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  • i seem to be a health wreck mystery please help me get my life back!

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    Old 01-18-2015, 11:39 AM   #1
    justin2007
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    i seem to be a health wreck mystery please help me get my life back!

    this is going to be quite a long post but theres no real short way to put it without missing vital information and im sure ima forget something and have to add to this still but am at witts end and needing answers or suggestions.
    im a 25 yr old male im currently around 195lbs, I drive semi for a living. back in 2003 I had got west nile virus which resulted in me being horribly tired. I went to school at 8am got home by 4pm went to bed and woke back up to go to school I slept so much. was falling asleep during classes. I just delt with it ever since. in 2008 I had a motorcycle wreck where I had made a dumb young kid mistake of showing off and lost it during a wheelie at over 50mph and landed on my butt and back and broke my tailbone outward. was told a fractured pelvis and had seen a good curve in my spine. added to the body pain I had since high school after that of course. I was driving truck for a "friend" back in july when the truck I was driving had problems and the a/c went out. I was trucking all week across Oklahoma and Kansas before coming back to Nebraska. shortly after that I got to feeling different physically and mentally and quit working for him. I don't usually make irrational decisions as this one I don't normally ever quit a job without already having another job lined up for me to go to. this was not the case, I up and quit and came home. was home for about 3 to 4 days when I started having these weird issues where my eyes would get acting up in a way that the only way they would feel in a relaxed position was if I were looking up and torwards the back of my head, I couldn't stop it for some reason. I was getting episode of blinking a lot. I would get tremors, and twitches bad. I went to hospital and immediately got in for an mri of neck and brain. all came back normal. they suggested I may have had a version of a seizure although an eeg 2 days after said I did not have one. after this I had horrible memory loss both long term and short term loss. I was sleeping around 20 hours a day I went from late july to mid December of 2014 without being able to work due to fatigue and overall inability to function. I had one episode of exploding head syndrome ( Wikipedia it) back in early 2014 and never again until December 2014. it then became bad where it was everynight and very painful. I seen my regular doc and he said to try nortriptyline and sure enough it fixed the problem, hasn't happened again since. back around October '14 or so my neurologist diagnosed me with multiple sclerosis off of symptoms such as loss of feeling in majority of body, and such. I started copaxone around november'14 and it significantly helped. I was able to go back to trucking mid December. recently started to go back to feeling like hell all over again, sleeping horribly and feeling awful fatigued. so I started doing even more research and was told mayo clinic in Rochester Minnesota was a great place for answers. I got a referral and just got back Friday night. I was there Monday afternoon till Friday so pretty much a week. they did all sorts of blood work tests which I can include a lot of labs after this. I seen a neuro, endocrinologist, fibro/chronic fatigue doctor, psychiatry doctor for memory and anxiety, a sleep doctor, and im thinking that's it for now that I can remember. long story short they agreed with me that my testosterone free levels may have been low for my age and said to try my leftover androgel and see if it helps. other than that they weren't too helpful which was quite the let down. they were more than happy to suggest I got cognitive behavioral therapy and counsiling for anxiety, and meditation and of the such. im not the type that can meditate. nor can I learn through therapy, im the type that must learn by research and doing things myself. the sleep doc did suggest that when I had west nile that I may have got some brain damage to where it affected my sleep, wake and internal clock, to where my body is not recognizing when to wake when to sleep and such. suggested that it sounded like my body is not going to sleep normally if at all at night since off of symptoms I told him he said my strided muscles are not going into a state of paralysis like they should during sleep where ur smooth muscles such as heart beat and breathing remain slowed but normal. all in all I was left with what I don't doubt will be a easy $10,000 bill for no answers or solutions to help me. im open for any ideas or questions as to if anyone can help me figure out what to research next or if anyone has had the same problem. thanks!
    my not normal labs were as follows
    around july I showed a high sed rate, at mayo last week showed normal level.
    testosterone free ranging 240-369 early am. have had TRT previously
    alpha-2 globulin was 1.1 with a normal range of 0.6-1.0 g/dl
    1/14/15 am cortisol 5.9 with normal of 7-25 mcg/dl
    1/15/15 cortisol stimulation test-baseline of 5.3, 30 min later 14, 60 min later was 18.
    my tsh was in the lower side of normal range
    hemoglobin was normal

    any other questions abt lab work just ask. I had so many labs drawn. also I was told I do meet criteria for fibromyalgia which would explain my pain but not the significant fatigue. im really hoping someone here sees this and can help me get closer to answers, im loosing faith in finding a solution since mayo couldn't find much certainty. I do believe however that the sleep doc could be on the right track for as far as my brain being damaged in the way I cannot regulate my sleep wake cycles as im supposed to per the bodys circadian rhythm
    thanks in advance for any help!!!!!!


    just thought of some more lol, have lost 40lbs in last 4 months unintentionally. and am thinking my body is no longer breaking down my klonopin as per by recent new job for truck driving my urine test which is very thorough for the feds my Adderall of course showed up but the benzo did not show up which I find odd especially since the half life of klonopin is as long as it is.

     
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    Old 01-20-2015, 07:13 PM   #2
    mk622
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    Re: i seem to be a health wreck mystery please help me get my life back!

    Ever read those ever helpful side effect labels and warnings? Check out the main ones for Klonopin, they include "shakiness, trembling or other problems with muscle control, body or joint pain, fatigue or sleepiness, trouble sleeping, headache" etc. some of the less common but still relevant enough to include are "memory loss, muscle aches and pains, mood or mental changes" etc.
    Quit the drug, detox your system and you'll be fine.

     
    Old 01-20-2015, 07:30 PM   #3
    justin2007
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    Uh.... would all make sense except this was all going on before the majority of meds I'm on now. Every medicine has a side effect. Suppose ur one of them 100% herbal folks..no offence just kinda came off that way

     
    Old 01-20-2015, 07:45 PM   #4
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    Re: i seem to be a health wreck mystery please help me get my life back!

    Nope, I think 100% herbal is as silly as 100% Rx. But excuse my tone, rereading my post earlier it seems a bit assumptuous. Exactly what meds were you on?

     
    Old 01-20-2015, 07:57 PM   #5
    justin2007
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    .5 mg klonopin at night for anxiety
    50mg adderall xr am for add and fatigue
    10mg nortripyline at night
    Simvastatin
    40mg viibryd for depression
    20mg copaxone daily subcutaneous injection for wat was a multiple sclerosis diagnosis which has been rather controversial lately. All I can think of at this moment

     
    Old 01-20-2015, 07:59 PM   #6
    justin2007
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    Oh yea knew I forgot 2 more. Cialis and androgel 1.62%

     
    Old 01-20-2015, 07:59 PM   #7
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    Re: i seem to be a health wreck mystery please help me get my life back!

    So you were taking Klonopin before?

     
    Old 01-20-2015, 08:01 PM   #8
    justin2007
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    Klonopin started abt 2 yrs ago. None of these were taken when everything started in 2003 and progressed ever since

     
    Old 01-20-2015, 08:09 PM   #9
    mk622
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    Re: i seem to be a health wreck mystery please help me get my life back!

    West Nile is completely irrelevant unless it did cause brain damage, which you do not seem too convinced of, nor is the crash unless it too caused neurological damage.

    Last edited by mk622; 01-20-2015 at 08:11 PM.

     
    Old 01-20-2015, 08:24 PM   #10
    justin2007
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    Lmao that last post of urs was enuf for me to realize u really do not have any background as to which would benefit this entire question. Lmfao why in the world would ya think west Nile has nothing to do with my fatigue when it all started with that... Motorcycle wreck.. Spinal cord injury that is nothing to do with it? Never had erectile dysfunction before I was an inch from loosing my sack...I guess if anyone else comes along with ideas that can logically be put together I'd b thankful for some ideas. As for the medication side effect comment I will agree with u on that one however I don't see any thought put into the rest. But thank u for the suggestion

     
    Old 01-20-2015, 08:36 PM   #11
    mk622
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    Re: i seem to be a health wreck mystery please help me get my life back!

    Quote:
    Originally Posted by justin2007 View Post
    Lmao that last post of urs was enuf for me to realize u really do not have any background as to which would benefit this entire question. Lmfao why in the world would ya think west Nile has nothing to do with my fatigue when it all started with that... Motorcycle wreck.. Spinal cord injury that is nothing to do with it? Never had erectile dysfunction before I was an inch from loosing my sack...I guess if anyone else comes along with ideas that can logically be put together I'd b thankful for some ideas. As for the medication side effect comment I will agree with u on that one however I don't see any thought put into the rest. But thank u for the suggestion
    Hey according to the CDC less than 1% of WNV victims develop a serious neurological condition from it, if you think that you're that 1% and a disease that lasts a year at most is what's making you sick now-12 years later-then carry on. But FYI, I said it's only irrelevant if it didn't cause brain damage, you said a doc who suggested it caused brain damage was 10,000 dollars wasted, implying you think he's wrong, ergo no brain damage, ergo no relevance 12 years later as WNV is an active virus, not a hidden one.

     
    Old 01-20-2015, 08:48 PM   #12
    justin2007
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    Quote:
    Originally Posted by mkavery777 View Post

    Hey according to the CDC less than 1% of WNV victims develop a serious neurological condition from it, if you think that you're that 1% and a disease that lasts a year at most is what's making you sick now-12 years later-then carry on. But FYI, I said it's only irrelevant if it didn't cause brain damage, you said a doc who suggested it caused brain damage was 10,000 dollars wasted, implying you think he's wrong, ergo no brain damage, ergo no relevance 12 years later as WNV is an active virus, not a hidden one.
    Ya ya ya everyone always thinks that 1% is such a small number huh. Eh to b honest I really have no reason to carry on with a conversation torwards u. And I didn't say I disagreed with him. The 10g I said was a loss cuz still no answer just ideas from them up in air right now. Not sure how that can imply only one thing to u? Maybe I'm just tired in general or just tired of dealing with u feeling the need to voice an opinion that I did say thanks for but in reality u have nothing backing any suggestions u made as I was never on these meds till the last 2 to 3 yrs now so hmmm wow I wander what's going on to still cause fatigue and all these other symptoms in 04 05 06 07 08 09 10 '11? Even before put on any medications. Ur kinda annoying me at this point. Don't ya got something else to do or someone else to bother? My last comment was pretty much a ( thanks for the advice but I'll keep checking around) comment. Not meaning to be a dick here but I really don't see any progress in ur comments.

     
    Old 01-20-2015, 08:53 PM   #13
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    Re: i seem to be a health wreck mystery please help me get my life back!

    I apologize, I did not mean to offend or provoke you, I am sorry that I could not help and I hope you get well soon.

     
    Old 01-20-2015, 08:55 PM   #14
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    Thanks take care

     
    Old 01-21-2015, 02:34 AM   #15
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    Re: i seem to be a health wreck mystery please help me get my life back!

    Justin,
    I have MS. How much have you learned about the disease? Unforunatly, it presents differently in every patient, but it is known that in males, the symptoms can be more significant than in women~ and males tend to have a more progressive type of MS than women do from the onset.
    There is a MS board here on healthboards which I urge you to take a look at. There are a few regular male posters. You will find that you are not alone in much of what you are describing. Having also been on Copaxone for awhile, I can tell you that loss of weight is a side effect of it, and that Copaxone is only one of ten MS drugs available (the newer ones are pills, not shots) and it may not be the right drug for you at this point. I was on it only a few months and had to switch drugs due to some pretty crazy side effects.
    Im assuming you have a neurologist who prescribes this and who dx you with Multiple Sclerosis. Is that doctor a MS specialist or a general neuro? Either way, its time to check in and report all that is going on. It may very well be time to switch drugs on you.
    You are on a host of drugs for alot of symptoms. I am not hearing that anything you are on could be causing your biggest symptom complaints, but nonetheless, you dont feel well- and your not yourself- this could truly be traced back to Multiple Sclerosis. This crazy disease tends to do all sorts of things to people and it can change on a dime with what "acts up" due to things as simple as the weather/ temperatures (MSers do much better in the cold than heat) or by what is happening in your life due to stress. Stress can trigger all sorts of crazy symptoms.
    Please check in with your neuro...
    MSNik
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