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Tico1975

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Joined
Jan 12, 2012
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Learn about ALS
Country
US
State
OR
City
Portland
Hello,
Any imput will be appreciated. I'm a 37 year old male who up until a year ago was relatively healthy, other than a bout of small vessel vasculitys which appeared about 4 years ago but then slowly disapeared. Here's my story:
About one year ago I got sick, my lymph nodes got swollen and I felt unusually weak with severe back pain. The docs said probably something viral and to give it time. FYI I had already had mononucleosis a few years back. After months of feeling "not right" my anxiety started to take over and I found myself at an oncologist. He ran a bunch of tests and CT scans which found nothing but a small cyst in my liver. Sadly, by this point my anxiety was dictating every thought and action and I started to have panic attacks. My symptoms progressed to numbness on my hands and face, hot flashes, night sweats, and tremors. At this point my GP put me on Klonopin about 3mg per day and Zoloft. I also started seeing a neurologist who ran tests on what seemed like a gallon of my blood, a nerve conductivity test, and MRI of my head neck and spine. Everything was clean... In February I went on a cruise and my symptoms almost completely disappeared (all but slight numbness in my back). During the cruise I made the mistake of continuing the benzo and drinking alcohol like a fish. MISTAKE #1
Once back in the real world I thought to quit the benzos and the drinking cold turkey. MI ISTAKE #2. What followed I can only describe as my lost 3 months. Twitches, tremors, weakness, and muscle tightness ran rampant over me 24/7. My GP then put me on a low tapering dose of Valium which basically did nothing but tone my symptoms down slightly. At the end of May I stopped the benzos this was hard for 2 weeks and for a week I felt almost normal, still weak but no spasms or twitching. Then it all came back and has progressed to muscle wasting, tingly tongue with slight slurred speech that only I notice, lump in my throat and tightness in my right hand and foot as well as severe shaking. I also have night sweats feeling of bugs crawling under my skin, ringing in my ears, shallow breathing, headaches, and difficulty typing (I make more mistakes than before) I also noticed that my index finger on my right hand feels swollen and is sometimes difficult to make a fist. Now all these symptoms, while very real to me go virtually unnoticed to everyone else, except the weight loss (about 10 lbs). My neurologist still thinks I'm ok and told me to just give it time. I do not have clinical weakness even though to me the act of raising an arm feels like I need a crane. I do not have foot drop or have problems dropping things. I moved into a new house and was able to lift our heaviest furniture even though it felt incredibly heavy. I'm just scared and feel like I'm slowly wasting. My fears are augmented by the fact that I have had multiple concussions and I also use to work in a chemical plant with all kinds of nasty things (heavy metals in my blood are normal). Anyways I'm spooked and any advise would be appreciated.

Thanks
Tico1975
 
Wow Tico... what a tale.

First, this sounds NOTHING like ALS. At all.

Second, quite frankly and probably not what you want to hear, but... I think you're seeing the wrong kind of do ct or. You yourself admit to SEVERE health anxiety! A psy chi atr ist (NOT a psy cho log ist) is who you need to see. I think your neuro is being very kind to stick with you through this and to keep telling you to just give it some time. Some neuros would have just sent you on for a psy ch consult long ago. So please do him and yourself a favor and go to the psy chi atr ist! The mind can do some really nasty tricks on your body, and yes, with something like con vers ion dis ord er, it can be so severe that your body really does fall apart and you become completely disabled. It does happen. Don't let it happen to you!
 
Hello Tico,

Those are a lot of symptoms - but nothing remotely close to mine (except for the drinking on a cruise which I also did in May!). Gosh, I'd be thrilled if my neurologist said I was fine! Sounds like you had a great time on the cruise and fantastic that you got a new house. Why don't you think about taking another cruise or focus on re-decorating your new home? It would be more fun and may take your mind off things and ultimately get yourself un-spooked. If your symptoms persist another 6 months - then go back to your doctor. For myself, I had symptoms for over a year before even mentioning them to my GP. You're 37 - get out there, have some fun and relax. (I've read folks from Oregon are big on hiking - go for a walk when you feel anxious) Since you've had all the tests - trust your doctors and stay off the internet- otherwise you'll keep focusing on your symptoms and find strange diseases to fit them. (it's human nature and not a disparaging remark).

Breathe deeply and be happy that you have so much going for you!
 
Thank you both, I really appreciate the feedback. I do think going to a phychiatrist is a good idea. I often find myself obsessing about things including death. I think that I'll take you both up on your suggestions. Thanks again and God bless you both.

Grateful
Tico1975
 
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