Newbie - My Stressful Story

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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Newbie - My Stressful Story

Postby Adam C on November 18th, 2004, 1:45 pm

Hi everyone,

First of all, I'd like to say that this board is such a comfort and I am so thankful to have come across it. While I'm fighting with my symptoms, it's good to know that there are other possiblities out there outside of the worst-case scenario. I hope you don't mind if I tell my story...

FYI - I'm a 31 year old male.

JUNE 2004 - I was an avid runner and participated in a half-marathon in late June, although I had been running consistently during the 1st half of the year, I was very disappointed with my time. I really struggled throughout the race with 'dead legs'. I had experienced that same feeling in some of last training runs before the race.

JULY 2004 - I attempted to run 2.5 miles mid-month and again suffered from dead legs. It felt like I had been running for days after I was done. This was very unusual for me as I have always been able to run 6 miles with no problems at all. I thought that my body might be tired from all the running that I had been doing so I decided to rest my body for a while.

AUG 2004 - SEP 2004 - I notice some symmetrical atrophy in my body but I had always weight-lifted and had stopped after the marathon to give my body a break so I chalked it up to that. At that time, I did experience some infrequent, sporadic twitching but thought nothing of it.

OCT 2004 - In the middle of the month, I try running again and I am worse than before. That night I my legs started twitching uncontrollably. From this point forward, I have experienced almost constant widespread fasciculations. Having experienced this exercise intolerance coupled with the twitching I became concerned. After doing a search on the Internet, I became REALLY concerned.

I visited my PCP and after running test I had a mildly elevated CK level but no signs of Diabetes, Auto-Immune problems or Arthritic problems. Because of the twitching, he recommended I see a Neurologist.

NOV 2004 -

The Neuro said he did perceive weakness doing his routine exam but also said that my muscles looked okay. He tested for Lyme, B12, Sjorgen and Diabetes again. All negative. Therefore, he decided to perform a brain MRI and EMG.

He did an NCV test and the EMG on Nov 3rd. The whole affair took 20 minutes (which seemed extremely short to me) and he used this very 50's looking machine to test me. He tested down my right side (arm and leg) but never asked about where I was twitching the most or experiencing the most weakness. In any case, he stated that the EMG was normal.

Brain MRI was conducted on Nov 4th and he said that was normal.

At this point, he has taken a wait-and-see attitude about things to see if my symptoms progress. In the meantime, I'm twitching like a mad-man all over my body, have weakness throughout my body and most recently feel like I have some weakness in my right foot.

I've been a basketcase throughout this whole process and have taken Xanax at various points and also had to go to the ER when I had a panic attack thinking that I surely had something awful.

I have scheduled a 2nd opinion for Nov 30th.

Thanks all for listening (I know it's long-winded) and feel free to comment on my symptoms/experience. I'd particularly like to know how people feel about EMGs. It seems to me that it is important how the test is administered. I'm glad mine came back normal but can't shake the idea that my Neuro didn't administer the test properly or it was too soon.

Adam
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Postby Stephanie on November 18th, 2004, 2:04 pm

If you had als you would not have a normal emg. The machine does look a little archaic but that does not matter. If the neuro himself did the emg then I'm sure he did it right. If you won't feel better then I suggest a second emg w/a different experienced neuro to completely give you peace of mind. BTW, if you are twitching then it is not "too early" because twitching is one of the last symptoms of als and even then most patients don't even know they are twitching because it is so fine. Twitching in als is caused by the working nerves trying to get the dead nerves/muscles working again which is futile because these working nerves are themselves dying (complete laymans terms--read bfs in a nutshell to get a more scientific description) therefore an emg would pick it up without question even if he tested non-twitching muscles. Keep reading our posts and you will feel better.
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Postby jcavan4125 on November 18th, 2004, 6:58 pm

Hi Adam,
Welcome to the board. I agree with Stephanie that you would not have a normal EMG if you were exhibiting symptoms from ALS. That being said, the idea of a second EMG from a different neurologist should give you confidence that this is not anything worrisome. Good Luck!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby eric on November 18th, 2004, 7:44 pm

what kind of lyme test did you get? and what were the results? please post results of western blot, also you have to send your western blot to a reliable source.like igenix in ca.
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Postby Johnny on November 19th, 2004, 12:02 am

Adam,

Welcome to the board. I'm sorry to hear about your ALS worries - I know how you feel. In fact, we all do here in some way or another.

You seem concerned about the accuracy of your EMG results. You mentioned technique in your post - do you think the neuro was incompetant or that he somehow missed seeing the signs of ALS that would be evident on EMG? Or were you not satisfied with the number of muscles tested or where they were tested? Not trying to ask you 20 questions - but I'm wondering where all your doubt is coming from.

I too questioned the accuracy of my EMG after it came back clean. It helped when I asked for and received a copy of the EMG report. Seeing "none" or "norm" in every column still helps to this day and my EMG was administered in March. It might help you to obtain a copy.

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Postby amy_twitch on November 19th, 2004, 12:13 pm

Welcome Adam,

Your story will have a good ending--I'm positive! Like you, my experience with BFS started right at 30 (I'm almost 31). Oddly enough, if you read up on anxiety--this is also prime time for anxiety to strike. Anxiety is a really strange beast. You will swear something is medically wrong with you--when in fact it is simply your body going haywire from anxiety. I don't know the 'true' cause of BFS--no one does. However, anxiety certainly plays its part.

Basically, I went through hell and back last year. I never thought I had anxiety--and then it hit me like a ton of bricks in the form of panic attacks (I've had three that landed me in the ER) and strange physical symptoms, including jelly legs.

Thankfully (with the help of a short-term regimen of xanax along with the passage of time), I'm now just fine. I had all the tests though...three different neuro visits, blood tests, lyme test, MRI and EMG--ALL fine (with the exception of some auto-immune stuff in my blood work that my doctors think is 'normal' for me).

I did not have a trigger for my anxiety--rather it was very generalized. I did go through a couple months where I was scared to be alone with my kids for fear of having another panic attack (typical of anxiety). It could be that you are having odd triggers when you try to run--your body is giving you the 'jelly legs' symptom of anxiety....and it all feeds on itself and gets worse and worse. It could also be a wicked combination of physical and mental fatigue (especially if you're suffering from anxiety).

There is NO such thing as having a test too soon when it comes to neuro stuff. Abnormalities would show---read through this board...we've had many many good discussions about neuro tests. Your results are awesome news, and you have to accept it. Again, anxiety is keeping your from believing good news (we've all been there--which is why many of us have had multiple opinions). Still go for your second opinion--it will help drive it into your head.

I hope you can overcome your anxiety asap. It's not easy--and it took me many months. If you feel like a basket case, talk to your doc about staying on a short-term regimen of xanax, using it regularly instead of sporadically. Once you've felt a period of calm and confidence, then wean off the xanax. I haven't used it in many months, but I still have it on hand--just in case a panic attack comes from out of the blue.

My best advice--BELIEVE your doctors if they give you positive test results--even if your body doesn't feel normal, you mentally have to start believing it. Also, read up on anxiety if you haven't already. There's an awesome book (it's from the 1970s) called "The Anxiety Disease"....it's a quick read, and it will help you understand anxiety tremendously. It was the clincher that finally made me accept anxiety in my life (I had been in denial about anxiety and only believed something organic must be wrong with me. To this day, I'm physically as healthy as can be--and I'm beating the anxiety big-time).

Time will be your best friend. Do everything you can NOT to obsess on your symptoms--it will only make everything worse. Get out and stay busy---and mark a date on your calendar six months from now. When that time comes around, I bet you'll be out of this current slump!

Give your body and your mind some rest--everything will get better in time. The mental battle is the most important part. Trust me. Your physcial self will feel better once the mental part is more under control.

Keep us posted about your second opinion...and happy reading!

Amy
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Postby amy_twitch on November 19th, 2004, 12:14 pm

PS...I forgot to mention: I twitched for one year straight--and now it's all gone. It took a long time though....but it did subside :)
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Postby Adam C on November 22nd, 2004, 4:19 pm

Thanks everyone for responding to my post. I can't believe how supportive everyone here is...it's really amazing.

I actually got in to see a 2nd Neuro today and he was much better at listening to me. While he did express some concern about the quick administration of the EMG from my other Neuro and wouldn't rule out ALS completely, he did say that my neuro exam was normal. He also said that ALS usually presents focally instead of widespread weakness which I've been experiencing. He is asking me to wait 6 weeks to see if my symptoms change and will conduct a 2nd EMG at that time if necessary. That's seems like forever to wait though because I definitely need that for peace of min.

Amy_twitch -

Thanks for sharing your story and book recommendation. I am definitely going to check that out.


Johnny -

I am concerned about the competence of my Neuro and the admistration of the test. The NCS/EMG only took only 20 minutes to conduct. It seems that other poster's on this board had tests that lasted an hour. On the EMG, he didn't seem to allow the needle to remain in a rested position very long before he asked me to contract the muscle. In addition, he tested areas that weren't primary areas of twitching. Finally, when I asked for the results of my study all I received was the following write-up:

With the muscles at rest, this patient displays normal insertional irritablity, and all muscles are electrically silent at rest. On voluntary muscle contraction, the patient does display normal recruitment. There are full interference patterns achieved, and motor unit action potentials in general are normal to form, duration and amplitude.

That's all they gave me.

Eric -

Here are the results of the Lyme test:

18 KD (IGG) BAND - nonreactive
23 KD (IGG) BAND - nonreactive
28 KD (IGG) BAND - nonreactive
30 KD (IGG) BAND - nonreactive
39 KD (IGG) BAND - nonreactive
41 KD (IGG) BAND - reactive
45 KD (IGG) BAND - nonreactive
58 KD (IGG) BAND - nonreactive
66 KD (IGG) BAND - reactive
93 KD (IGG) BAND - nonreactive

23 KD (IGM) BAND - nonreactive
39 KD (IGM) BAND - nonreactive
41 KD (IGM) BAND - nonreactive

Not sure what that means.

Thanks again everyone.
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lyme disease bands

Postby eric on November 22nd, 2004, 10:14 pm

you have two bands that point to lyme disease. these are the bands that i had with profuse lyme disease. you need to go back to your doctor and get antibiotics for a week or two to chase the bacteria out of the nerves into the blood. then retest. by the way lyme is a clinical diagnoses and not tests.
eric
you better find a lyme doctor and pronto... were do you live?
try the chat room on lyme aid...it is more up your ally right now
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Postby LadyChester on November 22nd, 2004, 10:47 pm

Adam - depending where you live, Dr. Louis Reik is one of the leading experts on Lyme disease. He is a wonderful man, and a fantastic neurologist. He is at the UConn Health Center, right here in CT where Lyme was first diagnosed. If you want more info, please pm me.
~Kim
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