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Jakala your story is so much like mine, and I'm just up the rd from you in Northville. I'm two years into my nightmare. I don't have ALS (three different neuros have assured me of this) but I have very similar symptoms that won't relent. I gave up a career I loved, and my young family has suffered both emotionally and financially (over 20k in medical bills and that is with good insurance). I too tested positive for Lyme via Igenex and of course negative by CDC standards. I don't have the energy to get into the Lyme debate....I have no idea what to think about anymore. I have been getting treatment since Dec and I was feeling better, but I've recently suffered a setback and I'm questioning the whole thing. The point I'm at though is to try the lyme protocol and maybe get better, as opposed to doing nothing and killing myself with stress, anxiety, helplessness, etc.
 
As the days go on my left hand appears weaker each morning. And, when I am holding a an object such as a book, my left hand begins to shake after about 15 seconds. I also continue to notice the muscles above my left knee to atrophy.

I spent the weekend with my family on the beach shores of Lake Michigan. It was a great escape from all of this. My son is a great joy for me. I keep things together for his sake and do not drink or do anything self destructive. In nine days I have a new neuro appointment and then shortly after I will have an appointment with an ALS specialist. As I take antibiotics, we are hoping my symptoms are Lyme related and cease to progress. However, they are very asymmetrical and left sided. I am on day twelve of a ninety day course of antibiotics. The doctors that prescribed them is a bit unconventional and we are not sure if I really even have a positive diagnosis for Lyme. The lab Igenex was criticized for giving false positives in the past. Since they have claimed to have met all certifications and criteria to give accurate results. My results returned as positive according to the lab, but they add the disclaimer that clinical is also part of the diagnosis.
 
Hey great to hear you spent time with family. You are just starting the antibiotic it may take time to see results. How is the book coming along? I just got back from a camping trip. I am tired but rejuvenated. Now I am getting ready for a visit from my oldest son and grandchildren. WooHoo!

Just take one day at a time. Relax and be patient. Enjoy what you can and work around the rest. Everything will be ok not matter the outcome of all the tests. It is not going to change who you are, it may change what you do and I pray that no matter the results you accept it and go forward.
 
Vickim,

Thanks again for the words of encouragement. One of my children's books is being illustrated. I was a CG artist for films like the Hobbit, so I have art talent, but my current symptoms make doing artwork very difficult. Creative control has been handed over to a talented artist, my Wife.

In addition to trileptal I have started taking small amounts of Seroquel. Immediately I noticed that it relaxed my muscle pain even more. I believe it is also a central nervous system depressant. I initially thought my pain relief was from antibiotics which would have been good news, as it would point more toward the Lyme theory. To test this I skipped Seroquel for one day. The results were very bad. Immediately all of my neropathy pain returned. It is likely that the gains I thought I was making with the "possible Lyme" were really just from Seroquel masking my symptoms.

Regardless, I have to get back to my life here and keep moving on. There is still hope that it is curable Lyme until I see the ALS neuro soon.
 
I only read the initial post here but wanted to say, I went to Youtube and watched videos of BFS and ALS twitches. They look exactly the same.....difference being the benign fasciculations are MUCH more common. Not sure why that would baffle your neuoroligust when there are so many documented cases of BFS now.

It can be caused by anything from anxiety, caffeine, nicotine and sometimes is just idiopathic. It's a common occurrence in perfectly healthy people and the body-wide twitches actually point away from ALS.
I think this is kind of a scare tactic and maybe that's why it takes FOREVER to get a neuro appointment, an EMG, MRI and all those things which are making so much money for the doctors and hospitals.

BFS is actually very common! People have actually video-taped their twitches!
 
Thanks to everyone for the support. Tomorrow is a big day as it is finally my neurology appointment. I have been noticing significant weakness on my left side, particularly in the morning now. My left hand is shakey holding objects in the morning. The fasiculations have calmed down with Trileptal, but are still something I experience. I am often in neuropathy pain after using the muscles.

Well, I will do my best to pray tonight and prepare myself mentally for anything the neurologist might say tomorrow. I think I am far enough along now on the timeline that a diagnosis should be easier to make. Hopefully it is something benign. I hope for the best and try to prepare for anything.
 
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