Follow up from previous post

[Closer0043]

I previously posted on this site under the title convinced. I had every ALS symptom listed on every medical website out there. I stayed in my house for nearly 5 months with no improvement. I saw 2 different neurologist and received a clean EMG and a confusing NCV according to my doctors. They diagnosed me with idiopathic mild sensory axonal polyneuropathy. If you are looking for more information about your symptoms that may or may not lead to ALS, I advise all of you to sign up at the Mayo Clinic message board. I have learned so much from moderators there, and they actually let other patients wirh the same questions and symptoms respond to postings and give advice as to what treatments helped them.

I just had a follow up with my neurologist at U of C in Chicago. They were happy with the progress I have made since our last visit over 3 months ago. My doctor said he wasn’t surprised that I was improving. I told him he should have been better in letting me know that 3 months ago. He never mentioned I would start improving at that visit. He was very aloof and gave me no real course of action moving forward. Like I tell everyone since this started, doctors know very little about the central nervous system. I call it the bottom of the ocean in the medical world. He wants me to return in 1 year to see him.

Now for the good news. About 3 weeks ago, I started noticing my muscles were actually responding at the gym. I literally made no improvements for 4 months. My leg muscles especially were just giving out and feeling fatigued and cramping halfway through warm up sets. My last leg workout day I was able to push 230 pounds 10 times on the sit down legpress machine. 1 month ago I was still at 90 pounds. I am also starting to do some squats on a machine and modified deadlifts. It’s like whatever nerves were compressed in my body have finally started to heal or get some breathing room somehow. I still have a long way to go, but I now have a little hope after 5 months of none. I am scheduled to see a neurosurgeon at Rush in Chicago next month. I have been diagnosed also with severe spinal stenosis in my L4-L5 and severe foraminal narrowing in my L5-S1. So I’m hoping they can surgically give my compressed nerves more room to function, and I hope they are not so damaged that they can’t fully recover.

Here were my symptoms after my weightlifting injury on New Year’s Eve and where I am now. 1-5 scale:
Fatigue. Jan-5. March-4 Now-2 (some days still 3)
Night Sweats. Jan-5. March-3. Now-0
Finger Numbness. Jan-3. March-2. Now-1
Toe Numbness. Jan-4 March-3. Now-2
Upper Body Weakness. Jan-3. March-3 Now-2
Lower Body Weakness. Jan-4 March-4 Now-3
Breathing Problems. Jan-3 March-2 Now-1
Twitching. Jan-5 March-4 Now-2
Ear Ringing. Jan-0.March-3 Now-2
Dizziness / Foggy. Jan-4 March-3 Now-2
Digestion Problems. Jan-4 March-2 Now-1
Hand Edema. Jan-0 March-3 Now-2
Erectile Dysfunction. Jan-4 March-2 Now-0
Cramping. Jan-3 March-2 Now-1
Head Pressure. Jan-4 March-2 Now-0
Joint / Nerve Pain. Jan-0 March-2 Now-3
Myclonus / Hypnic Jerks. Jan-5 March-2 Now-1
Weight. Jan 204 March 208 Now 215. (Time to diet!)

As you can see, everything has improved other than my nerve pain which makes me happy. My PT lady kept asking me if my back was in pain in March during therapy and I would usually tell her no. Then I would say I want to feel pain and she couldn’t understand. I told her I will take nerve pain over numbness any day. That means the nerves are working again.

I also told my neurologist that I recently saw a study that shows obese people are 31% less likely to be diagnosed with ALS. He said he also read that, but they can’t figure out the reason. I’m no doctor, but logic would tell you that if football players are 6 times more likely, soccer players 3 times, and baseball players 2 times, then obese couch potatoes probably don’t destroy their nerves as much as active people. They will probably spend billions to figure that one out.

Last but not least, I would like to thank the advisors on this site who tried to talk me down off the ALS rabbit hole. I’m actually still not totally convinced that I’m totally in the clear even after all of my improvements. I still have some bad days, but usually only a few bad hours every few days where fatigue will still strike out of nowhere, but they are starting to waner slowly but surely. I appreciate your dedication, and I hope you let this post go through because a lot of people need more information than this site knows about or will allow in an open forum.