new to the forum - my story

[paul71]

This is my first post. I apologize in advance for its length. Any feedback would be appreciated...

I'm 41 and have been a runner my whole life. This summer, I noticed that I was having to stop in the middle of runs to re-stretch my calves. Other than that, I felt fine. I just chalked it up to aging.

This September, I had a UTI (suspected prostatitis) and was prescribed ciprofloxacin for 2 weeks. I had a severe reaction to the drug. I had severe achilles tendonitis, ringing in my ears, insomnia, muscle tightness, leg weakness, and pain. Approximately 1 week after stopping the cipro, I went to the ER with horrible leg pain and cramping. My CK was 328. When we got home, my girlfriend said, "What happened to your calves?" At this time, I noticed that my calves were atrophied quite a bit.

I went back to work (still feeling very weak) and in a follow up appointment, my doctor noticed that I had developed a fine hand tremor in my left hand. She referred me to an immunologist and a neurologist. The immunologist ruled out all the usual suspects - Lyme's, lupus, etc...

The first neurologist did an EMG on my legs and found peripheral neuropathy. However, he did not take any skin temps and he never provided raw numbers to me or to future neurologists.

My hand temor and other symptoms continued and I started getting obvious fasciculations in my arms. I went to a 2nd, very respected, neurologist.

He performed an EMG of my legs and found them to be normal. He found my muscle stretch reflexes to be "diffusely hyperreflexic" with my patellar reflexes 4+. Skin punch biopsy was normal. Spinal tap was normal. MRIs of my brain and spine were normal. Evoked potentials were normal.

Then he did an EMG of my arms and found "increased insertional activity, fibrillation potentials, increased recruitment pattern, with polyphasic patterns in the biceps and triceps." He also found denervation in the left abductor pollicis brevis, suggesting a chronic denervation pattern. My left thumb pad is now much thinner than my right thumb pad.

I started to develop an internal "quiver" for lack of a better word. This came on sporadically, but soon was replaced by terrible nerve pain. My neurologist put me on Lyrica, which seems to help somewhat. I am only taking 75mg, 3 times / day.

Over the next few weeks, I had my CK re-checked and it came down to between 135 and 190. He referred me to a 3rd neurologist, possibly to get a muscle biopsy done. The third neurologist performed EMGs of my arms and legs and found them both to be normal. He referred me back to the 2nd neurologist and said that I might "just" have a purely muscular disease, but he did not take a biopsy.

However, during this time, my legs have gotten incredibly tight and heavy. They feel like they don't even belong to me. I have tried yoga and constant stretching but it doesn't do any good. If anything, the stretching has made my legs more painful. Now my knees are starting to hurt. Somtimes it feels like my thighs are like boa constrictors around my bones. It is causing a LOT of pain. When I mention pain to the doctors, they always say something about pain not being a part of ALS. I know from reading this forum that's a bunch of BS.

Anyway, that's my story. My life consists of going to work and going home. My legs are getting tired and they hurt after less and less effort. I find that my thighs are "flexing" and tight even when I sit and I have to actively try to unflex them.

I don't know if I can chalk this up to a cipro reaction (which doctors know nothing about) or if I had some slowly progressing neurological disorder that is now progressing rapidly. Sorry again for the length of this post.

Paul

 

[Grateful]

Hi Paul

It's probable that it is the cipro and that things may slowly improve over time. You had the classic cipro disaster response, which is why it's black boxed, and nobody knows what the long term effects of that are because no studies have been done, for obvious reasons. It's really not a good idea to run while you are taking cipro, though of course the ripped tendons can be anywhere. Mine were in hand and my arms, and I've been warned that other tendons may go in the future even though I will never take cipro again.

Bilateral presentation in ALS is hugely rare, and clear EMG's are usually regarded as conclusive against ALS. There may be other muscle disorders which you can pursue, since there are reports of quinolone induced myopathies, see, for example,

http://eprints.jcu.edu.au/9250/1/13_clinical_udpate_Drug_induced_muscle_disorders_published.pdf

but in the short term I would urge you to consult a pain specialist; it is really hard to think when you really hurt, and your chances of making sense of it all are more or less non-existent.

There may be something relevant which you have overlooked, and even if there isn't your life would be a great deal better with the pain under control. I'm sorry I can't be more optimistic about the cipro but it's better than ALS; good luck!

 

[olly]

Paul,i would love to give you an answer but your story has left me confused.
You clearly have something going on but as to what is anyones guess........i think this is due to conflicting emg reports from the neurologists.
Sometimes its good to see another neuro for second opinion but other times like with you it can muddy the waters.
We have an emg specialist here on the forum called WRIGHT ,if he see'e this he will answer or you could send him a message and ask his opinion.
I do hope its something that can be treated and wish you all the best.

 

[vickim]

1st neuro did emg and found neuropathy in my feet and nothing else. 2nd neuro only looked at 1st neuro test results and said I did not have neuropathy and sent me to 3rd neuro and he did emg and found neuropathy and weakness. 3rd neuro did muscle biopsy and I final had a diag nosis. It took 5 years to get to this point. If you feel there is something wrong then don't give up. I wish you peace.

 

[paul71]

The neurologist who did my first emg (showing peripheral neuropathy) was, in my opinion, completely incompetent and not qualified to perform the test. He never provided raw numbers, only a 1 page conclusion sheet and a 6 page download on peripheral neuropathy off the internet. So, I am disregarding that test entirely.

The next two neurologists are probably the two most respected neurologists in my area, and they came to entirely different conclusions, within 6 weeks of each other. I don't discount the fact that some of my problems were caused by the cipro reaction, but I was having problems with muscle tightness before taking cipro. I have never read anything about cipro causing denervation, for example. But as soon as I mentioned "pain" to the third neurologist (and when he saw that I was not "clinically" weak), it was like he blew off MND completely.

I could have told him that I know I'm not clinically weak! I also wonder about the MRIs. I brought the scans to the clinic 2 weeks ahead of time but I got the distinct impression that when he opened my file in front of me, it was for the first time.

One other thing. I was in a brace for 5 years as a child for scoliosis. I have never had back pain but I wonder if there could be something spinal related. But again, the MRIs of my spine were clean. But I can't help but wonder if something was missed. I feel like nothing is going to be done until I go into an office in a wheelchair, unable to walk. I can't make up hyperreflexia, denervation, or atrophy.

I don't know if I should continue getting tested or just do the "wait and see" approach, which to me is like doing nothing.

 

[olly]

Hi paul,i am afraid that in a lot of cases its a wait and see game....a diagnosis can take years for some.
Where did you go to see these neuro's,i know alot of people tend to go to mayo or hopkins.
You need to see a als specialist or a neuro muscular specialist.
Sorry i can't be of much help.

 

[Grateful]

Paul

I sympathise with your desire to get to the bottom of this, and obviously you must do what you need to satisfy yourself. However, as Wright will tell you, there are many causes of denervation and most of them are benign; it's by no means proof that you have ALS.

I did note that you were having to stop to stretch your calf muscles before your Cipro disaster but Cipro is also known to profoundly worsen pre-existing Myasthenia Gravis in some cases, as well as initiating myopathies. I think it's important to keep an open mind and not focus solely on ALS because you may miss a treatable condition...

 

[vickim]

I think Olly is right, I would see if WRIGHT can help.

 

[wright]

Hey Paul

A few questions for you:

1) Did your girlfriend see your calves daily? Did they all of a sudden atrophy?

2) Do you have any weakness in your left hand?

3) How long in-between the first and second EMG and the second and third EMG?

Even before I get answers to those questions, your story doesn't sound a thing like ALS to me. Your signs and symptoms are too diffuse through-out your body (that is not how ALS works). Your signs and symptoms came-about too quickly to be ALS. Your latest, clean EMG points away from ALS. It sure sounds like a "bad reaction" to Cipro and there is certainly precedent for it.

To address your EMG results: it takes a little time for active denervation to show-up on an EMG (typically a few weeks). If that active denervation is remedied and reinnervation subsequently takes place, the active denervation findings on the EMG will disappear. The reinnervation will then take months to show-up on the EMG. Therefore, the reason your third EMG showed clean is because the active denervation is no longer occuring and the third EMG was done too soon to show any reinnervation.

What does that all mean: you're no longer being damaged and you are healing. Unfortunately, it typically takes much longer to feel the benefits of that healing process than it takes for the damaging process to occur. I liken it to a tornado: A tornado lasts a very short time but can do tremendous damage to a town. It then takes that town a much longer time to recover, even though the recovery process typically happens shortly after the tornado hits. You probably got hit with a "tornado" of sorts. Now you have to be patient and wait for your body to heal.

That is simply a theory but a very plausible one. Let your docs determine exactly what is happening to you. In the meantime, be cautiously optimistic that you will be just fine in time.

 

[kiara]

Wright may I ask you how do you explain hyperreflexia in Paul story? I ask you this question because I've hyper reflexes too and my neuro explained that brisk reflexes point away from something only peripheral....he said reflexes are usually decresed or absent in case of peripheral neuropathy.

 

[paul71]

Wright, thanks for taking the time to look into my situation.

To answer your questions:

1) My girlfriend saw my calves on an almost daily basis. When we got home from the ER, she was shocked to see the size of my calves. Not so much my calves, but how high up on my leg my calf muscle starts and the thin ankle region ends. Two weeks after starting the cipro, I went to urgent care with what I can only describe as an internal buzzing, and my whole body felt "pumped" like I had just lifted weights. I had tendon pain in my Achilles tendons and left wrist. Interestingly (or coincidentally?) these 3 areas were the ones that showed atrophy.
I am left handed and was playing tennis all summer. I would have thought that I would have noticed a problem with my left hand or wrist. I was actually serving and playing better than I was in high school, 20 years ago. A month before the cipro reaction, I was going for 10 mile hikes every weekend. Three weeks after starting cipro (one week after discontinuing the drug), I could not walk up and down my stairs without holding the railing.

2) I don't have "weakness" in my left hand but it fatigues quickly. I feel it cramping up after writing out checks, for example. I am now under doctor's orders not to exercise, but I can still do a pull up if I wanted to. I'd pay for it the next day with pain. Also, before my exercise restriction, I noticed that if I lifted weights, I stayed sore for a full week, much longer than normal. As I stated in my original post, there is obvious atrophy of my left thumb pad.

3) Here is the timeline of my EMGs, which will explain my confusion:

10-11-12: EMG of legs - peripheral neuropathy (but no raw numbers given)

11-1-12: EMG of arms (done by nuero #2, AANEM accredited) - abnormal. Quoting from the report: "EMG examination revealed increased insertional activity, fibrillation potentials, an increase of the motor units recruited for the degree of effort, with polyphasic patterns in the biceps and triceps musculature. There was also increased insertional activity, fibrillations, and high frequencey repetitive discharges in the abductor pollicis brevis on the left. No denervation was found in the paraspinal musculature."

11-6-12: EMG of legs (done by nuero #2) - normal

12-20-12: EMG of left leg and left arm (done by nuero #3, who works at an ALS clinic) - normal

Regarding the hyperreflexia, neuro #2 (my primary neuro) said that the hyperreflexia might be explained by my scoliosis.

I'd like to think I'm getting better (as indicated by the EMG results?) but my legs feel awful. VERY tight, heavy, and easily fatigued. I still have a slight left hand tremor. I take lyrica 75mg, 3x / day for nerve pain.

The last neurologist stated that perhaps I have a purely muscular disorder but then how to explain the recent onset tremor? I have an appointment tomorrow (1-17) with my neurologist. Hope to get some answers but I'm not expecting much at this point.

 

[kiara]

I don't think you have als but neither a purely muscolar disorder...if you find that lyrica works for you it means that there is a neurological component in your issues. Lyrica is a specific med for neuropathic pain, even when you say your legs feel tight and heavy it makes me think about neurological symptoms. Keep us updated about your appointment. Good luck

 

[wright]

Hey Paul

I will absorb what you've just shared and then wait for the results of your appointment to comment further.


Kiara

His hyperreflexes can be completely normal for him or it can have something to do with his scoliosis he had as a child (impingement of the spinal cord will mimick upper motor neuron signs). You're correct in saying that peripheral neuropathies will cause diminished or absent reflexes but if he does have some type of neuropathy, the normally seen diminished / absent reflexes with that neuropathy can be overridden by other things (again, it might just be normal for him or the scoliosis he had a child).

 

[kiara]

Wright thank you for your answer....I haven't considered the option of spinal cord impingement cause he said MRIs of brain and spine clear, maybe as you say his hyperreflexes are normal for him.

 

[paul71]

My appointment today went pretty well, I think:

Neurologist said that my knee relfex went from 4+ to 3+. However, he said that now he found slight ankle clonus. Upper body reflexes are still bascially normal. Also, I asked him to lower my Lyrica dose from 75mg to 50mg, which he did. The 75mg dose was making me too tired. I told him about my worsening tightness of my legs and pain in my joints. He prescribed me tizanadine.

I am far from a diagnosis, but he is hypothesizing that I could have a purely upper motor neuron disorder. Perhaps I have kept it at bay by working out and running my whole life? He said at this point it does not appear that I have ALS, but unlike the 3rd neurologist that I saw, he does not believe that it is a purely muscular disorder either. I have daily fasciculations in my upper and lower body. They are basically just annoying but I do notice them.

I can't help but wonder if something was missed on one of the 3 MRIs of my spine, especially given my history of scoliosis. I have a 20 degree curve in part of my spine and an 8 degree curve in another. The funny thing is, I've NEVER had any back pain, but I've always had extremely tight leg muscles.

I have another follow up appointment in 6 weeks. He said at some point in the future, we will re-do previous testing. I am learning after reading other threads on this site that I've actually had a ton of testing done in 3 1/2 months and that this process can take forever.

I did get the go-ahead to walk on my treadmill at up to 3mph for 40 minutes. I almost feel guilty saying that because of the limitations that others on this site experience on a daily basis. I have never been a patient person. My initial reaction when this started was to hit the gym even harder, but I soon learned that I just can't do it.

My neurologist acknowledged that I am presenting with a confusing case but he is confident that he will diagnose me eventually. (Of course, I think that eventually, we'll all be dead an easily diagnosed.)

In the meantime, I'm just happy whenever I have a good day. I guess we'll just treat symptoms for now.

Anybody on here have any theories or words of wisdom?