Need insight on hyper reflexes with fasiculations.

[Festus]

First let me say I am grateful for this website and the willingness for those with ALS to help those that are in the process of determining if we have ALS. Your generosity is just awe inspiring to me. If I may briefly say where I am at. I am a 45 year old male. About 1 year and 6 months ago I received my one and only Hepatitis vaccine. This may not be relevant but I wanted to add it in here. 1 year and 3 months ago, I volunteered to do double duty and mow a friends yard. I overdid it and from that day forward I have suffered from muscle fasiculations. They may have started in my calves but since then they jump randomly over nearly every square inch of my body sporadically. However, they never leave my calves. These are for the most part large twitches easily seen by the naked eye. As an example, if you were to look at my calf muscle, you would see large jumps in three different areas regularly. In the past i might get the occaisional calf twitches after jogging but they went away, however these new twitches never go away. Finally, about 10 months ago I went to a neurologist. I had told him I had read up on benign fasiculation syndrome and hoped that is what it was. He examined me for strength, reflexes and did not indicate anything else unusual. He did have me do bloodwork to check for things such magnesium, calcium, potassium and thyroid. All normal. I do have hypothroidism but I take medicine and so I tested in the normal range. He mentioned an EMG at the time but since I heard it was unpleasant and because I had hoped I just had BFS, I did not take the test. Fast forward to this past week and my return visit to see the neurologist. I went there not stressed, just hoping he might be able to prescribe medicine for the BFS or maybe refer me to someone that could help me with the BFS. I noticed he spent a lot of time on my reflexes. I saw my leg pop way up so I just figured it was a good thing. He then checked my arm reflexes and then again my knees. He went to his computer and mumbled something about Hyperreflexia and ALS. It did not really register because I proceeded to ask him a question that I had about my concussion history. He interrupted that question and said words to the effect, "you have bigger problems to worry about, I am sending you to a specialist who knows more about what you are dealing with". I walked out of his office and then the reality of what he said started to kick in. Terror started to kick in. How had I gone from something benign to something life threatening in the blink of an eye. I have read this board thoroughly and there are a lot of mixed messages about fasiculations without any significant weakness. I want to believe that hopefully I could not have fasiculations without weakness for over a year and still have ALS. However I now understand that with the hyper reflex, I now have both an upper and lower motor sign...the hallmark for diagnosing ALS. I have been destroyed this weekend. I called my father and wept and explained that I probably am facing a fatal disease. I guess what I am wondering is could there be an innocent reason to have hyperreflexia. I have researched it but I cannot seem to find a simple answer. As best as I can tell, I still do not have weakness or atrophy although my legs feel fatigued...probably from 24/7 twitching. As an aside, i wonder if having the hepatitis vaccine could trigger ALS. Any thoughts are appreciated. You are awesome people to selflessly help others.

 

[affected]

Hi festus

Firstly would you mind editing your post to make paragraphs? It's really hard for me to read that big chunk of text, and many of our PALS will not make it through it.

I am finding it very hard to follow this doctors reasoning.

What you display is not hallmark upper and lower symptoms at all.

Hyper reflexes alone mean nothing really, just like twitches mean nothing.

Forget all you have been reading and go to the sticky title READ BEFORE POSTING. That one is our official position and clearly explains many things.

I'm sure if this neuro was actually an ALS specialist he would have said nothing of the sort without explaining that he had found that would support it.

Get to an ALS specialist and keep your mind open, and ask him why it could be ALS only if he mentions it. If not, go with the testing he orders and see what he finds.

Honestly twitching and some reflexes - not what would alert anyone to ALS.

 

[Festus]

Thanks for the response. Could you please tell me where the edit option is...or should I just copy and paste into a reply...

 

[Festus]

Since I cannot find an "edit" option here is a repost with paragraphs:

First let me say I am grateful for this website and the willingness for those with ALS to help those that are in the process of determining if we have ALS. Your generosity is just awe inspiring to me.

If I may briefly say where I am at. I am a 45 year old male. About 1 year and 6 months ago I received my one and only Hepatitis vaccine shot. This may not be relevant but I wanted to add it in here. 1 year and 3 months ago, I volunteered to do double duty and mow a friends yard. I overdid it and from that day forward I have suffered from muscle fasiculations.

They may have started in my calves but since then they jump randomly over nearly every square inch of my body sporadically. However, they never leave my calves. These are for the most part large twitches easily seen by the naked eye. As an example, if you were to look at my calf muscle, you would see large jumps in three different areas regularly. In the past i might get the occaisional calf twitches after jogging but they went away, however these new twitches never go away.

Finally, about 10 months ago I went to a neurologist. I had told him I had read up on benign fasiculation syndrome and hoped that is what it was. He examined me for strength, reflexes and did not indicate anything else unusual...other than the twitching of course. He did have me do bloodwork to check for things such as magnesium, calcium, potassium and thyroid. All normal. I do have hypothroidism but I take medicine and so I tested in the normal range. He mentioned an EMG at the time but since I heard it was unpleasant and because I had hoped I just had BFS, I did not take the test.

Fast forward to this past week and my return visit to see the neurologist. I went there not stressed, just hoping he might be able to prescribe medicine for the BFS or maybe refer me to someone that could help me with the BFS. I noticed he spent a lot of time on my reflexes. I saw my leg pop way up so I just figured it was a good thing. He then checked my arm reflexes and then again my knees. He went to his computer and mumbled something about Hyperreflexia and ALS. It did not really register because I proceeded to ask him a question that I had about my concussion history. He interrupted that question and said words to the effect, "you have bigger problems to worry about, I am sending you to a specialist who knows more about what you are dealing with".

I walked out of his office and then the reality of what he said started to kick in. Terror started to kick in. How had I gone from something benign to something life threatening in the blink of an eye. I have read this board thoroughly and there are a lot of mixed messages about fasiculations without any significant weakness. I want to believe that hopefully I could not have fasiculations without weakness for over a year and still have ALS. However I now understand that with the hyper reflex, I now have both an upper and lower motor sign...the hallmark for diagnosing ALS. I have been destroyed this weekend. I called my father and wept and explained that I am probably facing a fatal disease.

So in summary, because of continuous body wide fasciculations and hyperreflexes, my neurologist is sending me out of town to test for ALS.

I guess what I am wondering is could there be an innocent reason to have both hyperreflexia and fasiculations at the same time. I have researched it but I cannot seem to find a simple answer. As best as I can tell, I still do not have weakness or atrophy although my legs feel fatigued...probably from the 24/7 twitching. As an aside, i wonder if having the hepatitis vaccine could trigger ALS. Any thoughts are appreciated. You are awesome people to selflessly help others.

 

[Festus]

Okay, I found the "read before posting" link and I see that one of the biggest three signs is hyperreflexia which I have along with fasciculations. That I am guessing is why the neuro is concerned. Apparently I did not have hyperreflexia 6 months ago and now I do. It is definitely why I am concerned even though I do not think I have much if any weakness or atrophy. He really did not test for weakness or mention that he saw any atrophy on this visit. But he did say he was concerned about ALS because of the hyperreflexia.

 

[affected]

Please don't post the same thing twice again, but thanks for trying to fix it.


Here is the link to the sticky.

https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html

 

[BlueandGold]

It's not ALS until it is. Most of us went through a year to two years of testing before we were diagnosed. Weakness is the hallmark sign. I twitched for well over a year, body wide before I was diagnosed. However during that time my left hand became weaker with each passing month and my speech began being affected within 9 months.

Wait on a neuromuscular specialist. The EMG will show it if it is there.

Vince

 

[Festus]

Sorry for the repost but I don't think I can edit the original post to add spaces between paragraphs although i see where comments after can be edited. My apologies.

 

[Festus]

Thank you Vince. Do you mind me asking how much time between the initial appearance of the body wide twitching and when you first noticed the weakness in your left hand. Also, when you had the body wide twitches before the weakness in your hand, did you notice that exercising seemed to enhance them. While my twitching goes on non stop, I have noticed them the worst in my calves and after I exercise they seem to really go nuts...or at least my mind senses them more...whether they are physically and visually worse, I am not sure. However, they will seem to get extra hyper for a few days after exercise.

 

[Nikki J]

Thank you for the second post. I believe the edit time is limited. Possibly an hour? Time may vary with seniority too.

Hyperreflexia without other findings can be normal in anyone and is common in the anxious. Twitches do not count as a lower motor sign. I am baffled by the neuro's response. I am glad you are going elsewhere simply because if that is all he found and he said ALS I would not feel comfortable with that doctor. I would be requesting my clinical notes. Your next doctor will want them anyway but I would want to know what he documented

. Many with a bfs diagnosis report all of your symptoms. I do not know any association between any of the hepatitis vaccines and ALS

 

[Festus]

Thank you Nikki. I figured the vaccine was unlikely it just seemed to coincide timing wise. This neurologist did not say definitively it was ALS but he said hyperreflexia is a symptom of ALS or words to that effect. That along with my year long non stop twitching is apparently why he is sending me to a specialist as far as I know. That is why I am alarmed. He only checked my reflexes. He did not do strength tests. As far as I can tell I do not have any visual signs of atrophy so if he observed that, he did not tell me. The only other thing he did was examine my pupils because they are unequal but that has been a condition I have had for decades. He had me in and out in about 10 minutes and that is just about all he said.

 

[BlueandGold]

Festus,

From the beginning of my twitching I began seeing doctors, primary care, regular neurologists, endocrinologists you name it, I saw them. My twitching did not get worse with exercise. They were always there. Also, at the same time as the twitching started I developed cramping. Not traditional cramping most people get when exercising but cramping from simple movements. Opening a bottle would cause my hand to cramp and my fingers to draw into my palm. Putting on my shoes, bending over, would cause cramps in my abdomen. I'd get them everywhere and every day. Of course like most newbies, searching for what is wrong with us, I did strength tests all the time.

Since I noticed at the beginning my left grip was not what it was before, I bought a pair of those grip strentheners (don't know what they are called) and tested hou many times I could squeeze with my right and how many with my left. 1st month, 50 with my right and 30 with my left. No big deal because I'm right hand dominant. 2nd month, 50 with my right hand and 20 with my left. At this time I noticed my left thenar muscle was much smaller than my right. The weakness was there from practically the beginning and the atrophy began showing as well.

Took me exactly one year from my first symptoms before I was diagnosed. I'll say it again, weakness, and I'm not talking about perceived weakness or people that say I "feel" weak, I'm talking true weakness. Not being able to do what you once could and it only gets worse. Not bad one week and better the next. Just keeps going downhill.

Vince

 

[KimT]

Mine was similar to Vince's. Left ankle twisted for no apparent reason. Then I fell. I had weakness before the twitches started but once they started, they were local to my foot, then spread to my calf, then my thigh, then my glutes (all of left side.) Then Left hand weakness, then left hand twitches. It took them over a year to go from "possible" to "probable" Now I twitch all over but it never left the original place (left bottom of foot and left calf.) I had an abnormal EMG from the start (December 2014.)

My advice is for you go to to an ALS specialist and get it ruled out.

Twitches and hyper-reflexes together mean nothing. My ALS doctor has both. He was so unconcerned, he never even had an EMG.

 

[Festus]

Vince, if I read your post correct, you said that you noticed some weakness near the very beginning of when you first started the twitching...is that correct. (sorry the question mark on my computer is broken)

I also have a lot of cramping but I have a lifetime history of cramping a lot. But it has been worse since all the twitching started. It sounds like maybe you had cramping everyday. I am susceptible to cramping at any given moment but usually I have relatively cramp free days 75% of the time with the other 25% with a lot of cramps...mostly in my hands and feet.

Thank you for the further explanation of "weakness" vs. "perceived weakness". If I have weakness right now, I do not think it is much. Would it be fair to say that if I get an EMG done and it comes out "clean", then it is not ALS or is it not that simple. (again no question mark...ugh)

 

[Festus]

Thank you Kim. I appreciate you sharing that your doctor actually twitches with hyperreflexia without any big issues. I have become a little more alarmed after reading about clonus. Although no one has ever tested me for clonus I know that I have developed ankle clonus recently. Of course when I read the medical websites one of the first causes for clonus that they list is ALS. Over the past several months on 3 or so occasions when I woke up in the morning while lying in bed I would stretch my legs out under the covers and my ankle would rock uncontrollably for a few moments. Since I was half asleep I could not say if it was just one ankle or both. When I read about this symptom online, it is nothing but negative and alarming. I think that is why I have gone from deeply concerned to near panic.