Hello all! New to the forum and I would really like to see if anyone has experienced what I am going through, or as some input.

I am a 51 year old male and in good overall health other than this PN in the legs and orthopedic issues in the right leg, which is the most affected leg of the two with PN (as of now, and of course-right?). I have been an elite level bodybuilder and powerlifter for over 25 years. I have maintained a large amount of muscle mass all over even up until this day (except for the distal right leg due to the muscle atrophy related to PN.

Here is my story: Approximately 7 years ago, I took a flight to a bodybuilding convention as coach for an athlete. I was a solid 340 pounds at 5'11". I barely fit into a first clase seat, but I was not uncomfortable. There were no issues in flight. Upon landing, my right lower back began to hurt and I figured it was just a muscle issue due to the flight. Well the pain got worse over the course of 6 hours to the point where I had to take a pain pill as Naproxen was not helping. That did help, and I was able to continue the trip with improved right side back pain, I flew home and the pain subsided to only mild discomfort. There were no other symptoms.
Around 5 days later, I was at the gym as usual doing hamstrings. I acutely had ~ 25% decrease in strength in the right leg/hamstring with only mild right side lower back pain. I continued to monitor this over the course of 2 months. The weakness never worseened, but it never improved. I ended up seeing an OS, and an MRI was done that showed mild to moderate degenerative changes in the lumbar spine. There was lumbar stenosis central canal stenosis found and
it was mentioned, however it was not to any degree to be concerned at that time. I elected to pursue epidural steroid injections, and by the time I was there for that ( ~ 2 wks later), the lower right back pain was basically gone but the weakness in the right hamstring persisted ( no worse). The steroid injections did nothing.

Fast forward 1 year ( ~ 6 y ago): I began to have right calf muscle weakness (mild) along with the continued right hamstring weakness ( no worse, no better). I had very muscular legs, and was able to compensate for this weakness with no issues. I was still lifting heavy at the gym, however, it was becoming difficult to work the right calf and hamstring, but I did not mind as I was still very strong and no longer was competing. I maintained a massive amount of muscle bulk and felt fine/looked good.

Around 4 years ago, the right calf muscle weakness started to worsen. I still kept going strong at the gym. It was at this time, I began to note some mild right calf atrophy. The left leg was fine with no issues. It was around this time that I began to cut down some bulk. I was sitting comfortably at 315 pounds and felt great.

Exactly 2 years ago, I acutely herniated the L3-L4 disc with right side extrusion. The right back pain was severe and over 3 days, I began to experience classic sciatica symptoms in the right leg as well. There was severe central canal stenosis also at the L3-L4 disc. I saw 2 neurosurgeons over the course of 2 months for opinions. I could no longer flex the right calf ( go up on tippy toes). The first neurosurgeon told me I would be looking at 'many back surgeries over the rest of my life". I then seeked a second opinion. Ultimately, I opted for a right side L3-L4 laminectomy, fasciectomy, and discectomy(LFD) with him also exploring the right side L5-S1 segment as my neuro symptoms were showing L5-S1 deficits in the right leg. At this time, symptoms in the right leg were mixed and indicative of L5-S1 involvement but the MRI's were not showing any major nerve segment compression. Therefore, the neurosurgeon was reluctant to do anything at that level surgically. His goal was the L3-L4 LFD and he would see how the L5-S1 appeared intraoperatively. I really really wanted something surgically done at the L5-S1 level at this time as my deficits were worsening. Anyway, during the surgery, he did not see any reason to address the L5-S1 segment as it appeared "fine and ok". He did do the L3-L4 LFD and I recovered with no sciatica symptoms in the right leg.
Over the last 2 years since the right sided LFD, I have had further decline in right calf strength with further atophy. I have had 2 EMGS over the course of the last 2 years. The first one was done 8 months after the LFD and it revealed chronic and active distal leg nerve deficits coming off the right side L5-S1 level. The left leg was not tested as it was fine. After that EMG ( April of 2022), I continued to have worsening weakness in the right distal leg and calf atrophy. There had been some right hamstring atrophy as well, however, it was not causing me any issues. A follow up lumber MRI showed resolvent at the L3-L4 level, no longer stenotic and no worse degenerative changes. I continued to see my neurosurgeon and expressed my concern for gradual worsening of the right calf strength and atrophy. He referred me to another neurologist for a repeat EMG this past April. I ended up having both the right leg and the left leg tested by EMG, and this time, she really got deep in the muscle, and I feel got good results. She was stumped on findings. Ultimately a mononeuropathy in the right leg and a mild polyneuropathy in the left leg. She diagnosed the origin of both coming off the L5-S1 nerve root segment. Incidentally, it was just before this EMG round that I began to notice a decrease in the strength of the left calf muscle. No radiating pain in either leg and mild intermittent lower back pain that came and went over the years.
I went back to my neurosurgeon to go over results of these EMG"s. He has been reluctant to do any surgeries as there is no back or leg pain: only weakness. He proposed a 4 level lumbar fusion as an option to cover all the bases as there are degenerative changes at ALL lumbar levels. I was reluctant, as was he. I proposed addressing L5-S1 only as this was what the EMG showed, and my neuro symptoms were strongly suggestive of this. I have some intact L5 function in the right foot(big toe dorsiflexion.

This Fall, I had planned to do something surgically, however another medical issue occurred involving the right knee that has taken precedence (VERY long story, and ongoing).
And that is my story... I have researched extensively, and I do have a strong medical background, medically trained.

Right leg symptoms so far are all distal, calf muscle and foot, with more lateral than medial involvement. These are: numbness, weakness and atrophy. My right foot: more lateral involvement than medial Dorsiflexion of the foot is moderate, and ventroflexion is intact however it is weak.

The left leg has continued mild calf weakness with no atrophy *yet*.

I do apologize for the long story- I do appreciate any input on this matter. I feel strongly that this is an L5-S1 issue that is bilaterally occurring.
Thank you!!!

Welcome bigmuscle Someone will be along.

--it would be more appropriately posted in our Spinal Disorders forum, as opposed to this one that tends to get more traffic for more systemic neuropathies.

Still, none of us are excused from being multiply morbid, and you may have more than one thing going on. There's even a term for this--"double crush phenomenon"--in which a more systemic cause for neuropathy is exacerbated by compressive injury, such that the symptoms may be more than the sum of the parts.

Have you had other testing for more systemic neuropathy etiologies?

Hi bigmuscle,

I'm not speaking as anyone with any special expertise. I've had MS for many years along with quite a few back problems--several bouts of sciatica, a spinal fracture, "moderately advanced degenerative disc disease" plus arthritis, and nowadays a very wobbly gait but then I take only about 1,500 steps a day and spend the rest of the time in a wheelchair. But I'm old and am not surprised that my back is giving out.

Also, I'm not counting on working out at a gym. I can understand your concern with the specific details of what is going on with your spine.

From my own standpoint--which is probably so remote from yours as to be laughable--I would avoid any and all back surgery. I've encountered too many authoritative accounts indicating that back surgery may be unnecessary all too often.
But someone as young as you, with your interest in bodybuilding, probably has a different level of concern--and may have been putting up with far worse pain than I've had.

So I'm sorry I can't be more helpful. Maybe just knowing about other perspectives will be useful to you in some way.