Old 08-15-2012, 01:16 PM #1 (permalink)
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Default Good days/Bad Days early on?

Hi all. Been a rough few days since the second bad EMG on Monday but my wife (even though we're separated) has been an amazing source of support and strength along with all of you here. Also, doctors are still pursuing the Lyme possibility. Got the bloodwork done today for the Western Blot test. So, my question after all that, are there good days and bad days early on or are the symptoms pretty constant? The last few days the stiffness in my legs has been pretty much gone along with any cramping. Walking nearly "normal" but balance a little off. Does this sound normal to you?

As always, thanks for all the help, advice and support.

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Old 08-15-2012, 01:37 PM #2 (permalink)
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Default Re: Good days/Bad Days early on?

Hi Kenny -
Hopefully, it is the Lyme thing - and anti-biotics will get ya back on the road to health. So happy to hear your wife is helping you through this. That is great news. I can't imagine going through this without my family and friends.

I was Dx in April. We all experience thing differently - but for me - there are good and bad days. Mostly affected on left side - hand and arm - I am therefore completely mobile (jellied legs at times). Fatigue is the main irritant and sometimes I feel downright "normal" ! Spasms come and go. Some last seconds - others times they are intense and of long duration. I suffer cramps in my calf muscles, hands and soles of my feet. The worst are the spasms in my back - thankfully I don't have them often. Everyday is different. It took a good 4 - 6 weeks before I became less frantic & emotional - a pre-planned Italian cruise did help in that regard as the trip preparations kept me focused on something other than my symptoms. Time to plan another trip! LOL

Hope this helps.
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Old 08-15-2012, 01:52 PM #3 (permalink)
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Default Re: Good days/Bad Days early on?

Thanks Elaine! Sounds like you and I are in a VERY similar boat here. Mine is manly left side too and I'm completely mobile. Still hoping for the Lyme's but not getting my hopes up too far.

A trip is a great idea and my wife and I are working on getting one planned quickly to take our daughter to the beach for the first time, think next weekend!

Kenny
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Old 08-16-2012, 08:36 PM #4 (permalink)
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Default Re: Good days/Bad Days early on?

otta: Wow that sounds like me right now. What was the main thing that made the Docs say you had ALS (if you don't mind me askin)?
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Old 08-16-2012, 08:42 PM #5 (permalink)
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Default Re: Good days/Bad Days early on?

Ken:

I am looking at Igenex to possibly get a lyme test. I have heard many of the labs do not test for it correctly? Good luck man.
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Old 08-16-2012, 08:54 PM #6 (permalink)
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Default Re: Good days/Bad Days early on?

Hey man, I can't answer your question but I do want to tell you I'm sending you positive thoughts and hoping you find strength during this rough time. Let us know how the Lyme WB test turns out. I got my results very quickly after I had that blood work done. My EMG happens just over a week from now. Equal parts nervous and hopeful. Take care.
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Old 08-16-2012, 09:14 PM #7 (permalink)
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Default Re: Good days/Bad Days early on?

Quote:
Originally Posted by Jayjmarc View Post
otta: Wow that sounds like me right now. What was the main thing that made the Docs say you had ALS (if you don't mind me askin)?
EMG test + neuro exam + my symptoms were the basis of diagnosis. In fact I went for first follow up appointment today. Of course, I asked (and wished and hoped) - but he assured us that he has not made an error.
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Old 08-16-2012, 09:17 PM #8 (permalink)
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Default Re: Good days/Bad Days early on?

Quote:
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otta: Wow that sounds like me right now. What was the main thing that made the Docs say you had ALS (if you don't mind me askin)?
I replied - but sent to moderation... should pop up soon
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Old 08-17-2012, 07:57 AM #9 (permalink)
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Default Re: Good days/Bad Days early on?

There are specific diagnostic criteria onece everything else is ruled out: thorough neurological exam, weakness, lack of nerve pain (ie pinched nerve), and an EMG that shows a pattern of de-ennervation and re-ennervation (specific to Motor neuron disorders). Mine started in my right hand , left ankle, now moving to left hand . All in 4 years so I am one of the lucky ones. Am going to and was dianosed at the ALS clinic at UVA. Each case is maddeningly unique. I started with weakness and sspasms, and no twitches until 2 years on. One day at a time!
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Old 08-19-2012, 08:30 AM #10 (permalink)
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Default Re: Good days/Bad Days early on?

Thanks everyone for the info and your thoughts! For some reason I can't get the Lymes thing out of my head. Probably just denial but until I know for sure I guess I'm going to hope. Probably done too much reading online.... LOL

Does anyone know how long the WB test takes if they've had it? I didn't go through Igenex, just local Labcorps.

Thanks again!
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Old 08-20-2012, 02:16 PM #11 (permalink)
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Default Re: Good days/Bad Days early on?

Igenex

I posted a link about this lab a while back. Should come up in a search. The FDA is investigating them because they have so many people test 'positive' with their testing.

Months of antibiotics can be dangerous--especially if they aren't needed. Some of the Lyme Literate docs are nothing but people out for money in my opinion.

There are ways to diagnose Lyme. Read what the NIH has to say.
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Old 08-21-2012, 08:47 AM #12 (permalink)
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Default Re: Good days/Bad Days early on?

Thanks notme! My WB came back negative for Lymes. Haven't seen the results myself yet though, just my GP's nurse called with the results. Thinking of trying Igenex but will talk it over with my neuro next week. NIH huh? I installed most of their videoconferencing suites at the Maryland HQ, should have made some contacts while I was there! LOL
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Old 08-28-2012, 12:42 PM #13 (permalink)
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Default Re: Good days/Bad Days early on?

Hello All!
Well, this thread has helped me at least feel that I am not crazy! I started with weakness and fatique in January. 3 months ago my legs started collapsing while standing. Now I can barely walk, but I had some good days last week and I thought maybe this was some wierd virus and I was getting better. Now it is more difficult than ever to walk and the dexterity in my left hand is getting worse. I have not been officially diagnosed yet. I am apparently unique in that I don't have atrophy and my EMG was normal. I am just at the beginning of this journey and I am very thankful for your posts and insights!

Thank you and God Bless!

Michael.
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Old 08-28-2012, 12:55 PM #14 (permalink)
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Default Re: Good days/Bad Days early on?

Michael, all my test(s) have been normal also and no official diagnosis. Not to give you false hope, I just keep telling myself that the EMG
(esp.) would tell if there was ALS. ALL the good people here say so. And my neuromuscular specialist says so. We'll keep plugging but for me, I have done all that can be done with testing it appears. Regards!

Larry
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