Update. going on 20 months ... just venting really

[Teacherman]

Hi again everybody,
I posted here back in Jan 2009. Quick recap: About a week after getting a swine flu shot, I started having twitches and cramping in my arms and legs-this was more than a year ago, and my dr ran my labs and found I had elevated ck levels but that quickly settled. In the beginning I had a lot of intense symptoms--painul cramping, weight loss and "heavy" limbs. For about 3-4 months I had a lot of cramping, twiching, abnormal sensations (vibrating, electric shocks), night sweats and percieved weakness. Also around this time I noticed I was losing mass in my right calf and just above my right knee. The docs didn't seem impressed with my shrinking muscles which was good, but I got shuffled off to a neuro and I recieved an emg at Northwestern in Chicago at the ALS clinic and a second opinion from a team at UIC, 4 months later I had a follow up Northwestern again. All three were clean. The docs told me it was either anxiety or the effects of a previously herniateddiscs. I took the good news and got on with my life.
I did my best to put it out of my mind.
Last summer I started having trouble swallowing mucus in the back of my throat and went to an ent who said I had LPR (which is like gerds but higher up) and I didnt think much of it. Throughout this time most of my really weird symptoms abated, but I kept twitching and my right leg kept feeling weaker and the atrophy by my knee seemed to progress.
Two weeks ago I was in for some unrelated PT and my therapist looked at my knee and said that I had obvious atrophy. I asked if it might be because of my back and her opinion was "Not a chance. That's medical." My back specialist also thought the disc issues were very minor.
Now it's back to square one with testing and I'm freaking out. I'm going to meet with my GP again Wednesday. I just wanted to vent. I feel like my lifes been "stop and go" for almost two years because of this. Did any of you folks have a similar experience?
Thanks
TM

 

[Teacherman]

Sorry, that should have said January 2010.

 

[trfogey]

Congratulations for living the past 20 months with essentially no changes in functionality. Had your symptoms been caused by ALS, you would have been substantially crippled or even dead by now.

The fact that you aren't crippled is the best indicator that your symptoms weren't caused by ALS. Put ALS out of your mind and work with your doctor to find out what's bothering you. Tell your physical therapist that a herniated disc is one of those medical conditions that can eventually lead to atrophy. Of course, if she had gone to medical school and done the training to become a neurologist, she would have known that and wouldn't be frightening her patients with her ignorant remarks.

Good luck.

 

[notme]

With your back doc also saying the problem isn't your back, you will just have to let them continue the search

Back issues can change rapidly, though. How old is your spinal MRI things can change. Is your back doctor a neurosurgeon or a pain doc?

You will find that they often disagree. I went to a neurosurgeon with my MRI results to have my spine ruled in or out as the cause of my problems. The neurosurgeon ruled my spine out. The ALS neuro unfortunately agrees. The pain doc is still convinced my problems are all related to my spine and that the two neuros are wrong.

Just remember that nearly 2 years of no progression is a good sign that something other than MND is the cause of your problems.

 

[awieleba]

teacherman,

I know how you feel.
I know it is confusing and concerning when you have atrophy (muscle shrinking) and no answer. I have the same issue. My PT said I was clinically weak in lots of area's to her, although my ALS neuros said not the kind of clinical weakness for MND. And that is true as I feel weak but can do things, just not repetious things. I have the muscle shrinking in my shin and above my knee's as well and my forearm with hands. ALL my emgs in those area's to date have been clean. SO, try to relax. I only post this because so many come on her thinking that in a year or two they will get told they have als or a dirty emg. that doesnt always happen and not so far for me. And remember that you have to have other upper motor issues fond on clinical exam. I am concernced at why my muscles are shrinking and getting fatigued but it is not appear to be due to ALS. My MDA doc is looking into MITO and I just did some genetic lab test. There are many other muscle disorders other than als. I understand how you feel, I am 3+ years into this and kept thinking that I would get better. You just take it day by day and keep busy.

 

[Lobster]

Back/spine problems can sometimes be very difficult to identify. I know a man was walking around in excruciating pain for almost a year before one of his doctors figured out he had a fractured disk! Sometimes multiple CAT scans and MRIs are necessary. I would pursue this angle instead of ALS since you have a clean emg.

 

[HelenL]

Teacherman, from what I've learned, clean EMGs, no ALS. They don't lie, and they'll be "dirty" long before you notice symptoms.

On the other hand, have you ever been tested for LYME disease? If not, insist on getting test with the Western Blot test, not the ELISA test, which is highly unreliable. If you may have been exposed, try going on an antibiotic for 30 days BEFORE getting tested, as it boosts your chances of the test picking up the Lyme. The bacteria is notorious for being able to "hide" in long-term cases, and not getting picked up. Go to the Lyme forums for more info.

Good luck!

 

[Teacherman]

Thank you for the thoughtful responses everbody.
I've been tested for lyme once back when this started, and I was negative, but I doubt I had the test you mentioned, HelenL. The atrophy is frightening. It starts as a big gross dent (about an inch of muscle loss) just above the outside knee at the distal end of the vastus lateralis and it extends as a deep diagonal ditch running across my knee. On my good leg, when I tense my quad, I can make my knee "bounce" up and down. On the atrophied one the knee just sits there. It is the first part of my body to ever just stop working, and small as it is it scares the bejeezus out of me. We'll see what the GP says tomorrow. Until then--long pants and a latte.
@ Trfogey-- thanks