monster
Distinguished member
- Joined
- Apr 30, 2011
- Messages
- 126
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- NJ
- City
- USA
My old thread is closed again so I am updating.
My symptoms started in 2006. They were mild and would come and go. Some of my symptoms still are like that.
I've have been followed by a Als clinic since 2011 at which time I had hyperreflexia in my knees everything else was normal. My emg picked up occasional fasci only in 2011 and 2012, reassured NOTHING was wrong with me. I was diagnosed with BFS and dysautonomia.
2012 I was sent for a second opinion to a more experienced neuromuscular doctor. I was told I had a normal exam even with a Hoffman, jaw jerk, and hyperreflexia now. I was reassured, again, there was no disease in progress. I had anxiety and BFS.
2013 my regular/original ALS specialist now said I had umn syndrome. There is no change in my clinical exam. I still have a Hoffman, hyperreflexia, and a ? Jaw jerk. She referred me out of state to another ALS specialist for a THIRD opinion.
This specialist said my emg and clinical COMPLETELY clean/normal. (Wrote this in his doctors notes too) Again it seemed strange since i know I still have hyperreflexia, Hoffman, and sometimes a jaw jerk. He also stated his emg picked up NO fasci. (Which doesn't seem truthful).
2014-my regular/original specialist asked if my third opinion doctor agreed with the umn syndrome DIagnosis. I said no, he said I was completely fine. He saw no evidence of any mnd in progress. I told her I was confused by all this now and I feel that I've been misled and lied to. She explained that he was 'comforting' me but they all (the doctors) understand each other. I think the patient should understand too, don't you?
On my latest exam, by her, I didn't have a Hoffman or clonus. She said I was getting better. She checked for a babinski (4 times in this visit) and said it was now present twice and not present twice. This was the first time this was ever present. I do not believe I am getting better when my symptoms are worse.
I explained my symptoms to date, which are everywhere at different degrees. My worse symptoms now is my leg and arm. I'm limping since late January now and resting my arms to blow dry my hair. My leg feels dead and tingles sometimes. This has been happening, mildly, on/off for a few years. She said I do have umn syndrome/disease and there is no cure.
She said it will NOT progress and it will NOT turn into Als, not even UMN dominate ALS. (I don't know how she knows this-words of 'comfort' maybe?) I told her the third special told me I would have Als not pls, if I had anything, since I have fasci. She said technically he's right because fasci are LMN but mine are benign.
I'm suppose to go back every 6 months to check progression.
At this point i try to live my life as best i can. I am getting weaker (not clinical) and feel progression. The doctors explanations still confuse me. I don't know who to believe or trust. How can I? They all contradict each other.
Has anyone else experienced a situation like this? It's so frustrating.
My symptoms started in 2006. They were mild and would come and go. Some of my symptoms still are like that.
I've have been followed by a Als clinic since 2011 at which time I had hyperreflexia in my knees everything else was normal. My emg picked up occasional fasci only in 2011 and 2012, reassured NOTHING was wrong with me. I was diagnosed with BFS and dysautonomia.
2012 I was sent for a second opinion to a more experienced neuromuscular doctor. I was told I had a normal exam even with a Hoffman, jaw jerk, and hyperreflexia now. I was reassured, again, there was no disease in progress. I had anxiety and BFS.
2013 my regular/original ALS specialist now said I had umn syndrome. There is no change in my clinical exam. I still have a Hoffman, hyperreflexia, and a ? Jaw jerk. She referred me out of state to another ALS specialist for a THIRD opinion.
This specialist said my emg and clinical COMPLETELY clean/normal. (Wrote this in his doctors notes too) Again it seemed strange since i know I still have hyperreflexia, Hoffman, and sometimes a jaw jerk. He also stated his emg picked up NO fasci. (Which doesn't seem truthful).
2014-my regular/original specialist asked if my third opinion doctor agreed with the umn syndrome DIagnosis. I said no, he said I was completely fine. He saw no evidence of any mnd in progress. I told her I was confused by all this now and I feel that I've been misled and lied to. She explained that he was 'comforting' me but they all (the doctors) understand each other. I think the patient should understand too, don't you?
On my latest exam, by her, I didn't have a Hoffman or clonus. She said I was getting better. She checked for a babinski (4 times in this visit) and said it was now present twice and not present twice. This was the first time this was ever present. I do not believe I am getting better when my symptoms are worse.
I explained my symptoms to date, which are everywhere at different degrees. My worse symptoms now is my leg and arm. I'm limping since late January now and resting my arms to blow dry my hair. My leg feels dead and tingles sometimes. This has been happening, mildly, on/off for a few years. She said I do have umn syndrome/disease and there is no cure.
She said it will NOT progress and it will NOT turn into Als, not even UMN dominate ALS. (I don't know how she knows this-words of 'comfort' maybe?) I told her the third special told me I would have Als not pls, if I had anything, since I have fasci. She said technically he's right because fasci are LMN but mine are benign.
I'm suppose to go back every 6 months to check progression.
At this point i try to live my life as best i can. I am getting weaker (not clinical) and feel progression. The doctors explanations still confuse me. I don't know who to believe or trust. How can I? They all contradict each other.
Has anyone else experienced a situation like this? It's so frustrating.