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help1127

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Hello everyone,

Just a quick update. Still no diagnosis or name for what is going on with me. Does anyone know if Baclofen suppresses the reflexes. My reflexes are always changing sometimes hyperreflexive and other times normal. I'm a mystery what can I say. All I know is that the twitching has not stopped, pain in mpegs and feet are getting worse especially after walking or even standing around. Legs shake all the time. Stiffness in let's and torso are but no spasticity found on clinical exam nor clonus but sometimes it's questionable.

I just don't get how my clinical tests are always changing. I think it's because of the Baclofen.

Does anyone know if Baclofen will have this affect on the reflexes? I take 10mg 3 times a day, plus Ativan and Peroxetine
 
And you're back!

Nearly 5 years and still no ALS diagnosis, yet here you are on a forum you don't belong. Umpteen normal EMGs, numerous normal clinical exams and input from forum members and you still won't accept the fact that you don't have ALS. Why do you want ALS so badly? You want it so bad that you're back time and time again, even though your threads have been closed and you've been told to go, yet here you are. Why?

You have been told you have no ALS so, therefore, no need to be here. Lucky you.

Good luck on another forum! Take good care.
 
Your doctor would take any potential drug effects into account when they are examining you. I will tell you that my reflexes were not affected by high doses of Baclofen, Tizanindine, Dantrolene, or any of the other myriad drugs I've taken to reduce spasticity. Before my diagnosis, I was taking a whopping 80mg of Baclofen daily (am a small person) and multiple neuros were able to detect spasticity and abnormal neurological issuse with no problem. Maybe symptoms were moderately reduced (?), but drugs do not completely eliminate pathological response in clinical exam. Nor do they affect emgs.

If you are being followed by the same doctors over the years, they are better able to track changes AND advise you on what may or may not be affected by the drugs you are taking.

If you still have traveling, erratic or disappearing symptoms after more than a decade of issues, that's a pretty big signal ALS is not your problem. There are people out there who unfortunately never receive a firm diagnosis, despite being followed by specialists for decades and which defy any attempts to shoehorn symptoms into any semblance of a known disease. The human body and all its complicated wonders is likely working against you here, but again, you are not following any pattern or course of symptoms that can be attributed to ALS.
 
Thanks for your response shiftkicker. You are right about not being able to get a diagnosis. As for my clinical they have not been normal except for 2 of them and that's really weird. One of my emg's was abnormal showing Isolated Chronic Reinervation in both tibial muscles. He said it was a Hereditary motor neuropathy but then took that back on my follow up. Leaving me with nothing. I don't want ALS or any other disease for that matter. But I feel extremely short of breath so I'm have g another pulmonary function test and another EMG middle of April. What also botbersz me us that they put me on Baclofen but I don't have anything or a name for whatever I have. I don't get it and trust me if my body felt fine and all I had was the twitching I would be one happy camper.

Just sharing my story so far and if anyone here has been down this road please let me know if you ever figured out what was wrong.
 
Help1127, my response was intended to encourage you to continue seeking answers from medical practitioners and, again, reassure you ALS does not appear to be on the radar.

I do feel the need to discourage you from continuing to use this forum to create a dialogue, solicit, and/or share symptoms with others who do not have ALS. That is not the focus nor purpose of this forum. It is one thing to report findings that may lead to an actual diagnosis, but a symptom call out is not appropriate. This has been going on for 6 years now- and you still return to a forum that is really not the appropriate place for you to seek answers and where nothing definitive can really be given. I feel for you- having an undiagnosed and life limiting disease is completely frustrating- but again, encourage you to work with your doctors and not continue to try to crowd source a diagnosis from an ALS forum.
 
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I agree Thanks shiftkicker..
 
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