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I thank you all very much for your replies. I'll pursue answers at Mayo and hope for the best. Again, I appreciate your input very much.
 
I do have to revisit something said in several replies on various threads. Particularly regarding pain and cramping. It seems that pain and cramping are symptoms that when brought up on here are told to not be ALS related. However, I've read on multiple threads as well on here that throat pain was a symptom before swallowing and speech issues occurred. Also, the neurologist I've seen gave me the ALS official description and it states that up to some 20 percent feel pain as initial symptoms as well as some 15 percent also experience parathesias initially. It is interesting that I've had pains in my throat for weeks now and twitches on my tongue but now everytime I swallow there is food remaining at the back of my tongue as a sort of residue that I can feel but cannot get down. Has this happened to anyone else?
 
No, no one here originally presented with throat pain, food residue & tongue twitches, nor have they had the good fortune of two normal EMG's. You need to stop reading this forum and start pursuing other reasons for your problems instead of obsessing over ALS.
 
Uh no. That thread involved a CALS and a PALS discussing laryngospasm a year or so after diagnosis and then someone who has been diagnosed for months also about not being able to swallow completely and getting laryngospasm. This is not a thread with people saying they had throat pain before swallowing or speech as you allege. Please stop reaching here. Let us know what Mayo says
 
Ditto the no from Nikki.

Laryngospasms are not feeling pain in the throat, you are pushing square pegs into round holes I'm afraid.
 
Hi all again, I had another quick EMG that redid some of the legs and then added in only the tongue. Nothing was abnormal at this point. Are there other parts of the face and throat they can do for bulbar EMG? I have the upcoming appointment with Mayo and I want to make sure I have all my requests in order so they can either find this disease or are thorough enough so that I have no doubt that nothing was missed. So, since I have swallowing issues and twitches and pain around my throat and neck are there any specific muscles I should request? I see the EMG guy before the doctor so I'm not sure how this goes with Mayo but hopefully not just a quick standard set of muscles because at this point I feel I've been through that enough. Not sure what causes the reluctance of the doctors to do muscles not on the "agenda". Also, the earliest symptoms I had were around my ribcage and throughout my back. Have a hiatal hernia now as well as some pain and while breathing as well as headaches in the mornings. Is there a way to do the diaphragm in an EMG? Has anyone had that before?
 
It sounds to me like you have way to much random "doctoring" going on, honestly. It is easy to have this happen with neuro symptoms. I am in Minnesota also, so I know how it can work here with our abundance of medical options, and how these Doctors can start bouncing off each other. The first thing is it sounds like you are having was too many EMG's and mini EMG's. I don't believe for a minute you have ALS. The symptoms don't add up and the EMG's all coming back normal pretty much ends that speculation, or should have a long time ago.

Sounds like you are hooked up with Mayo now. Okay. If however they give you another "wait and see" or fail to definitely rule out ALS, I suggest you get yourself hooked up with The University of Minnesota ALS Clinic. That is our clinic and I found them to be fast and efficient, which honestly is more than I can say for Mayo no matter how knowlegable they are. AS to your EMG question, it sounds like you should not have further testing at all let alone requesting specific parts. Again, if Mayo does not send you away ALS cleared for good, please go to the U of M. Meanwhile know that your odds of having ALS at that point with normal EMG's are just about zero.
 
Minnguy

When I was referred by my rheumatologist for my first EMG no notion of mnd had crossed my mind, I was only supposed to have my ankle checked. After the first needle insertion the EMG guy excused himself from the room briefly then came back and said he would like to extend the test. He then tested several areas in both arms and legs back ribcage shoulders neck and jaw. I had to wait two weeks for the results but the report came back saying he had found abnormalities consistent with anterior horn cell disease in all areas tested.

Don't try to second guess your doctor, if you are going to a specialist centre they are experts they will know where to test. It is very important that you trust them to do the job correctly if you try to lead the diagnosis you can confuse things and get in the way of a correct diagnosis.

Wendy
 
Hi Lenore - Thanks for the reply and hope you are enjoying the beautiful fall weather. Nice to meet another Minnesotan (although I'm originally from across the state line to the east so still bleed green and gold). Yeah, the way this whole thing started out is why I bounced around. Plus I have other health issues that I thought were causing this but to no avail. Long story short though, about 2 months after I had my three mercury fillings replaced (Another whole topic here)... I started having odd symptoms. Symptoms really started with more sensory nerve stuff back in June. Then in July/August it morphed into leg and diaphragm twitching (plus hiatal hernia....weak diaphragm) and "weak" toes and throat muscles and swallowing concerns. So the timing of the EMGs is what is concerning me and why I continue to pursue them. (Also the muscles that were or weren't needled). Dr. Kelkar (Minn Clin of Neuro) used to direct the ALS clinic at UofM I believe and he was telling me that if you have an EMG 6 months after symptom start then you should be in the clear. Previously, Jacoby (NORAN) said if you have symptoms and clean EMG then you don't have ALS. As you can see, the "when symptoms started" is a little vague and then the professional opinions on EMGs vary widely. Even the descriptions of what symptoms are can be misleading given I seem to describe stiffness and cramping as pain but then on forums pain is kind of pointed away from ALS because it must be sensory...etc. Not sure if you see where I am coming from? I'm a pretty technical/engineering type person so the devil is always in the details for me.

BTW - I tried to get into UofM ALS clinic but you can only see someone there if you are referred there when you have a diagnosis. At least that is what I was told. I can try an get into UM through gastro referral I guess if Mayo turns out to be another bust but hey, they are the #1 neurology clinic in the world per their banners in the hall. I should have high expectations. Any thoughts on which doctor to see at UM if I eventually get a referral?
 
See Dr Walk if you get referred. I agree with the mods though, stop worrying about ALS and stop posting unless you get new information that points to ALS. You will not get that info though- no ALS here I would bet a months pay on it.
 
Thanks Lenore.
I apologize to you all if I offended anyone or was insulting.
 
They are pretty smart and know where to test, regardless of where you think they should.
 
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