I'm not necessarily asking any questions here; this is more of an overview so that I can gather my thoughts before my appointment on Monday. Although, if anyone has any advice, information, or anything at all to add, please feel free.
My first memorable symptom started about 3.5 years ago, right before my 23rd birthday. It was erectile dysfunction. I did not treat it as a serious sign of anything. I basically assumed it was my fault, like nervousness or something. Soon, I realized it had nothing to do with any perceived social pressures as the problem persisted even when I was alone. I tried Zinc and Saw Palmetto everyday for the next year or so, with no results.
Eventually, this condition wore my mind down and I had a very strong bout with anxiety attacks. After 3 weeks of barely being able to function I finally saw a doctor. Stupidly, I did not tell him about my ED. He prescribed me Zoloft with very few questions asked and I proceeded to take the drug for the next few months. Miraculously, my sexual function was restored, albeit with minimal sensation and a difficulty achieving orgasm. I did not mind. Suddenly, I felt like a young man again.
During those months, I started to notice lots of random neurological symptoms. My legs would fall alseep at the slightest bit of constriction. Pain in one eye. A general off-balanced/lightheaded feeling. Extremely cold hands/feet even during activity. Very painful pins and needles feeling on my chest after a shower or during a workout. Sharp, stabbing pains in isolated places all over my body. A mysterious injury to the heel of my foot, that resulted in a burning sensation when my leg was stretched.
Eventually, I made it back to the doctor who prescribed the Zoloft. He listened to my complaints, told me I had plantar fascitis and that everything else was just a side effect of my anxiety, and that "at some point you have to play the cards you are dealt." I left his office feeling so cheated. I believed I was being sent away because I didn't have health insurance. Now, I just presume he had made the assumption that I was a hypochondriac. I calm my contempt for this situation by blaming myself for starting the doctor/patient relationship off without being forthright with all of my symptoms on the first visit. Would this have changed anything? I don't know, but my own irresponsibility haunts me to this day.
After my initial anger, I decided to stop taking the Zoloft. If all of my problems really were in my head, I was going to fix that by getting back to the way things were when I didn't have any problems. No drugs, no side effects. My ED returned immediately, and no relief was found for the neurological symptoms. For several months, I was depressed. Summer came and I was feeling much better, as seems to be the case every year. Fatigue and pain levels always seem to decrease with the mild Pacific Northwest summer.
Around August of 2009, I started noticing urinary symptoms, as in a burning sensation before, during, and after using the bathroom. Tell anyone this, and they automatically assume STD. The problem with that diagnosis is the huge gap that occurred between my symptoms and the last time I had sex. A month went by and the urinary symptoms worsened. Feeling like I never wanted to waste my time/money/hope on a doctor again, I started researching the internet for what was wrong with me. Anyone who has been down that road before knows just how dark that place is. I settled on prostatitis. It didn't make sense for me to have BPH for no specific reason at such a young age, but I was 90% sure I didn't have an STD. Upon researching prostatitis causes that could potentially suit me, I stumbled upon the old Candida factory of websites. It scared the heck out of me enough to see a doctor, because I didn't want to believe that I had something seemingly so impossible to cure.
I started calling offices to establish a new primary care provider, only to get "We aren't accepting non-insured new patients at this time....blah blah blah" each and every time. I finally settled on Planned Parenthood, when I realized they do have a (very limited) men's health service and they could get me seen within a matter of days. So I was seen by a clinician and I made sure to tell her everything. I was not going to make the same mistake twice. I even mentioned my fears of a systemic Candida outbreak. She took a look at me and said it didn't look like yeast to her, but she prescribed me a cream anyways. Needless to say, it didn't work. I also got a general STD test which came back negative. With another failed doctor visit upon me, I delved deeper into the Candida abyss.
I was desperate at this point. The things I read said how difficult a yeast infection was to treat, especially in males. Diet was key. I went full bore into an anti-yeast diet. No sugar, no caffeine, organic meats only, extremely low carb intake. Immediately, I got sick, but that was a good thing, because they tell you that's just the yeast "dying off." So I stuck with it. I bought tons of supplements. Probiotics, natural antifungals, threelac, etc. My gut started working better than ever. After three months of depriving myself of every vice I ever enjoyed, I realized that I wasn't making headway in the areas that I initially set out to improve. I stopped the diet almost completely cold turkey. Just another in a long line of mistakes I have made concerning my health.
The urinary symptoms continually worsened. I decided to take a break from trying to cure myself. To see if I could free my mind of everything. Maybe if I stopped worrying about it, it would all go away. I started working on improving thought-processes, and not allowing myself to dwell on the way things were. I tried to start exercising more. Before these things started happening to me I was extremely active, and was always motivated to play sports and stay in shape. I knew that my levels of activity had dipped to an all-time low, but I didn't attribute it to anything besides the weak mental state I had been in for so long. As I started a routine, I realized that I wasn't just out of shape and depressed. There were major physical factors contributing to my lack of exercise. It started with pounding headaches as soon as I started to work up a sweat. Those calmed down, but never went away completely. Next, I noticed swelling in my legs. When jogging, my calves would get extremely heavy and if I tried to fight through it my feet would go numb. Thirdly, on days when the other two things weren't bothering me, my back was. Eventually, after 6 or 7 weeks of training I gave up my goal of participating in the 12k run my town puts on every year.
As the yeast experiment had died, I decided to return to Planned Parenthood. I knew yeast wasn't my problem, and an STD wasn't my problem. Could it be a UTI? I went back with this theory in mind. The symptoms matched, but she wasn't convinced because of my age. She did a culture anyways that came back negative. She gave me antibiotics that treat "some urinary problems." They did not work.
It was also around this time when I first started feeling a pressure behind my tailbone whenever I sat down. It confused me because it would feel like I had to have a BM even if I had just gone and emptied everything. This lead to lots of unproductive straining and quickly inclined me to invest in a new computer chair. The new and improved lumbar support was nice, but it didn't take the numbness away. I wondered if this was my prostate showing signs of inflammation. It was also around this time that I started getting sharp, wrenching pains in the front of my pelvis when sitting and laying down. I returned to Planned Parenthood to get a referral or advice on what to do next. The woman I talked to concluded I probably had a "structural problem." I wasn't sure what that meant, but she told me to see a urologist so I assumed she was talking about my prostate or bladder.
Along with all of this, I had a separate tooth issue going on at the same time. I had begun taking aspirin everyday just to manage the pain. Within a couple of weeks I realized that my mouth was the main priority I had to address. This set me back pretty good financially as I had developed a major tooth infection and needed oral surgery immediately. I was on a heavy dose of the antibiotic Clindamyacin for 17 days. This caused a CDL infection in my GI tract that I didn't realize was occurring until I finally saw a urologist 5 months later. This brings us to last month (November 2010).
When I saw this urologist and explained some symptoms to him he determined that I had two problems. One regarding the prostate which he addressed with Flomax, and the other an intestinal problem that I needed to see a GI doctor for. I had blood work and a stool test performed by my GI doctor who found the CDL infection. I took Metronidazole for 14 days and I believe the infection is cleared up (which is nice, but I would have never known it was even a problem without my Dr. saying so). My follow up with her is on January 3rd. As for the Flomax, it improved only one of the many symptoms I'm battling in that area. When I told my urologist what I was still experiencing at the next appointment, he conceded that he cannot help me. He believes I have a primary problem causing all of this, as in nerve damage in my spinal cord. He scheduled a cystoscopy for next month to check for strictures, tumors, etc. in my penis. In the meantime, I have finally gotten an appointment with a primary care provider which is just three days away, which brings me to this last week of developments.
On Wednesday, I developed very, very heavy legs and an increasingly sore lower back. These are both symptoms I have been experiencing for over a year, but they seemed to have leveled up in severity pretty significantly. On Wednesday night, I laid down for bed. Immediately my legs started feeling like stretched out rubber bands. I tried to get comfortable but there was just nothing I could do. Then the backs of my thighs started jumping all over the place. Eventually I was able to crawl out of bed and stand up. I tried to walk it off, but my legs just kept tightening. I could feel it radiating up my back into my neck and shoulders. My entire body was clenched . Eventually, my legs stopped dancing and I was able to get some sleep, 16 hours to be exact. I was very close to asking someone to take me to emergency. It was very scary. I've been extremely stiff ever since, and I currently move slower than an arthritic 80 year old man.
I want everyone reading this to know that this does not mean that I have M.S. I know the regulars already know that, but I hope something can be gleamed from what I have been through the past four years. Self-diagnosis is extremely dangerous, and self-treatment even moreso. If you are seeing a doctor that you don't agree with, don't give up and try to do it on your own. Keep yourself educated, but don't make up your mind on what is wrong with you on your own. Stay persistent. Find a doctor that listens to you, and tells you when you're being crazy, because if you're actually sick, you're going to be thinking a bit crazily at times.
Well I think you should write down your time line with symptoms, when they started and stopped. Take in any test results that you already have had done. Don't be afraid to ask questions that you may have.
First and formost this is your body and you know something is wrong with you, you muct listen to your body and take the right steps to make sure you are ok, you deserve a name for what is ailing you.
As you know none of us are doctors around here but we can let you know that you are not alone in this journey, and it could be a long journey.
There are alot of MS mimicks out there so they have to rule those out before they can dx (diagnose) MS. I am hoping it is something that can be fixed but if it does lead to a dx of MS then know that we are all here for you.
Thanks so much for the welcomes and advice. I will keep this post updated as my tests and treatment go. I can honestly say I feel better about this being a success story than I have since it first started. I may be at the physically weakest point in my life, but I also feel I'm tougher mentally than I ever have been. I have whatever this is to thank for that. I truly believe that no matter how much of my life I end up getting back, I will live my life more fully than I ever did in the past 26 years. It helps so much to have people you don't know show so much support. I will surely do my best to pay that forward.
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