My twitching is getting far worse

[clewbcg]

jennibf
I got the private message from you, but it keeps saying error when I try to respond. I haven't answered a pm before. Sorry. If it doesn't go through, I'll answer you on this thread.

 

[dimd00d]

Hi chewbcg,

Excuse me for prying - Were the fasciculations the only symptom your husband was having - no reflex changes or prior weakness? And how long did it take for other symptoms to develop?

 

[clewbcg]

My husband started having some cramping in his forearms that we thought was from using the computer too much. Also, he was having cramping in his shoulder blades. He is very active at the gym and did alot of yoga, pilates and swimming. He went to a sports medicine doc about his forearms (we thought it was like tennis elbow) and when the doc saw his chest, he said he had never seen as much twitching in someone who didn't have ALS. After waiting an agonizing time to see a neuro (we saw 3), he was diagnosed with ALS based upon his emg and his reflexes. His were "brisk". THey also ruled out other things such as heavy metals, lyme disease etc. The doctor at the ALS clinic said that he was pretty sure that it was ALS, and that we just had to wait and see for the weakness to develop. The one doctor who said it couldn't be ALS based his decision upon no apparent weakness in the strength test. My PALS is unusual since it took him almost 6 months to develop any weakness at all. The first big sign was when he went to being able to do 10 pushups several times a day to 8 and then none in about a week. Now after 2 years, his shoulders are very atrophied, as are his arms and hands. He cannot lift his arms over his head. His legs are still good, but he falls more often and cannot save himself. He is also having trouble eating and swallowing. Breath is still good though. All of the last came on very fast after 1/08 and he started taking lithium. He is off that now. Hope that helps to answer your question.

Jennibf: We have cried for over 2 years at least once a day. You are not a baby at all! I hope you get good news today.

 

[chris_uk]

Hi Clewbcg

I am very very sorry to hear about your husbands diagnosed, it always gets me so down when i read something like that.

It also kind of makes everything i have read a bit more dubious, i always thought that twitching without weakness or atrophy meant nothing, but in your hubbys case this was not what happened. I mean 6 months without any weakness, i have not heard of that before.

I am still in the very early stages and as you have said my twitches look like your husbands, and the doc had told him that he has never seen that much twitching in a person who does not have ALS. :x

All very scary for me, but you will know all about being scared after what you have both been through

chris

 

[Blizna]

clewcbg: may I ask - they made ALS diagnosis just due to twitching and brisk reflexes? I mean..lot of people with BFS have brisk reflexes. Did he have positive babinsky or hoffman signs?
I guess his EMG showed fibrilations and so on.
But still cant understand he has no weakness for 6 months of twitching.

 

[clewbcg]

His diagnosed was made after an emg and alot of blood tests to rule other things out. I forget what the Hoffman and Babinsky are. Anyway, the diagnosed was based on fasciculations, brisk reflexes, emg and strength tests. Our neuro, Dr Bromberg, at the ALS clinic in Utah was the most sure based upon everything that he saw and all the negative blood tests. My PALS had twitching all over his body by the time we were diagnosed. Even so, Dr Miller in San Francisco said no way could it be ALS since he was so strong on the strength tests. This was very frustrating as we had two world renown neuros in direct disagreement. When my PALS "suddenly" lost the ability to do push ups 6 months after diagnosed, Miller said oh okay, it is ALS after all. So long story short-you can be diagnosed with ALS and without weakness. However, Bromberg does nothing but ALS all day, and apparently he knew what he was seeing. He did alot of emgs. My PALS was in very good shape and was a fanatic on eating well so maybe that helped slow down the weakness. He has continued to swim with hand paddles, but can't do yoga or pilates any more. He was doing exercises with his physical therapist designed for Parkinson patients that use "big movements" kind of like Tai Chi, I think, That has become harder for him just in the last month. Hope that helps.

 

[Blizna]

clewbcg: Im really sorry, it had to be terrible waiting time He was cramping before weakness, as I understand correctly.
Still its very rare, 6 months with widespread twitching and no weakness...are they sure with ALS in difference from disease that mimic it?

 

[chris_uk]

His diagnosed was made after an emg and alot of blood tests to rule other things out. I forget what the Hoffman and Babinsky are. Anyway, the diagnosed was based on fasciculations, brisk reflexes, emg and strength tests. Our neuro, Dr Bromberg, at the ALS clinic in Utah was the most sure based upon everything that he saw and all the negative blood tests. My PALS had twitching all over his body by the time we were diagnosed. Even so, Dr Miller in San Francisco said no way could it be ALS since he was so strong on the strength tests. This was very frustrating as we had two world renown neuros in direct disagreement. When my PALS "suddenly" lost the ability to do push ups 6 months after diagnosed, Miller said oh okay, it is ALS after all. So long story short-you can be diagnosed with ALS and without weakness. However, Bromberg does nothing but ALS all day, and apparently he knew what he was seeing. He did alot of emgs. My PALS was in very good shape and was a fanatic on eating well so maybe that helped slow down the weakness. He has continued to swim with hand paddles, but can't do yoga or pilates any more. He was doing exercises with his physical therapist designed for Parkinson patients that use "big movements" kind of like Tai Chi, I think, That has become harder for him just in the last month. Hope that helps.

I am woundering what Dr Bromberg would make of my calfs ! :x I was holding onto the hope that because i dont have weakness that i would be ok....

chris

 

[planningguy]

Clewcbg,

I apologize if this is a little off topic, but where you impressed with Dr. Bromberg overall? I saw Dr. Singleton, who is a NMD specialist in Bromberg's group. I found him to be pretty pleasant and knowledgeable, but as you mention Bromberg is considered the ALS expert. As the various specialists (rheum, ENT, etc.) are placing me back into the neuro camp, and as certain symptoms have gotten worse, I imagine I will be making a return trip to an academic research center at some point. I have a choice between SLC and Denver, being about equal distance from both (Denver's a little closer but SLC area has family).

While I'm not thinking ALS (Far too many unexplored possibilities), there is a certain peace of mind that comes from an ALS specialist in saying, "Nope I think it's something else." In talking with his nurse, other than conferences and other academic engagements, he's not too difficult to get in to see.

Thank you in advance,

Robert

 

[L4dybugg]

Chris-

I saw your video, and it looks just like what my husband Andy is doing, but with my husband, his twitches is all over his body, shoulders, back, arms & legs. But he has no pain with the twitches. They go from here to there, at different times all over his body. They sure are weird looking.
My husband has not been diagnosed yet, we are still waiting. He has cramping in his arms and legs and his neck. And now swallowing problems.

I sure do understand the not knowing, and that something is wrong. I myself have an undiagnosed condition that I have had for several years, and I am in pain almost everday. Also seeing what my husband is going through. It is hard.

I sure hope that you get some answers soon. Try to remain hopeful and calm.

My husband has been a trooper, with everything he is going through, he hardly ever complains. He keeps his mind focued on his favorite hobbies. And we lean on each other to get through. He likes to watch his hunting shows, and he likes to play his video games. This helps him to keep his mind off of his troubles. Also we have a strong faith that helps us get through. We are still trying our best to remain hopeful.

Will be praying for you. Best of luck

Lori

 

[clewbcg]

Yes we're sure its ALS

They are sure that it is ALS. It has been 2+ years since diagnosis, and no one would think my PALS has anything but ALS now. Bromberg ruled out many things that mimic because he said that looking at the total picture of my husband's symptoms that it could only be ALS. Everyone agrees that lack of weakness with twitches indicates something else. None of the neuros we saw could explain it. As they say, everybody is different. I think that it would be fair to say that if you DON'T have weakness, then its probably not ALS. I know that anyone trying to figure out their diagnosed is only hearing one thing: "twitches without weakness is ALS-aaargh". Please remember that we had many tests done, and that my husband is the exception-not the rule.

As to Dr Bromberg, we love him. We go to his clinic every 3 months. Dr Bromberg took (and still does) alot of time with us the day that he diagnosed my husband. He held both our hands and let us cry. He is also very patient with questions. When Miller said no way to ALS, he took the time to contact and discuss it with him. Ultimately, Bromberg was right.

 

[planningguy]

Thank you for the information on Dr. Bromberg. It's reassuring to know that there is such a compassionate professional in the field.

When I did some background reading on the department before my first trip to the U of U, I came across a research article he co-authored on coping issues in the decision on whether or not to use a ventilator. The abstract reflected an interest in holistic management of the patient including overall wellbeing. I just thought it was interesting to see such a pragmatic yet crucial topic.

Robert