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monster

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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.
 
Have you had a muscle biopsy? I'm 7 years into mine. I don't know what Hoffman or jaw jerk is and I don't know if I have brisk reflexes. I just don't ask my dr about those things. I have had emg/nvc several times and I have neuropathy in my feet. Maybe it is a MD and not als.
 
Hi Monster,

I have been hyperreflexic for years. My doctor found my brisk reflexes quite a while ago during a regular health checkup. I kicked like a mule when he tapped my knees. He said it was "concerning" but left it at that. I never thought anything about it, just figured my reflexes were a bit jumpy.

Fast forward a few years later to when I started feeling hand fatigue, muscle spasms, tingling in my hand, and muscle twitching this past spring, I saw the ALS doctor and she noted brisk reflexes in both my knees just like my other doctor did. She also said I have a bilateral positive Hoffman's sign. Now from what I've learned about this, a unilateral positive Hoffman's can be completely normal. If both sides have the Hoffman's it is considered within the normal range - most likely cause is anxiety. It's only when one side has Hoffman's and the other doesn't that it raises questions about a neurological condition.

The one sided Hoffman's was what pointed my doctor towards MS. After that appointment at the ALS clinic, I was sent straight over to the MS clinic and the rest is history.

And as far as the jaw jerk, from what I have learned, unless it is also accompanied with clinical weakness, jaw jerk is considered to be of no significance.
 
Well, not exactly the same story, but there are some similar things.

My arm weakness started around 2000. I went to a neuro, he said I was okay. Then for years no progression, untill 2007. My arms became weaker, but I also got soms problems with my tongue, fingers and legs. Not something noticeable for neuro's, unfortunately. It's just a heavy, tired feeling. I'm able to do everything, I just get tired and need to rest more.

But in may 2013 I got fasciculations. Everywhere, from the start they were in my whole body. I also got spasms (jerks) in july. And pins/needles. I decided to wait and see for a while, but I was worried. Half october I started to experience salivation. I went to the docter and she send me to the neuro. The neuro exam was okay, I only had some hyperreflex, but they sad it was normal because they didn't find any weakness or other symptoms. Still, they want me to de an EMG.

I'm still waiting for that. When I was visiting the neuro, I just had an operation at my leg. So the EMG couldn't be done right away. I hope I can do it in december, but I didn't get the invitation yet.

So, I also have symptoms for 10 years now, but untill now not real weakness of noticeable problems for neuro's. I'm waiting for the EMG. I do notice progression tough, the last week I have been experiencing problems with swalloing, which I had never had before.

So yes, I'm a bit nervous.... but still I try to get it out of my mind untill the EMG, and then I hope to hear more.

If the EMG is okay, I think I will be happy.

Good luck.
 
Thank you everyone for your replies and telling me a little of your personal history.

Vicki, I have not had a muscle biopsy. The neuromuscular doctor mentioned it on my first appt then didn't bring it up after that.

Goolia75, We are similar in some ways. My reflexes are extremely hyper too, but I'm now hyperreflexic everywhere. I recently been showing unsustained clonus (2 beats).

The Hoffman was unilateral first then turned bilateral. The neuromuscular doctor told me it could normal for 15% of people. MS was ruled out with me.

Did you have a EMG? Do you have fasci?

Antologia, yes, I also see we have similar things in common.

I have the same feeling of weakness. My neuros call it muscle fatigue. I adjust, rest then more on.

I'll be praying that your emg is clean. Please let us know how you make out. Good luck to you.
 
Maybe you should talk to your dr about the muscle bio. After 5 years of testing and retesting it is what gave me my answers.
 
I'm sorry I do not get that. You posted some time ago that a neurosurgeon told you that you had ALS. So I hope and assume he was wrong and it was not confirmed later, right?
 
I have my regular 6 month check at the clinic in December. I'll see what she says.
Thanks for your suggestions.
 
Bliz- I went to a neurosurgeon, for something else, in 2011. After that
Exam he found a jaw jerk and told me I had Als, go see a neurologist.

That's how i originally ended up posting here. I went to my neurologist, after more testing he sent me
To the Als clinic.......see above.....
 
Yes, the clinic told me I had BFS, dysautonomia, and mild entrapped nerve.
Then my story goes on....
 
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