Hi Everyone,

I've been suffering symptoms very similar to KD for years and wanted to share my experiences and see if anyone can relate. So far, I have no diagnosis.

I'm a 31 year old male. When I turned 18, I started going to gym. I worked all of my muscles, except I noticed that doing calf exercises caused my calves to cramp terribly. Over the years, I adjusted, doing partial reps mostly, and when I felt the cramp coming, I would quit. In recent years, I've abandoned calf work completely because of cramps. I've noticed other muscles over the years cramp in the gym. My abs were next. I was 22 or so when I developed an intolerance for ab training. One set would cause me to hunch over in excruciating cramping pain. Sometimes, it would take 10 minutes to get the cramp out. Now, my triceps cramp after one set of pressdowns. I have to walk around and stretch until I can get the cramp out. Needless to say, I've mostly abandoned calf, ab, and tricep training.

I met my wonderful wife at age 26, and she introduced me to running. We started at low miles, and as our training increased, I began to get cramps. I fought through them, completing a half marathon, and worked my way up to a marathon. During the marathon, at mile 13, I got terrible calf cramps. At mile 17, my lats in my back cramped. After that everything seemed to cramp. I fought until we got to mile 25. Then, my entire body turned into one big cramp! I fell to the ground and considered giving up. I couldn't even walk because my body was locked up. They wanted to take me off the course but I said, "No. I ran 25 miles, I'm going to finish." With my wife at my side, I walked to the finish line in excruciating pain. Following the race, I looked on the internet and asked other runners if they experienced similar cramping. Aside from the occasional cramp, I never heard of anyone experiencing an entire body cramp like me. It was very strange.

Around the same time that I met my wife, I noticed that I had terrible posture. I tried so hard to stand up straight, but it seemed almost impossible. My head naturally slumped forward, along with my shoulders. I also noticed that my rear shoulders pulled forward, as if there was a weakness in the back of my shoulders. I began doing exercises to try and compensate for this. At times, I would get excruciating headaches in the back of my neck. We tried special pillows, little heated massage braces, muscle sprays, etc. My neck and shoulders have been a constant problem for me for years. Now, when I stand, my thumbs tilt toward my body naturally, because my shoulders are slumped. It's Simien Stance, which I've read is another symptom of KD.

After a few years of marriage, my wife and I went to the doctor to figure out why we weren't having kids. Two semen analysis tests showed zero sperm. We were stunned. I had previously heard of low sperm counts, but zero? It was a classic case of azoospermia. The doctor wanted to do surgery to see if he could extract sperm, but we declined, deciding instead to later adopt.

Around the same time, while playing at a softball tournament, I noticed my calves started twitching when I sat down to rest. I thought that I was dehydrated, so I drank a few gatorade's, but the twitching never went away. After 2 months, I decided to see a neurologist. I was worried about ALS. He did an EMG, even though he didn't think that I needed one, and the results came back negative. I had been researching my symptoms online, and due to the fact that I also had infertility problems, I asked if he thought I might have Kennedy's disease. He said, "No."

Although sensory issues are not used to diagnose KD, I've read that they can be common. After 18 months of twitching, I noticed that I started getting dizzy. Due to the fact that I suffered from dizziness and twitching, I went to get an MRI to check for MS. The results were negative. I then went to an ENT and he said that I have migraine associated vertigo. He gave me some migraine meds, but they didn't really help. I don't think I have migraine problems.

Today, I'm at the 20 month mark of constant calf twitching. My neck and rear-shoulders are more stiff and painful than ever. I've noticed dents in-between the almost non-existent rear shoulder muscles when I lift my arms. The muscle wasting/atropy is visually obvious at this point. Both shoulders show the same weak proportions, except my right shoulder hurts a little more. What's odd is the fact that my triceps are huge compared to my shoulders. My triceps stick out at least 2 inches from the back of my shoulder. It's really strange looking, but anatomically, it makes sense. If I do bench press and have very little shoulder support because the muscles aren't working properly, my triceps will do all the work and obtain the most growth.

Similarly, my quads appear small compared to my glutes and calves. Even though I can squat up to 350 lbs, the growth never went to my quads. They've always felt weak to me. My glutes took the load and the growth, much like my triceps.

Also, I've always had gynecomastia. When I was younger, a friend used to joke about it when I took my shirt off. It's not the worst case I've ever seen, but it's noticeable. Lifting weights for the past decade has helped cover it with muscle, but it's still there. In the gym, guys call it pirate chest, because it curves like a ship to each end. Evidently, people think it's the result of poor bench pressing form and not something hereditary.

I also have a split in my tongue, as shown in the KD picture on the following website (scroll halfway down) http://emedicine.medscape.com/...cle/1172604-overview
I've always wondered what caused that weird split.

Finally, I cough a lot when I eat or drink, especially hot food. One red pepper sends me into a coughing spasm that can last a minute. My wife usually laughs and teases, "Is it too hot for you?" Lately, I can't brush my teeth without gagging, and I've been experiencing a constant lump in my throat. It seems talking strains my throat too, now.

I'm sure I could think of more, but I believe those are all of my symptoms. I've had embarrassing moments, like playing softball and rounding the bases when my calves go out on me. I've hit the ground and everyone laughed. I'd fight my way to home plate and then spend a few minutes trying to get the cramps out. I've also had lots of knee problems from running, which I think have to do with a weakness in my quads. When my quads get fatigued, the pressure is placed on my knee. None of these things could be associated with KD on their own. But, taking everything together, KD seems to fit pieces of a larger puzzle.

In the past week, I've been developing foot drop on my left foot. It was really weak and painful for a few days, but surprisingly, it feels a little better. Having KD, does anyone ever have good and bad days with muscles, or is it constantly straight downhill? I didn't think the foot drop would get better but it now seems to be less troublesome to walk, even if it isn't 100%. I also think the pain in my neck and rear shoulders has gone away briefly over the years. Either that or I just grew accustomed to it.

Thank you for letting me post. If this sounds familiar to anyone, or if anyone has thoughts, I'd love to hear them. I feel like my symptoms more closely relate to KD than anything else. I have an appointment to see an endocrinologist in a few weeks, and I'm hoping to get the KD blood test. That should either rule out or prove my suspicion.

Thanks again for your time. I really hope to hear from everyone

Greg

Greg, thanks for sharing. Because KD impacts men in various ways, it is difficult to say for sure. Some of the conditions you mentioned sound like KD, but others and the rapid onset make me wonder if it could be something else. The DNA blood test as you mentioned will confirm if you have KD.

When I was in my late 20s and early 30s, cramping was extreme ... especially in the lower legs. Often, when I stood still, the twitching would run all over my body. My racquetball coach felt it was an imbalance and I needed more electrolytes. At the same time I was running, playing tennis and racquetball almost every day and lifting weights before my matches.

Have the test done. It is a simple way to validate your assumptions. The higher the CAG count the earlier the onset. From there you can move forwards.

I look forward to hearing from you.

Thanks for the reply Bruce.

I had a Cpk done a few days ago and it was normal. I was a little devastated. I was most certain it would be high. I really thought with 10 years of cramping, 2 years of twitching, and azoospermia - KD was a match. Now I have to start considering ALS.

I'll keep you posted.

Greg

Greg, not having an elevated CPK does raise a flag. Mine and many others I know had much higher than normal counts early on. I would recommend seeing a neurologist for further evaluation and testing. Good luck and keep us informed.