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shark083082

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Good afternoon -

First, I appreciate all of the time and effort and sacrifice all of you put into these forums. Thank you for all you do for those with this disease, raising awareness and supporting each other and yourself and your families.

I've been dealing with some disconcerting symptoms for 10 months now and wanted to inquire for feedback. I'll be brief.

Back in September 2013, I started with burning pain in my thighs and face, intermittent in nature. By November, I was experiencing muscle twitches in my face (cheek, jaw line and lips), as well as both calves and ankles.

Five weeks after the twitching began, I had an EMG and NCV which were clean - no fibs, sharp waves, etc.. Since the holidays, I've continued twitching into my arms, neck, shoulders as well as the hot spots on calves, ankles, feet and face, as well as chronic muscle soreness, myclonic jerks, joint pain, extremely tight muscles and joints.

It's difficult to stay on my feet for longer than an hour without experiencing extreme muscle soreness and stiffness, as well as rapid muscle twitches. I've been to the University of Pennsylvania, where the doctor went through a clinical exam and noted slightly elevated reflexes and a twitches, but did not note clinical weakness. He sent me for brain MRI, cervical MRI, lumbar MRI, all sorts of blood tests - all negative except normal wear and tear on lumbar MRI.

Only blood test issue is elevated (70) liver enzyme. He says he can't find anything wrong and said he could see me in six months if I wanted.

Questions:
1. Would muscle soreness point away from a motor neuron issue?
2. If Dr. saw the twitches, how did the EMG note no fasciculations on the exam?
3. Would a repeat EMG be necessary?

I've tested negative on the ELISA for Lyme but lit up like a Christmas tree on the IGENEX test - six positive bands, CDC positive on western blot, though I know there is a lot of controversy over the testing so I'm not sure I should proceed with heavy dose antibiotics for Lyme.

I'm not sure where to go from here. My wife and I are expecting a baby in 3 months, and the daily muscle pain, tightness, jerks and twitches are taking their toll both physically and mentally. Should I seek out a rheumotologist (even though I was tested for lupus and autoimmune markers)? Should I ask for a repeat EMG?

Any thoughts would be appreciated.
 

dalvin

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Read the stickies and pay attention to what they say.
If you call this brief, I'd hate to see long.
Trust your doctor
 

MaxEidswick

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see below ...
 

MaxEidswick

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This is an automated response:

#1 - Read the **** STICKIES **** all is revealed there. 99.9% of your questions will be answered in the stickies.


#2 if you think you have a motor neuron issue, see your PCP and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND experienced!

#3 We are not doctors or diagnosticians, but people who are dying from or caring for ALS people who often type w/ 1 finger or their eyes, etc., so replying to anxiety-ridden hypo's is a pita.

enough said?
 

shark083082

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Sorry to offend you Max - I just thought this forum was for discussing these types of issues, and I'm just uncertain of the issues above. I have read the stickies - and should probably stick to them and not the rest of the Internet. I just don't know where to turn from here ... I guess look for a second opinion and stay offline. My apologies.
 

Kosmoskatten

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Have you had correlating IgM/IgG testing through spinal tap for Lyme? This can support a hesitant Lyme positive. I am however not that familiar with the Western Blot interpretation, since it is not done regularly in swedish healthcare.
 

MaxEidswick

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>I guess look for a second opinion and stay offline.

good idea. do you have a 1st opinion from an ALS MND neuro?
 

rogeriopaguilar

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I have the same syptoms as you have. I also had an emg with showed fasciculations. The muscle that I feel more the spasms didn't show any fasciculation through the exam. I don't know why and don't have a diagnosis. I think just time will tell us what we have,
 

Atsugi

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SHARK, I'll try to answer your symptoms and questions.

The burning pain is a good sign: ALS has nothing to do with pain. If you feel pain during ALS, it's the result of being paralyzed (immobile) for weeks or months. Or bedsores.
The twitches all over your body are not the way twitches occur in ALS. In ALS, when you twitch, it's because the nerve is trying to fix itself AFTER the muscles have been paralyzed. Paralyzed means useless, won't move, limp.
The clean EMG definitely points away from ALS. That's the gold standard.
Soreness, pain, tight muscles are a wonderful sign: Not ALS. Muscles are not sore in ALS, they don't get tight. They can't.
Fatigue is also a good sign you don't have ALS. A paralyzed muscle, by definition, is not fatigued.

The first sign of ALS is a muscle failure. You fall over. You can't physically lift your foot. It doesn't hurt or feel tired or twitch--it just won't lift.

You don't need another EMG, you need to follow your doctor's advice or find another doctor you will believe.
 

MaxEidswick

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Ah, Mike I was awaiting your patient analysis :) -- You and Job.
 

shark083082

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Max-

In the Philadelphia area, I first saw a sure urban neuro, 35 years in practice, attending at UPenn, couldn't find anything.

That's when I booked an appt. with a UPenn neurologist-22 years in practice. I thought he would be my second opinion yet he hasn't offered any answers to my symptoms and I've now seen him twice. He sees no need to redo EMG-says the first wouldn't have missed muscle disorder.

So I'm left to try Lyme treatment, push for repeat EMG or search further than UPenn, which is best neuro hospital in this area.
 

shark083082

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Thanks Mike. I will pursue the lyme treatment. Thank you for taking the time to respond.
 

MaxEidswick

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>In the Philadelphia area, I first saw a sure urban neuro, 35 years in practice, attending at UPenn, couldn't find anything.

>That's when I booked an appt. with a UPenn neurologist-22 years in practice

fwiw, imho, 90+% of neuros are ALS / mnd quacks even if they have practiced 75 years. You must find one who has trained in an ALS clinic or ALS neuro. Otherwise, why bother. Taking your Ferrari to a ford dealer :-(

Although, my body isn't much like a Ferrari these days ...
 

shark083082

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Thanks for the perspective Max ... both neuros told me that major red flags would come up to any "competent" neuro if there was a suggestion of MND and the EMG was given patient choice, but perhaps I should look into a neuro with more of a specialty. Again, thank you for all for your thoughts and experiences.
 

lgelb

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Penn has an ALS clinic. Is that where you went? Make sure someone there looks at your test data. They also expedite new pt appointments. If they say no way, be happy.

As for subjecting yourself to heavy-duty abx, if you were positive on the "regular" Western blot, it may be worth doing a doxycycline course, assuming you have an infectious dz specialist who agrees (not an "LLMD" who sees Lyme in every corner for perpetuity, nor a lab that survives off the referrals of same). Lyme is a fairly common disorder where you are.
 
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