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NotALS!

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Three years ago, I was diagnosed with ALS, early onset, at Yale New Haven Hospital. I was 49. The neurologist immediately said "don't try antibiotics, they don't work and they just make you sick". He gave me a prescription for Rilutek and sent me home to die.

My husband and I immediately began to research alternate diagnosis on the internet. I had too many symptoms that didn't fit ALS, like: high fevers in the middle of the night, flushing, sweating, numbness in my face, hands and feet, painful buring sensations all over the surface of my skin, inability to sense hot or cold in my legs and many other things.

I began lyme treatments, specifically Ceftriaxone, via a picc line for 9 months. I immediately felt better, the strength returned to my legs and the atrophy that started in my shoulders halted progression. Eventually, a staff infection in the line forced its removal and I began oral antibiotics. They would work for awhile and then become less effective so I would switch to another. An EMG done at this time indicated that I did not have ALS.

Then i tried doxycycline. Within a week, I started having trouble breathing. After two weeks my breathing was so difficult that I needed a cpap machine and oxygen. I stopped the doxy and continued to decline no matter what I tried. My legs and arms got weaker. Swallowing, chewing and slurred speech became worse. Another EMG and my diagnosis was back to ALS.

I was panicking. I read that IVIG sometimes helped autoimmune conditions. I set about to find a neurologist that would prescribe it and hope my insurance would cover it. My current doctor refused but another dr in his group that reviewed my EMG believed I might have Multifocal Motor Neuropathy. With some convincing, he took over my case and prescribed IVIG.

I have had 4 infusions so far. My breathing has gotten remarkably better. Muscle is returning to my shoulders which have been atrophied for 5 years. I actually cut and painted my own toenails this week, first time in years. I have a ways to go but I am definately getting stronger.

I went for my 6th ALS opinion this week, and my 4th ALS expert. This time, the dr at MassGen said emphatically that I don't have ALS and it is probably Myathenia Gravis along with peripheral nerve disease or Grave's or MGUS complications. And so my rollercoaster ride is up again. I don't know how long it will last but I am so grateful to be feeling good and have some hope for a future.

My message is: don't ever give up. Be your own doctor because noone cares about your health as much as you do. Be willing to disagree and research information on your own. Talk to other patients so see what worked for them. Drs are human and make mistakes all the time. They are only as good as the tests that are available to them and lyme tests are woefully inadequate. Research into parasitic infections combined with genetic predisposition hold the key to all autoimmune disease.

I never tested positive for Lyme or any coinfection and yet I responded favorably to almost every antibiotic or antiparasitic drug I tried. Just stay away from doxycycline. God bless all of us struggling with this horrible disease. Stay strong.
 
I am so happy for you! Your screen name turned out to be prophetic!

Best wishes
Nikki
 
What a great and encouraging post!

I hope many read and benefit from this!
 
Good luck! So glad they have changed the DX
 
Glad to hear that your diagnosis changed though from what I know of Myathenia Gravis (sp?) is in itself a very rough disease. They originally thought that was what my dad had. But, it got ruled out after several more test. Three neurologist confirmed that he had ALS. Thanks for having a good positive attitude. We need that around here. Best of luck to you. I will keep you in my prayers. Kim
 
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