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Author Topic: Fear of ALS  (Read 224 times)

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Offline kellermanbuckley

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Fear of ALS
« on: July 06, 2014, 04:13:07 PM »
Hello everyone,

For the past 8 weeks I have been experiencing what I fear are symptoms of ALS. The symptoms started with strange sensations in the muscles of my left forearm, almost akin to tightness but a very different feeling than what I am accustomed to when I think of tight muscles after a workout. It felt more like there was something wrapped around my forearm. That was the first symptom which started in the first week of May. Since then the feeling has spread to the backs of my left and right forearm. More and more now it feels like fatigue and weakness than anything else. However I am a thirty year old male who has always been in good shape his whole life so I still have strength and I have had a GP visit and a neurologist visit and I have been able to pass all of their strength tests. I also currently am having muscle twitches all over my body. They have been become more constant as the weeks have gone by. I had a full work-up with a head MRI, cervical spine MRI and an EMG of my left arm. The EMG was conducted exactly 7 weeks after I first started noticing symptoms in my left arm. The EMG was completed by a Physical Medicine and Rehabilitation doctor, not by a neurologist. Everything came back normal and after reading the results of the EMG and conducting his clinical exam the neurologist told me that I do not have any signs of ALS. That was two weeks ago and my symptoms have persisted.

I know that I am only thirty years old and that I am not statistically at risk for this disease. However, for the past 8 years I have taken Propecia (Finasteride) for hair loss and I found three other young men on an ALS forum (ALSTDI) who reported taking this medication for several years prior to presenting with symptoms and eventually being diagnosed with ALS in their late twenties. I have looked but I am unable to find any scientific connection between Propecia and ALS. So although there has been no connection made between this medication and the development of ALS, I am afraid that taking this medication put me at risk for developing the disease and as my symptoms progress I fear more and more that I have it. While taking the medication for the years that I did, I never had any side effects or negative reactions and the day that I started to feel the strange feeling in my left forearm, I stopped taking the medication.

So ultimately, despite the fact that I was given a clean bill of health from my neurologist, I am still worried because I am still symptomatic. Furthermore I have found many stories - especially of younger, fit men - who were initially able to pass clinical neurology exams and EMGs before later being diagnosed with ALS. On top of that having found the three anecdotes of young men diagnosed with this disease after taking the same medication that I did, now I have a perfect storm of fear and anxiety. This has brought me to this forum looking for some support and hoping with all my heart that I do not have this disease.
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Offline Ineedtosmile

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Re: Fear of ALS
« Reply #1 on: July 06, 2014, 05:57:51 PM »
If you want to get it checked, do so, but I think it is fine :)
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Offline ShawnW

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Re: Fear of ALS
« Reply #2 on: July 06, 2014, 06:37:06 PM »
I would imagine you and those gentlemen also took ibuprofen, vitamins, drank water, ate food and so on.  That doesn't mean any of those things cause ***.  Second, nothing you said...absolutely nothing sounds like a neuro nasty.  That isn't how *** presents.  It does sound much like anxiety and a hyperexciteable nervous system.  Now, I assure you that you won't believe will go to your neurologist and he will confirm what the other doc said.  It will give you relief for about 4 hours, then the doubt will creep in...then you will want to see a subspecialist because "the symptoms persist".  Finally you will believe and you will start to heal and realize all those people saying it's anxiety are right.

I say these things not to be smug, but to map out the journey most of us take with this monster of a fear.

PS- stay off the *** forums.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?,93402.msg521266.html#msg521266

Offline SkittishSari

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Re: Fear of ALS
« Reply #3 on: July 06, 2014, 10:40:02 PM »
First off, I am right there with you with this fear. It started about a month ago for me with some leg stuff. I was sure my leg was weak and it was twitching like crazy, plus it was crampy and felt tight and just weird. In the process of googling about that, I reaquainted myself with Bulbar ALS, and actually thought at the time that it was good I didn't have those symptoms! Fast forward a week, and I've got all those symptoms (although my leg is more or less fine now). So now I am worried I have Bulbar ALS, which is even less likely than the other kind of ALS! I cannot go back to my doctor claiming that I now believe I have Bulbar ALS when he checked my leg out for ALS a month ago, so I am just suffering through, hoping it is not really the case.

With regards to your medication for hair loss, seriously, if you google anything + ALS, you will get a hit about how they are somehow linked (especially on the ALS forums). Seriously. I would encourage you to try it but that is googling and it will ultimately make you feel worse. Like Shawn says, do not, under any circumstances, go on the ALS forum! The people on there are not doctors, and it is impossible to interpret, from a medical stance, what they write. Not only that, but there are hypochondriacs trolling that site daily, and if I were someone who was genuinely ill, dealing with that, I might be tempted to troll back once in a while on there. Seriously. So stay away from there. It is the absolute best thing you can do for yourself.

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Tags: ALS Health Anxiety 

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