Hello All,
I have visited this forum for quite awhile. I admire the courage you all exhibit and the help you are to each other. I am new to this and not sure if I am even posting in the right place. I have some questions. This is my story:
I'm a 56 year old wife, mother of 4, grandmother of 5. In Feb 2011 I went to the eye doctor and mentioned to him I was having trouble opening my left eye in the mornings. He said that could be a symptom of MG, MD or a tumor. He kind of "blew it off" so I did too far awhile. I started having other symptoms: weak legs esp when climbing steps, hoarse voice, some swallowing issues, excessive drooling at night. I decided I needed to mention all this to my GP. He referred me to a neuro. This is how that visit went:
He had me fold my arms and then he pushed down on them. He then pushed on the back of my head/neck. He had me follow his fingers with my eyes. End of exam....no testing of any reflexes, etc. He ordered an MRI of brain and eye area, blood work for MG and an EMG. He said the MRI was normal----no tumor, no MS. Even though my paperwork said EMG, he just did a nerve conduction study. No needles, just an electrode on my right arm, even though I told him the left side was where I had the most problems. The whole thing took maybe 5-10 minutes. He said all was fine. Told me to come back in 2 weeks for results of blood work. Not sure why I had to go back, could have told me on phone. Said blood work was fine---no MG. He said I don't think your problems are neuro. I told him other symptoms I was having: twitches, swallowing issues, weakness in legs and muscle pain with the slightest exertion. He said that sounds normal why don't you go for some PT. When I asked about things he hadn't really tested for he said "You don't have ALS. He said I've seen hundreds of ALS patients over the years. If you did your hands would be all curled under. I said so pain is not associated with ALS. He unconvincingly shook his head no. As he was leaving the room he said wait until your tongue is twitching and you better hope you don't have ALS because it is a very debilitating disease. I was smart enough to know that! I understand he has had training and can recognize things but I felt like he wasn't listening to me or trying to find the root of my problems. Needless to say I wasn't real pleased with this visit and didn't have much confidence in him. I got the name of another neuro who came highly recommended and asked my GP for a referral. She refused to see me because I had seen the other neuro.
So fast forward to now: I was able to get a referral with a neuro at a teaching hospital nearby. She specializes in neuromuscular disease, EMG, and ALS. There is an ALS clinic at this hospital. My appointment is Nov 29th. I don't know if I am headed down the right path, but I am hoping someone can tell me what I am dealing with or not dealing with.
Throughout all this (all summer) I have experienced just about every muscular and nerve feeling you can experience----tingling, burning, aching, numbness, etc.
Right now these are my most pressing symptoms:
twitches all over my body, usually quick feelings, have seen fasc on palms of my hands near thumbs, sometimes twitches are really forceful (forehead) once woke to my mouth clamping shut. Don't know if my tongue twitches,,,but definitely have issues in my mouth. Tongue burns all the time, sometimes tingles. Face muscles seem weak-----quivers like crazy with half smile
swallowing---I don't choke on food and drink (have twice on tea, seem isolated events). My swallowing issues don't seem to be tongue related. My tongue seems strong enough at this point, Problems seem to be from back of throat down. Often feels as though things are stuck or don't go down properly. Although it doesn't happen every night I do have excessive drooling. Don't notice it during the day, altho have recently noticed thicker saliva that's more difficult to swallow at times. my voice is sometimes hoarse, doesn't seem as strong sometimes but don't think I'm slurring
Pain-I have lots of pain in my neck, down my left arm into hand, some in right arm too. It is daily and sometimes constant. I did go to PT as 1st neuro suggested. He told me my neck and waist were stiff and I had little mobility in them. I knew my neck had issues. He helped a little with the mobility issues, other than that didn't see much improvement. I could do all the exercises he asked me to do (nothing strenuous) but when I got home I was in pain from what I had done. This continues to happen. When we cleaned house for Thanksgiving guests, I could do pretty much everything I needed to do but at the end of the day every muscle was hurting.
Weakness.....Is is clinical? I have no idea, but sometimes my legs feel weak and I can feel them shaking just in a standing position, my arms seem weak when reaching for things, sometimes shake putting things in frig, hands might shake holding fork, rearranging papers on the counter, etc, Sometimes when I hold my hands up a finger will just randomly wriggle. But I can button, pick up quarter, turn knobs, etc
Emotional Liability--I don't know if this is what I am experiencing or just a normal reaction to what all is going on. But I am more emotional for sure. Tends to happen when the symptoms are at their worst and I'm feeling the fear and often at mealtimes.
I have so many questions. Seems like if I have had such pain in my neck for so long that I should be having trouble holding my head up, or the swallowing issues should be developing more, or there should be things that are 'failing' Don't get me wrong I am glad they aren't progressing quicker. Just wondering if any of this sounds familiar to any of you. I read on here how long it takes many of you to get a diagnosed.
I'm wondering what I should expect at this neuro visit if I actually see someone who does things the right way. What should I say or do to get the most out of this appt?
Other things that might be relevant:
I have had thyroid issues before (in past couple of years, recently tested again) Went to endocrinologist twice who ran tests and said no need for treatment
During all of this had some gastro issues (now wonder if they are related to swallowing issues) Had scope of throat, CT scan of abdomen, colonoscopy, gall bladder tests. All they found was low functioning gall bladder, no stones. Went to nutritionist who gave me supplements that are supposed to help gall bladder, not sure if they do.
Mom was diagnosed with Parkinson's disease late in her life. Know it's not supposed to be hereditary.
I'm so sorry this is so long. I'm sure you are probably wondering why I am just now posting, when my appt is so soon. Actually I registered on this site in Aug. but just got my email confirmation to post a couple of weeks ago. It took me a while to get up my nerve to post and bother you with all of this. I promise when I post again it will NOT be a novel! I welcome any questions, advise, encouragement, help any of you have to give.
I have visited this forum for quite awhile. I admire the courage you all exhibit and the help you are to each other. I am new to this and not sure if I am even posting in the right place. I have some questions. This is my story:
I'm a 56 year old wife, mother of 4, grandmother of 5. In Feb 2011 I went to the eye doctor and mentioned to him I was having trouble opening my left eye in the mornings. He said that could be a symptom of MG, MD or a tumor. He kind of "blew it off" so I did too far awhile. I started having other symptoms: weak legs esp when climbing steps, hoarse voice, some swallowing issues, excessive drooling at night. I decided I needed to mention all this to my GP. He referred me to a neuro. This is how that visit went:
He had me fold my arms and then he pushed down on them. He then pushed on the back of my head/neck. He had me follow his fingers with my eyes. End of exam....no testing of any reflexes, etc. He ordered an MRI of brain and eye area, blood work for MG and an EMG. He said the MRI was normal----no tumor, no MS. Even though my paperwork said EMG, he just did a nerve conduction study. No needles, just an electrode on my right arm, even though I told him the left side was where I had the most problems. The whole thing took maybe 5-10 minutes. He said all was fine. Told me to come back in 2 weeks for results of blood work. Not sure why I had to go back, could have told me on phone. Said blood work was fine---no MG. He said I don't think your problems are neuro. I told him other symptoms I was having: twitches, swallowing issues, weakness in legs and muscle pain with the slightest exertion. He said that sounds normal why don't you go for some PT. When I asked about things he hadn't really tested for he said "You don't have ALS. He said I've seen hundreds of ALS patients over the years. If you did your hands would be all curled under. I said so pain is not associated with ALS. He unconvincingly shook his head no. As he was leaving the room he said wait until your tongue is twitching and you better hope you don't have ALS because it is a very debilitating disease. I was smart enough to know that! I understand he has had training and can recognize things but I felt like he wasn't listening to me or trying to find the root of my problems. Needless to say I wasn't real pleased with this visit and didn't have much confidence in him. I got the name of another neuro who came highly recommended and asked my GP for a referral. She refused to see me because I had seen the other neuro.
So fast forward to now: I was able to get a referral with a neuro at a teaching hospital nearby. She specializes in neuromuscular disease, EMG, and ALS. There is an ALS clinic at this hospital. My appointment is Nov 29th. I don't know if I am headed down the right path, but I am hoping someone can tell me what I am dealing with or not dealing with.
Throughout all this (all summer) I have experienced just about every muscular and nerve feeling you can experience----tingling, burning, aching, numbness, etc.
Right now these are my most pressing symptoms:
twitches all over my body, usually quick feelings, have seen fasc on palms of my hands near thumbs, sometimes twitches are really forceful (forehead) once woke to my mouth clamping shut. Don't know if my tongue twitches,,,but definitely have issues in my mouth. Tongue burns all the time, sometimes tingles. Face muscles seem weak-----quivers like crazy with half smile
swallowing---I don't choke on food and drink (have twice on tea, seem isolated events). My swallowing issues don't seem to be tongue related. My tongue seems strong enough at this point, Problems seem to be from back of throat down. Often feels as though things are stuck or don't go down properly. Although it doesn't happen every night I do have excessive drooling. Don't notice it during the day, altho have recently noticed thicker saliva that's more difficult to swallow at times. my voice is sometimes hoarse, doesn't seem as strong sometimes but don't think I'm slurring
Pain-I have lots of pain in my neck, down my left arm into hand, some in right arm too. It is daily and sometimes constant. I did go to PT as 1st neuro suggested. He told me my neck and waist were stiff and I had little mobility in them. I knew my neck had issues. He helped a little with the mobility issues, other than that didn't see much improvement. I could do all the exercises he asked me to do (nothing strenuous) but when I got home I was in pain from what I had done. This continues to happen. When we cleaned house for Thanksgiving guests, I could do pretty much everything I needed to do but at the end of the day every muscle was hurting.
Weakness.....Is is clinical? I have no idea, but sometimes my legs feel weak and I can feel them shaking just in a standing position, my arms seem weak when reaching for things, sometimes shake putting things in frig, hands might shake holding fork, rearranging papers on the counter, etc, Sometimes when I hold my hands up a finger will just randomly wriggle. But I can button, pick up quarter, turn knobs, etc
Emotional Liability--I don't know if this is what I am experiencing or just a normal reaction to what all is going on. But I am more emotional for sure. Tends to happen when the symptoms are at their worst and I'm feeling the fear and often at mealtimes.
I have so many questions. Seems like if I have had such pain in my neck for so long that I should be having trouble holding my head up, or the swallowing issues should be developing more, or there should be things that are 'failing' Don't get me wrong I am glad they aren't progressing quicker. Just wondering if any of this sounds familiar to any of you. I read on here how long it takes many of you to get a diagnosed.
I'm wondering what I should expect at this neuro visit if I actually see someone who does things the right way. What should I say or do to get the most out of this appt?
Other things that might be relevant:
I have had thyroid issues before (in past couple of years, recently tested again) Went to endocrinologist twice who ran tests and said no need for treatment
During all of this had some gastro issues (now wonder if they are related to swallowing issues) Had scope of throat, CT scan of abdomen, colonoscopy, gall bladder tests. All they found was low functioning gall bladder, no stones. Went to nutritionist who gave me supplements that are supposed to help gall bladder, not sure if they do.
Mom was diagnosed with Parkinson's disease late in her life. Know it's not supposed to be hereditary.
I'm so sorry this is so long. I'm sure you are probably wondering why I am just now posting, when my appt is so soon. Actually I registered on this site in Aug. but just got my email confirmation to post a couple of weeks ago. It took me a while to get up my nerve to post and bother you with all of this. I promise when I post again it will NOT be a novel! I welcome any questions, advise, encouragement, help any of you have to give.
