Does this sound like ALS? Is my life over?

[Onewaylife4all]

Hello,


I am a 20 year old male who has been diagnosed with Touette's syndrome, ADD, OCD, and health anxiety. I began having body wide fasciculations about 6 months ago now. At first I was worried about having MS, but after a few months and a trip to the doctor. I finally convinced myself otherwise. I have begun to worry that I could have ALS. I still get body wide fasciculations occasionally, but what's more worrysome to me is that I have developed a twitch after about 4 and a half months of body wide twitching that is more concentrated on the sole of my foot. It doesn't twitch 24/7, but it is consistant. I don't seem to have any obvious weakness that I can tell. I have done many strength tests and my ankle and foot is still very strong in all directions. I can still walk 5 miles and there doesn't seem to be any walking disturbances although my feet will hurt after.

Sometimes my left leg feels funny around the knee (strange feeling, somewhat unstable or shaky after strength tests or standing), although I have had problems with that knee over the years. Also, there does not seem to be any obvious atrophy. There are some winkles on my foot, but they seem to come and go (possibley due to my hydration level?). I can still walk on my heels and on my toes, and I can still do squats with both legs, and with one leg as well. It also seems I have gained 10-15 pounds in the last few months as well.

Does this sound like it could be a slow limb onset ALS? Am I too young for ALS??


Thank you so much

[Jamiet]

Sounds like your healthy and you have BFS.

[jimercat]

Doesn't sound like ALS. Fasciculations are constant and do not ever stop.

Go to a nero.

You say you went to the doc, what did he say about it?

CJ

[patricia1]

Doesn't sound like ALS. Fasciculations are constant and do not ever stop.

Go to a nero.

You say you went to the doc, what did he say about it?

CJ
I have ALS 8 years and dont have fasciculations contant Te first 5 years I had none.Pat

[Jamiet]

That's interesting patricia, give us a little history. How did it all start, how long to diag? Was it atrophy, weakness? Was it a biopsy that nailed it down?

rgds,

jamie

[patricia1]

I started with slurred speech Lump in back of throat choking on water nothing else for 6 years that some fascis in 6th year not alot only in arms then weakness in upper arms Quit work in2005 because it moved to lower arms now in hands no use of arms still walking but starting to get fatigued Speech is about the same for 3years still eating with little problems breathing is good. EMG are clean as of 6 months ago. Went to John Hopkins Saw Dr Rothstein in2005 and in 5mins told me I had ALS By clinical exam. Thasts my sad sorry Hope that helps you understand now different ALS persents God Bless Pat

[jimercat]

Hey Pat,

What I meant was that once you get them they don't stop until the muscle has completely deteriorated. At least this is what I've been told by the neuro. And my husband just has them in his upper body and limbs at this point.

And I agree this disease does present itself in many different ways. Each person will have a different story to tell about how it began and where they are at now. My husband didn't have twitching in what we believe was the onset of ALS. He was just getting very clumsy and first broke both his feet and 6 months later broke his leg. Then a year later had to be hospitalized for not being able to swallow. (not a pretty picture) Then about 9 months later he showed me his hand and arm twitching. I don't know how long he had the twitching because he was very afraid to show me. This has been going on for about 11 months with the twitching following a path from one side of his body to other. It has never stopped and now his arms are "sunken in" and his hands are like bones. Also, about 2 months after he was dxd, his speech started to slur like he was a bit tipsy.

Sorry, I should have been more specific.

CJ

[ltr]

And Patricia told us on the thread "eyes" that the neuro won't give her a biopsy because there's nothing else it could be!! With always having a clean EMG all these years. Isn't this completely opposite from all those scales that other pals have told us symptoms have to be consistent with???? I would just be so worried that they missed something else that could have been treated because of the clean EMG's. Either that or we have to think EMG's don't really mean all that. My EMG's have always been clean and the biopsy gave the diagnosis. I would recommend everyone insist on a biopsy for a true diagnosis. JMO. ~Leslie

[guwainengle]

cj--

can you explain what the arm twitching and hand twitching was like-- was it a complete tremor or fasciculations in the specific muscles?

G

[patricia1]

And Patricia told us on the thread "eyes" that the neuro won't give her a biopsy because there's nothing else it could be!! With always having a clean EMG all these years. Isn't this completely opposite from all those scales that other pals have told us symptoms have to be consistent with???? I would just be so worried that they missed something else that could have been treated because of the clean EMG's. Either that or we have to think EMG's don't really mean all that. My EMG's have always been clean and the biopsy gave the diagnosis. I would recommend everyone insist on a biopsy for a true diagnosis. JMO. ~Leslie
Leslie I had slurred speech and that is almost always ALS if the MRI isnt showing a stroke and there is no tumors in the tongue there is no other dx However I will insist on a muscle biopsy. Also I was told there is no true test for ALS not even a cleanEMG means its not als It is a process of elimation. Pat

[ltr]

I just can't believe all the years you have had to deal with this without getting an answer. It shouldn't happen to anyone. I hope the years have been good to you. It sounds like you have dealt with your illness rather well. I know how frustrated I have been in just one year and eight months without an answer. It's funny how the docs have learned so many different ways of diagnosing. I also wonder what makes one persons bulbar move so fast and others move slowly like yours. I'm glad you are going to get a biopsy, so that you will know if there is a chance it is something else. I'm just glad you're here, your illness has showed us there are many faces and many rules to break! Leslie

[boxer22]

I started with slurred speech Lump in back of throat choking on water nothing else for 6 years that some fascis in 6th year not alot only in arms then weakness in upper arms Quit work in2005 because it moved to lower arms now in hands no use of arms still walking but starting to get fatigued Speech is about the same for 3years still eating with little problems breathing is good. EMG are clean as of 6 months ago. Went to John Hopkins Saw Dr Rothstein in2005 and in 5mins told me I had ALS By clinical exam. Thasts my sad sorry Hope that helps you understand now different ALS persents God Bless Pat


What do you mean when you say lump in your throat?

[patricia1]

It felt like a post nasal drip I really couldnt get up or down I spent the first year sucking on cough drops,but nothing helped That was my first sympton Now that is gone. Pat

[Jamiet]

Pat, i have had that for about 6 years, on and off.

[patricia1]

It drove me crazy Isnt that that annoying Pat

[vmd]

I read about a woman here in my town who was also diagnosed with bulbar als. Her story is very similar to Pat's story. She started with bulbar symptoms about 7 years before her diagnosis (slurred speech, I believe). Initially, she did not know what it was, so she went to various doctors. When she saw the ENT, he instantly said it was ALS. Perhaps, those of us who have bulbar symptoms should just go the ENT doctor and they can diagnose. In my case, I am fairly certain that if I went to an ENT specialist, the doctor would see the atrophy, and along with the slurred speech I am having and excess salivation, what else could it be?


Since EMGs are not definitive, is any clinical test definitve?? if not, it seems as though we waste much money trying to seek a diagnosis. After all, there is no cure, so we seek a diagnosis only to relieve our anxiety. Why not wait until it's obvious, if we can live with the anxiety? I have more than the requisite upper and lower motor symptoms which would qualify me for the diagnosis, in addition I have bulbar symptoms.

With respect to fasciculations, my situation is also different from what some of you describe above. I don't recall any constant fasciculations on my right arm, and that is the arm that is weak! How does one explain that? Now, I have fasciculations bodywise, but also some that are localized and constant (calf muscles, mostly my right, but also my left). It is all so disconcerting because of the variation in presenting sympotms and progression.

[patricia1]

If you look up slurred speech ALS does pop up.I lived with the anxiety for 6 yesrs before a dx and I am glad I didnt have a dx I went on with my life and tried to ignore the speech It wasnt easy but I proably would have given up working dancing babysitting for my grandchildren The gym,but I didnt. So in a way I am glad they didnt know what I had Knowing is very upsetting. Pat

[vmd]

Your progression has been so slow, I'm assuming and I pray that it will continue. In my case, I can't claim this is the case. I started experiencing weakness in my right arm only four months ago, and now I am developing bulbar symptoms rather quickly.

Also, I believe people with Parkinson's disease can also have slurred speech.

[ltr]

That's very true about the knowing. I think we start the journey to a diagnosis hoping that it is something curable and then when we get close to a diagnosis we think maybe it's better not to know. It's a lose lose situation. And as far as testing goes, when doing research many of the illnesses will say that the tests can still be negative, so I guess we are just hoping for an answer when we have the tests done. The problem with not doing the testing is that many illnesses mimic als and many of them are treatable, but the damage is left behind as permanent. So, the quicker a diagnosis for those, the better.

I have also had a post nasal drip/lump in my throat for a couple of months now, hoarse voice.....the whole works. So, other neuromuscular illnesses can cause this too.

[patricia1]

I was tested the the first onset of slurred speech and all was neg I has mri emg blood test ct and spinal taps alllllllllllllll neg so they were all baffled so they waited. Now what would I have been able to do. If there wasnt a test out there for ALS only clinical If you think emg is a test for als you are all mistaken a neg eng does not mean you do not have als Yes slurred speech can be parkinsons but there is a test for that or a stroke there is a test for that or it could be MG there is a test for that MS even a test for that all were Neg So what can I have other than ALS any Ideas Pat

[jimercat]

G,

To answer your question: No they were not tremors. The twitching or fasciculations started in his left hand and left forearm, then progressed to each muscle group up to the left pec. This then progressed across back and front to right arm and hand, going from each muscle group in a somewhat "organized" manner, like a platoon marching to war, by God! Each time hunkering down to demolish the muscle it was fighting. :( Now, however, he does have uncontrollable tremor in his left hand and can no longer really hold on to anything small or manipulate buttons, use a knife, etc... No strength or fine motor skills left in that hand. (left handed)

cj

[patricia1]

Your progression has been so slow, I'm assuming and I pray that it will continue. In my case, I can't claim this is the case. I started experiencing weakness in my right arm only four months ago, and now I am developing bulbar symptoms rather quickly.

Also, I believe people with Parkinson's disease can also have slurred speech.
Not so lucky I am speeding up now. Its in my arms going to may legs and the fatigue is overwelming pat:(

[vmd]

I'm sorry to hear you are progressing quickly of late. Your situation is very mysterious, to say the least, especially given the clean emgs and the slow progression of the bulbar-type, which as we all know, it's supposed to be rapid in progression. Perhaps, you are unique and have a condition that is unique to you?

[jimercat]

Hi all,

It may well turn out that researchers will eventually find that there are varying forms of ALS and will have to define them as such. Perhaps if my husband had gone to the doctor earlier, he would have been in the same boat. I do remember him complaining about fatigue around 3 months or so before he showed me the fasciculations. He has always had a hi energy level and we were mystified and chalked it up to long hours on the job.

I suppose this is why the national ALS registry might help. I don't know what info they will collect, but it may be a start to help define more specifically the different symptoms PALS experience and offer doctors more data to diagnose.

Pat-Sorry to hear that you are getting worse. My husband also is experiencing the extreme fatigue now.

[monkey]

"I am a 20 year old male who has been diagnosed with Touette's syndrome, ADD, OCD, and health anxiety."

Sometimes your answer is in your question..

What meds are you currently on?.. if you suffer from tourette's.. add and ocd i know they have you on medication. Gather that info and then do some research or consult you doctor on how they may affect your neurological system. Also you noted you have health anxiety.. have you recently stopped taking meds for this?

[ltr]

Monkey - didn't you also say that you suffer from hypochondria when you were leaving the forum a while back? I didn't know there was a med for this other than anxiety meds. But, I think we should be careful in this area because even people who suffer illnesses such as ocd, add can have real medical illnesses too. I'm sure meds for these can cause some of the neuro symptoms, but the docs usually switch them around if that's the case. I know anxiety can exacerbate neuro symptoms, but I don't think it's good to blame devastating symptoms on an emotional state completely. We need to be careful here.

[monkey]

I know anxiety can exacerbate neuro symptoms, but I don't think it's good to blame devastating symptoms on an emotional state completely. We need to be careful here.

Nowhere in my most post did i mention it was a emotional problem, also please stop harassing me about a post i made.. i was only trying to help myself and others. If you disagree then ignore my post, thank you.