monster
Distinguished member
- Joined
- Apr 30, 2011
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- 126
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- USA
I am here for a update and to ask if there is anyone like me. I will try to make it short but I have a long history.
I've experienced some symptoms since 2006- lightheadedness, palps, and racing heart. My GP noted brisk reflexes and said everything was stress. My jerks/body twitches started a few months later.
Throughout the years, very slowly, more symptoms started. Finally in 2009 my GP sent me to a neurologist. He also noted brisk reflexes.
2011-My regular neurologist did more testing. I have a mutation of SPG11 (of unknown significance). He told me he believes I have ALS or PLS pending emg, then sent me to a ALS clinic.
(2011)-March/April fasciculations started.
(2011)-May. I was evaluated at the ALS clinic. I was told nothing was wrong with me, I had just as much chance as developing ALS as she did. Clinical exam found hyperreflexia in my knees, but told it was normal. Emg found a occasional fasci in right deltoid. Diagnosed with BFS, mild entrapped nerve, and dysautonomia.
(2012)- reevaluated at clinic. Found Hoffman, ? Jaw jerk, and hyperreflexia in all limbs now. The emg picked up fasci in more muscles in my left arm this time. Diagnosed with BFS. I was concerned so she sent me for a second opinion with a more experienced ALS specialist.
(Oct. 2012)- new specialist noted jaw jerk, hyperreflexia and Hoffman. (Told normal exam). He said I didn't have ALS or pls. There was no disease in progress. Told me I had BFS. I don't need any follow up with any Als specialist.
(May 2013)-reevaluation at Als clinic. I was told this time I have "upper motor neuron syndrome", she agrees with the second opinion specialist. (The second opinion doctor never told me this!) She still reassured me I was fine, and to come back for every 6 months for exams. I was asking more question, then she said she didn't know if I was fine, and would send me for a third opinion with a 'brilliant' Nueuromuscular doctor.
Aug & September 2013. Third specialist, Dr. B, on his first appt noted hyperreflexia and jaw jerk.
One month later, with his second exam, the day of the emg, he noted a normal exam and normal emg. (NO fasci now seen) Told me there's nothing wrong with me, I had just as much chance as developing ALS as he did (seems they all like that term) and there is no disease in progress.
I have hyperreflexia, jaw jerk, & Hoffman. The rest of my clinical exams are normal.
I know I am getting weaker (for years) in my arms and legs, but I have no clinical weakness. I have myoclonus jerks daily, I can't build muscles when exercising daily (I'm getting flabby, lumpy feeling, and losing muscles mass in a lot of places), my bones always crack, my legs never feel relaxed and quiver, I get out of breath easily, & I have fasci everywhere.
I feel there is a disease in progress, but it has not yet fully blossomed to the 'criteria' state for them to call it ALS.
My hometown neurologist and some of my other regular doctors seem very concerned, but the neuromuscular specialist say I'm fine! It just seems very strange.
I also don't understand how 2011 & 2012 emg's picked up fasci and 2013 didn't. Emg's were on one leg, one arm, and paraspinal.
So is there anyone similar to me?Symptoms for a long time (7 years for me), some progression, Hoffman, jaw jerk, & hyperreflexia, and who did not develop this disease?
I tested out of everything! The neuromuscular doctors are just looking for progression now.
I try to think positive and keep going, but it's getting hard at times.
I've experienced some symptoms since 2006- lightheadedness, palps, and racing heart. My GP noted brisk reflexes and said everything was stress. My jerks/body twitches started a few months later.
Throughout the years, very slowly, more symptoms started. Finally in 2009 my GP sent me to a neurologist. He also noted brisk reflexes.
2011-My regular neurologist did more testing. I have a mutation of SPG11 (of unknown significance). He told me he believes I have ALS or PLS pending emg, then sent me to a ALS clinic.
(2011)-March/April fasciculations started.
(2011)-May. I was evaluated at the ALS clinic. I was told nothing was wrong with me, I had just as much chance as developing ALS as she did. Clinical exam found hyperreflexia in my knees, but told it was normal. Emg found a occasional fasci in right deltoid. Diagnosed with BFS, mild entrapped nerve, and dysautonomia.
(2012)- reevaluated at clinic. Found Hoffman, ? Jaw jerk, and hyperreflexia in all limbs now. The emg picked up fasci in more muscles in my left arm this time. Diagnosed with BFS. I was concerned so she sent me for a second opinion with a more experienced ALS specialist.
(Oct. 2012)- new specialist noted jaw jerk, hyperreflexia and Hoffman. (Told normal exam). He said I didn't have ALS or pls. There was no disease in progress. Told me I had BFS. I don't need any follow up with any Als specialist.
(May 2013)-reevaluation at Als clinic. I was told this time I have "upper motor neuron syndrome", she agrees with the second opinion specialist. (The second opinion doctor never told me this!) She still reassured me I was fine, and to come back for every 6 months for exams. I was asking more question, then she said she didn't know if I was fine, and would send me for a third opinion with a 'brilliant' Nueuromuscular doctor.
Aug & September 2013. Third specialist, Dr. B, on his first appt noted hyperreflexia and jaw jerk.
One month later, with his second exam, the day of the emg, he noted a normal exam and normal emg. (NO fasci now seen) Told me there's nothing wrong with me, I had just as much chance as developing ALS as he did (seems they all like that term) and there is no disease in progress.
I have hyperreflexia, jaw jerk, & Hoffman. The rest of my clinical exams are normal.
I know I am getting weaker (for years) in my arms and legs, but I have no clinical weakness. I have myoclonus jerks daily, I can't build muscles when exercising daily (I'm getting flabby, lumpy feeling, and losing muscles mass in a lot of places), my bones always crack, my legs never feel relaxed and quiver, I get out of breath easily, & I have fasci everywhere.
I feel there is a disease in progress, but it has not yet fully blossomed to the 'criteria' state for them to call it ALS.
My hometown neurologist and some of my other regular doctors seem very concerned, but the neuromuscular specialist say I'm fine! It just seems very strange.
I also don't understand how 2011 & 2012 emg's picked up fasci and 2013 didn't. Emg's were on one leg, one arm, and paraspinal.
So is there anyone similar to me?Symptoms for a long time (7 years for me), some progression, Hoffman, jaw jerk, & hyperreflexia, and who did not develop this disease?
I tested out of everything! The neuromuscular doctors are just looking for progression now.
I try to think positive and keep going, but it's getting hard at times.