Discussions By Condition: I cannot get a diagnosis.

Joint Instability, Fatigue, Depression

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: tjvd2000
  • February 14, 2009
  • 05:21 AM

Hello! This is a last resort for me, as I have been dealing with problems relating to this for about a year, have seen every doctor imaginable, and seriously contemplating giving up, as I just can't get by anymore, and no one seems to have an explanation for me. I will do my best to explain my symptoms, and I pray one of you can help me defeat this and start my life again. I am 22 years old, male, 6'2" tall, 185 lbs, Caucasian, Dutch/Italian/English decent. My grandfather died of MD, grandmother died of Alzheimer's. My father has big hands, clubbed fingers, big knobby joints in the fingers, size 13 feet and is 6'4". I have all the same features although only 6'2". Also, have big, clubbed, knobby thumbs and big toe's. My story: Starting from the age of about 15, I noticed my toes started curling up which is classified as hammertoes. By the time I was 19 and 20, the left foot's toes were pretty much fixed curled and bent up at the MTP joint, and the right side was still flexible but also bent up at the MTP joint. They both had large calluses on the bottom of the forefoot. I went to see an orthopedic surgeon who classified them as claw toes. I also had very high arches and tended to hyper extend my knees while standing as a bad habit. Although I had no real problems other than ugly toes and pain when wearing shoes from rubbing on the bent toes, the doctor recommended surgery to straighten the toes. Iwent into surgery, and when I came out I was told because the toes were more fixed than he thought, he had to perform a Weil Osteotomy on the MTP on both feet, as well as arthroplasty of all the lesser toes. I had pins in all my toes. I stayed off my feet the next month and then had the pins removed after 30 days. The next month, I walked around in a pair of those "cool" boots that make u walk on your heels. AFTER SURGERY: Back 2 work after two months recovery, and still had a lot of pain when I put weight on the middle to front of my feet. The doctor told me to walk it off, as I had to get used to walking on my feet again. I walked through the pain, though at times it was unbearable. I started running on the treadmill and remember getting some really bad pain in my shins (they felt like they were broken, hurt so bad when weight bearing). Finally, after a few weeks the pain went away. Fast forward a few more months...the pain seemed to be less, but my forefeet would swell up upon standing for long periods,walking, or especially running. my foot from the forefoot to the toes seemed pretty useless, but I wasn't worried because the doctor warned I would loose the curling function in my toes. I started running a lot and was up to about 5 miles a day, as well as working out.My forefeet would swell up so much that it would squeeze in my running shoes. I removed the padding in my shoes for more room, and it was much more comfortable for me while running. I ran without insoles the next few months with no problems except my forefeet swelling up.PROBLEMS BEGIN: 1 year post surgery. My forefeet began swelling more than before, my feet felt useless. It was hard to fit into normal shoes because of this. My feet also felt very weak and painful after walking. I also noticed my leg muscles getting bigger for no apparent reason. Over the next few months, I started experiencing weakness while standing and walking, especially in my feet and knees. There was an incredible amount of pressure being driven downward into the inside of my knee, especially while standing still. It became unbearable to stand on my legs more than a few minutes which made rides on the subway ***l. It felt like my knees were caving inward on the inside and backs of them. (I also noticed my pants didnt fit and it was tight on the inside of my knees and thighs. I saw a doctor about maybe arthritis? He didnt think so but prescribed me NSAID's. I took them to little avail. The pain, weakness in my legs, and horrible pants fit was getting worse and starting to affect me mentally as well as physically from the strain of standing on the subway and walking through the city. My gait was starting to become affected. My left knee would hyper extend while walking and I was off balance. I saw a podiatrist who prescribed me custom orthotics. They seemed to make it easier to walk which was a relief. A few weeks later though and my knee symptoms continued to deteriorate. It looked like knock knees in a way with a lot of pressure on the inside of my knees and backs of them, and by this time, none of my pants fit anymore. They just didn't drape right over my leg anymore, they were tight on the inside of my knee. I tried everything from stretching, to taking glucosamine, to vitamin b and vitamins galore every day but by this point I was suffering depression, anxiety, wasn't leaving my apartment anymore because of the vicious cycle of weakness on my feet, unsteady and abnormal gait, and people's stares at the way I walked and my pants fit. I started suffering from severe fatigue sleeping all the time and depression. I flew home again to see the podiatrist about my knees, and by now, the arches of my feet were collapsing and my feet ankles were pronating like crazy. He took my orthotics from me and sent them back for ones with higher arches to control the pronating and hopefully help my knees. (Again, I flew back to NYC this time without orthoics again and everything got worse and worse:( I couldn't deal with it anymore as I wasnt able to work and had no reason to be holed up in my apartment day and night so I gave up my lease and flew home to at least be with my family. This is where I am now..
SINCE I'VE BEEN HOME: I think the worst part is that my parents think its all psychological, when I clearly know that yes I was psychologically distraught, but something serious is going on with my body. All I want in the world is to be mobile and healthy again. Since this all started, my knees seem to have grown larger, my feet seem to have completely collapsed and my ankles and feet are unstable and my whole structure feels unstable when I stand or walk. I haven't gained any weight, and haven't worked out in over 6 months, yet the muscles in my legs have grown, and my knees seem to have grown, because none of my pants fit at all anymore, they are skin tight around the knees, and thighs. The bones on the inside of my knees stick out and my feet, then ankles, then knees, then upper legs all twist inward when i put weight down. It almost feels as though my heels are lower than they used to be, like im sunken down on the back of them. My heels do stick out and there a bump on the back of them below my achilles. My feet are also slowly but surely growing bunions and the area of my forefoot that was once so swollen is now hard as a rock. The MTP joints feel like big huge hard balls on the tops and bottom of them. Also noteworthy, it's hard to0 say for sure but it's just an observation, the length of my leg (femur) from hip to knee seems much longer than it used to be. It appears to curve inward as well. (I have somewhat wide hips for a male which could increase Q angle of hips, knees, and ankles) My main problems are: unstable feet/ankles/knees, weakness and unbalanced when standing/walking, depression, fatigue, and inability to find pants that fit because of the weird angle of my legs. To tell you the truth, I'm not sure if the bone structure of men continues to grow from the age of 21 to 23 but also my arms have been growing longer and most of the shirt I bought about 8 months ago don't fit in sleeve length or size anymore. I have actually lost weight in my upper body since then which doesn't make sense to me.
DOCTORS VISITS SINCE I'VE BEEN HOME: I went back and saw the doctor who performed the surgery. He said yes, I see what your talking about with pronation and knee pain, but took NO responsibility of it maybe being from the surgery. I had NO problems before this and since the surgery my life has went from AMAZING to a NIGHTMARE. He sent me to a neurologist to check for Charcot-Marie-Tooth syndrome. This new doctor had me get an EMG and bloodwork. Both came back normal. Went back a month later for the followup and he said it wasnt neurological. Went back to my GP, explained the problems with depression/fatigue/knee and foot problems/ asked about possibility of LYME/MS/Pituitary tumor/Marfans Syndrome/ect, he said its not LYME since we dont have ticks in upstate NY (doubt that) Wasnt marfans because my legs and arms matched, and wasnt anything else because they are rare. He prescribed me for zoloft for the depression which has helped me at least feel less depressed about the whole thing and come to s=some sort of terms with it. I made another follow up with the surgery doc which isnt for another 2 months because he's on vacation...could have guessed it. (I get the feeling he knows he screwed up because when I call and say my name the receptionist says oh....can you hold on one second? then the line is silent for 5 minutes and she comes back saying he's on vacation and the next appmt isnt for 2 months) I booked it anyway. I also recently went to see a spine/sports med who FINALLY at least took an xray of my knee and prescribed me physical therapy with a foot/ankle/knee guy. (Still waiting to hear results from xray) The most depressing thing to me is that I look at my legs today, and these are NOT MY LEGS I had 8 months or so ago! My knees seem bigger, they are shaped different, they feel different, and I cant wear any decent pants anymore. And thinking logically, unless they can re-allign my knees or re-place them or something, I know I will never be the same again. I don't know if I should pursue legal action again the surgical doc or what, and I have no clue what is happening to me. ANY advice, suggestions, similar experiences, ANYTHING you guys have to offer is better than nothing. Please feel free to comment with your thoughts and ideas.THANK YOU and GOD BLESS!

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