bulbar onset would an abnormal emg show up on other limbs? Should I get emg on my throat area??
2. What does tongue atrophy look like? I heard of teeth impressions on (als) tongues with bulbar onset. I asked my nuero and told him that I believed my tongue has atrophied a bit and he didn't bother looking at it. He did say that teeth impressions would be on the tongue and that was that. I believe that he should of looked at my tongue. I can chew and push the sides of my cheeks out with my tongue, I can sweep my mouth with my tongue, range is good but I believe that I can see a few teeth impressions in my tongue. If this was due to als , wouldn't I have weakness in chewing by now? Wouldn't I have problems swallowing all the time? I need a specialist to answer as I have lossed faith in my nuero. He believes this to be anxiety however, anxiety doesn't cause teeth impressions. Is it normal to have any teeth marks on the tongue in any way? Would these marks be discolored etc.
3. finally, I would like to know if you can refer me to a place in Tucson for a specialist to takeover my medical needs.
Sorry about your tongue fasciculations. One of the problems is that there are strict criteria for ALS diagnosis by EMG. One needs three different muscle groups involved and so by this criteria some patients with ALS are not ALS by EMG criterial until later in the disease. If your physician thought you had bulbar onset ALS, one should see changes in the paraspinal muscles of the cervical region, the tongue and possibly the muscles of mastication. If you truely had bulbar ALS, you should have difficulty swallowing, chewing, drooling, and moving your tongue around. When you stick out your tongue in a mirror you should see your tongue undulating. The bulbar type is usually rapidly progressive.
Without doing the physical exam or seeing the EMG it is difficult to tell you if you do or don't have ALS. Just tongue fasciculations do not qualify as bulbar ALS. There needs to be muscle weakness. Sounds like you do not have tongue muscle weakness.
A good neurological institute is the Barrow Institue.
Would the undulating be obious to a pesone like myself or takes a trained eye? secondly, could you go in to detail about what tongue atrophy looks like? Teeth impressions? some description of what I need to look for as I may wish to pay for another emg and they are very expensive. I understand that many areas need to be involved be a dx of als is made. Second , could you please tell me what the likely hood of a normal emg on other limbs if bulbpar onset was in progress? meaning , wouldn't it show up in other limbs prior having tongue problems?
This is what I am seeking to understand. IF they don't usually show up if bulbar onset then I need another EMG?
Yes you would notice. Just stick your tongue out and look in the mirror. You will see your tongue have a ripple like movement. Atrophy is also pretty evident as your tongue will have a smaller and uneven look to it. There should have been paraspinal muscle involvement (muscles near the spine). If these were negative, then you do not have ALS. If you had true bulbar signs without EMG changes, then you do not have ALS. It is possible that you could have bulbar problems without other muscles being involved and have ALS. It has not been reported in the literature, nor have we seen it here at the Cleveland Clinic. So, you would be the first. (Unlikely!). If you truely had bulbar ALS, you should have alot of difficulty chewing, swallowing and you ought be be drooling uncontrolled into your clothing. You would have lost weight also.
Very good. I would be honored to have you as my physician. Description is the key that unlocks the door between patient and doctor. You have it. I swear... I had to make a mad dash for the mirror and have a look at my troubled 7th cranial. I'm clear. No atrophy, just minute drooling because of the paralysis. That's getting better via facial exercise. Very good, doc.
Get over to the Barrow Institute like Doc RPS informed. If you have ALS, they are the people who will tell you true. I hope... I sincerely hope that you are negative on this horrid, anguishing, progressive- not to mention that hated word, ANXIETY-creating illness. If you must pay for another EMG... lay your money down at Barrow. Put an end to all your questions. As it stands now, research without proper guidance creates fear within. I know. I've been there. Imagine my chagrine when I discovered that my form of Neurofibromatosis was one in a half million people, not 1 in 4,000 or 1 in 40,000, but... (Talk about being alone in this world!) Please... go to Barrow then keep us informed. Support can be beautiful.
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