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Old 02-04-2015, 06:24 PM #1 (permalink)
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Default More lyme or ALS? Could I really be that unlucky?

Good afternoon. I have been reading over this forum and lurking in the background for quite some time now. I have read the stickies and I have scanned many, if not all of the forum posts in this category over the past month or so. I finally had some time and wanted to see if I could get an answer to a question or two.

First, a little background on me and my symptoms: I was but by a tick on a hunting trip over a year ago. I was diagnosed with lyme disease after several months of puzzling symptoms including, fever, malaise, body aches, night sweats, fatigue, and photophobia in my right eye. I sought out a lyme specialist in Dallas and began treatment shortly thereafter. Over the course of the past year and a half, I have taken a plethora of antibiotics of all shapes and sizes and a whole host of herbal supplements. Little by little, I have been getting better and my symptoms have all been resolving. In fact, I can say that 99.9% of all of my original lyme symptoms have disappeared. I am set to stop antibiotics in a little over two weeks. WooHoo!

All was going really well until November, when I noticed that my right leg and right arm felt really tired all of the time. I could do anything that I could before, it was just a little harder. I could climb 5 flights of stairs, but my right leg felt like I had climbed 20. I could do a pull-up, but it felt like I had done 20 with my right arm. Being concerned, I saw my pcp who ordered a brain MRI, ran some blood tests and referred me to a neurologist. All of the tests came back negative for anything.

I met with the neurologist on Dec 15th, at which time, my symptoms had intensified. While I didn't have foot drop, and could walk on my heels, it felt like I had to work extra hard at keeping my foot level when walking, and I favored my left leg when standing. Also, I had begin to have noticeable fasciculations in my calves, quads, and occasionally in my R shoulder. The neurologist re-read the brain MRI, took more labs, ordered a c-spine MRI, and a EMG, all of which again came back negative.

I know that I should be celebrating the negative EMG, but since that time, my symptoms have continued to progress. Again, there is no huge deficit in strength at this time, but I do feel as if my hands (especially my 5th digits) are slightly weak and clumsy. I have intermittent cramps in the muscles in my hands and in my calves, and the fasciculations continue on. They are particularly bad at night. I also have started noticing that my mouth and tongue get fatigued when eating a particularly chewy meal like steak or crunchy lettuce.

From everything that I have read on this site, ALS typically presents with profound muscular weakness or paralysis in one limb, or with slurred speech. My question is this: Prior to the drastic symptoms that are the hallmark of ALS, did any of you notice anything like I am mentioning? Was there mild weakness, trace hand clumsiness, or fatigue in chewing some meals, or was it abrupt paralysis.

I am a neurologic physical therapist by trade, and I have treated people with many neurologic diseases including one with very progressed ALS, but I have never had the opportunity to work with someone newly diagnosed. Because of this, I know a lot about neurology, but there is a big gap in my knowledge. I would love for this to be just another manifestation of lyme disease, but my lyme specialist doesn't think so. Any insight that you all can provide would be greatly appreciated.
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Old 02-04-2015, 06:37 PM #2 (permalink)
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Default Re: More lyme or ALS? Could I really be that unlucky?

Honey read the sticky again.

You FEEL, but are not presenting clinical weakness. EMG clean.

Go back to your doctors, the sticky answered all of your questions and people who are battling this disease went to a lot of effort to create that sticky.

You have read most of this forum and seen us say this repeatedly.

I hope your doctors can help you work out your health issues like they have helped you get over the lyme symptoms.

All the best.
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Old 02-04-2015, 06:43 PM #3 (permalink)
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Default Re: More lyme or ALS? Could I really be that unlucky?

I would suggest that you read the stickies a couple of more times over and over slowly. Several of the questions you asked are answered there. What makes you think we'd know more then a specialist? Why aren't people asking their questions directly to a professional doctor instead of trusting the opinion of someone of a computer forum.
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Old 02-04-2015, 07:04 PM #4 (permalink)
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Default Re: More lyme or ALS? Could I really be that unlucky?

I did read the stickies. I did read them slowly. I also consulted Pubmed, and many medical text books. I do not expect any of you to have more answers than the specialists or the tests that I had run. All that I am asking is this: Would any of you mind sharing some anecdotal evidence on how your symptoms initially began? I know that it commonly takes up to 15 months for a diagnosis. What symptoms led you to go get checked out? Was it something as drastic as sudden foot drop or slurred speech that started one day, or was it more subtle? I highly value all of the time that you all put into answering everyone's questions here. I am not asking for a diagnosis, and (other than the duplicate of this post that I accidentally submitted and I hope the moderators will delete before it gets posted) I will not be pestering you all with any more questions unless I get an affirmative diagnosis from a physician. Thank you for your trouble.
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Old 02-04-2015, 07:25 PM #5 (permalink)
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Default Re: More lyme or ALS? Could I really be that unlucky?

My ankle rolled outwards and I fell over. My aunt started exactly the same. My sister could not button a shirt. I felt nothing. Neither did my sister. Can not speak for my aunt she died long ago
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Old 02-04-2015, 07:26 PM #6 (permalink)
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Default Re: More lyme or ALS? Could I really be that unlucky?

Sorry honey, you are still not understanding that the PALS here who could describe their symptoms to you in detail are incredibly disabled and are battling a terminal condition.

You've read enough, both here and elsewhere. Our official stand is what is in that sticky. It is purely your choice to believe it or not. Reading other threads here will often find PALS describing their early symptoms when they first were diagnosed. Reading this section will only make you think that the people in this section were all describing ALS when in fact 99.99% of them did not have ALS at all.

Your thread title is a question.

2 members now have answered you, so I suggest you respect that you are asking a lot of our PALS (and yes I'm very defensive of our PALS). As you suggest, work with your doctors. If you want to chat about health fears please join a BFS or Health anxiety forum.

All the best.
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Old 02-04-2015, 08:12 PM #7 (permalink)
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Default Re: More lyme or ALS? Could I really be that unlucky?

Lime guy, if want to know how onset started for my husband, it was just slurred speech and profound yawning. That's it. It wasn't until he was being diagnosed that the neuro pointed out some slight fasciculations in his arms that my husband never even noticed.
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Old 02-04-2015, 09:17 PM #8 (permalink)
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Default Re: More lyme or ALS? Could I really be that unlucky?

Thank you all for your responses and for your time. This is pretty much the answer that I expected, but I thought I'd ask anyway. I hope I didn't offend anyone in the process. I am well aware that the PALS here are battling a terminal condition and many may have difficulties communicating. I can imagine that it must be infuriating to be constantly subjected to the interrogation of a myriad hypochondriacs. True to my word, I will not press any further. Hopefully, things go a different direction for me and I never have to come back. I pray that each of you find peace and comfort amid your struggles and wish you all the best.

Chris
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