Old 07-16-2007, 11:48 AM #16 (permalink)
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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.
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Old 07-16-2007, 12:00 PM #17 (permalink)
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If you look up slurred speech ALS does pop up.I lived with the anxiety for 6 yesrs before a diagnosed and I am glad I didnt have a diagnosed 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
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Old 07-16-2007, 12:06 PM #18 (permalink)
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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.
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Old 07-16-2007, 12:18 PM #19 (permalink)
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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.
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Old 07-16-2007, 12:25 PM #20 (permalink)
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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
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Old 07-16-2007, 12:25 PM #21 (permalink)
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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
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Old 07-16-2007, 12:27 PM #22 (permalink)
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Quote:
Originally Posted by 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.
Not so lucky I am speeding up now. Its in my arms going to may legs and the fatigue is overwelming pat
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Old 07-16-2007, 12:57 PM #23 (permalink)
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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?
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Old 07-16-2007, 01:26 PM #24 (permalink)
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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.
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Old 08-29-2007, 08:15 PM #25 (permalink)
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"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?
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Old 08-30-2007, 12:47 PM #26 (permalink)
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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.
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Old 08-31-2007, 01:20 AM #27 (permalink)
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Quote:
Originally Posted by ltr
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.
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