Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
I'm new here. First time poster. I've been a lurker on here on and off for years. I'm not sure if this is the right venue for posting this but I figure I might get some insightful responses. If you don't have anything positive to say, I really don't need to hear it. Constructive criticism is welcome.
So my story is goes like this:
I used to be a really happy person. I had everything that I ever wanted in life. I was young and came from a wealthy family. I had my health and was very active socially and physically. I used to live in a beautiful area and would hike, ski, and camp all of the time. I had a girlfriend that I was truly in love with. I went to a decent college, had a lot of friends, had a busy lifestyle. I had a decent car and roof over my head. I used to travel every year which was my absolute favorite thing to do.....
Since then my life has progressed into a downward spiral. It first started when school ended in 2008. It was very competitive to get a job. Most of my friends graduated and moved back home but I wanted to stay out west. My girlfriend who I was madly in love with suddenly started acting distant. We broke up and I took it really hard. I ended up taking a crap job to pay the bills and to remain living where I loved. It seemed better on paper. The business was new and the owner was running the place into the ground. I made all of my money in tips but there was no business! I barely afforded to exist but I manged to save a few hundred dollars a month. Nevertheless, I stayed active. I lived alone and my life literally became work and outdoor activities. I motivated myself with a goal which was to work towards something better and to save enough money to take a trip of a lifetime one day. A year and a half later, I was in a skiing accident and had to get reconstructive surgery on my knee multiple times.
I had to move back home. I do not get along that well with my family. My life became all about physical rehab. I just kept telling myself that I would work my way out of the situation and get back on my feet. The swelling and pain wasn't going away. Two years go by. I progressively started to develop other symptoms that made me realize that I must have other health complications. I started to have muscle spasms and involuntary twitching. Dizziness to the point where I can't drive without getting the spins. Extreme muscle stiffness and pain throughout my body. The stiffness is so bad it hurts to walk some days. Shooting nerve pain all throughout my body. My stomach twitches/quivers and I get horrible cramps. I have constant diarrhea. Sometimes it's so bad I can't move for an hour. I have a very loud ringing in my ears that comes and goes. Sometimes it's so loud that it sounds like a siren. Sometimes my hearing just goes completely out but comes back. It's been getting worse with new symptoms just coming out of nowhere. There is more but I don't want to make this too long.
I've been to every type of doctor I can think of. I've seen: rheumatologists, neurologists, general practitioners, gastroenterologists, celaic disease specialists, dietitians, etc. Everyone keeps telling me I'm fine which I obviously am not. They do a few blood tests/urine tests and ask me a few questions and that's it. The symptoms are severe and I would never exaggerate this. I've lost my freedom and I don't know how to get out of this hole.
Does anyone have any advice on how to find a decent doctor? Has anyone ever had a non-diagnosed disease? If so, how did you get it sorted out? Thanks.
You did not say specifically where you live, but perhaps the Mayo Clinic or the Cleveland Clinic, or a University Medical Center with an Ivy League medical school would be interested in your case.
A psychologist... I kind of walked into this one with my back story. It's not that I'm not open minded but I know for a 100% fact that this is something physical. I have hard time believing that just being down mentally can cause serious physical pain. I believe that one's mental state can influence pain; however, I'm not convinced that it can cause severe pain in and of itself. I could also believe that it can help lead to the development of a disease but not be the sole cause. Honestly, I think that a lot of doctors use this as a way of rationalizing what they don't know so that don't have to admit it to their patients or to themselves....
It's not that I'm walking around feeling severely depressed everyday. I've rather adapted; I continue to get on with my life but in a different way. I've gotten into building things and art. I've done a lot of things to try and improve my situation and find pleasures in the small things in life. If anything, if I ever feel like myself again, I will have gained a lot of perspective from all of this. Nevertheless, I do wish that I felt better and could be physically active again. Mentally, I'm in a much better position than I was a few years ago as I have adapted to the situation. Physically, I've never been worse.
I believe it's a neurological disorder of some kind. I get these electric like shocks and tremors. The muscle stiffness and nerve pain is what is really holding me back the most.
I believe it's a neurological disorder of some kind. I get these electric like shocks and tremors. The muscle stiffness and nerve pain is what is really holding me back the most.
And none of the neurologists have been able to diagnose this.
Okay, short story (at least I'll try to keep it short).
A friend of mine in Texas began having extreme muscle weakness and fatigue. He went to a wide array of specialists, just like you. No one could figure it out. I found a "medical mysteries" doctor in Manhattan. He was able to get a consultation with that doctor.
The workup and history found nothing and he returned home disappointed.
However -- some weeks later a neighbor mentioned she had had to get rid of her memory foam mattress because she'd developed an allergy to it. He realized -- THAT WAS IT. This all started when they bought their memory foam mattress. The medical mysteries doc had asked him if anything had changed in his environment but my friend didn't think of the mattress.
So they ditched the memory foam and got a 100% cotton mattress. His symptoms started to diminish. Last I heard he had regained most of his strength.
Two questions:
1) Did something change in your environment?
2) Have you tried physical therapy? Your reaction to PT might be more informative than a list of your symptoms. I see you had rehab after your skiing accident but what about since then?
Fluffythewondercat, thank you for the thoughtful post.
In regards to a changing environment, I did start drinking black tea a few years ago. I drink it every morning. I could quit caffeine and see if that helps.
Other than that just being back home. After my first few months of PT here in MA, I flew back out west. I lived there for a while continuing PT. The swelling was intense. I would work really hard to decrease it only to work on my muscles again and have it blow back up. They ended up doing surgery on my knee again because the inflammation wouldn't go away and they thought something was wrong. My second recovery wasn't as bad initially because it was a less invasive surgery but for almost two years my knee was swollen. It eventually went down but it still blow up sometimes as do my other joints. The other symptoms started appearing during the second recovery. Before my surgery, I felt normal. After the surgery, I was never the same again.... I tell doctors that and they say it makes no sense. It very well could just be a coincidence.
I did have a few people suggest allergies to me. A light bulb went off in my head when I first thought about it. I saw a holistic professional that tested me for allergies. They told me that I had a slight reaction to gluten. I was very hopefully and cut out all gluten out of my diet. I have not eaten any gluten for years and it does not seem to have helped much. I also cut out alcohol and coffee as they were bothering my stomach. I went to get tested for Celiac disease and they said that I don't have it.
Another person said that I might have metal poisoning. That's next on my list to get tested for.
I got tested for tick born illnesses and I came back negative. I was hoping it was Lyme's diseases.
healthgrades.com cross-check with ratemds.com look for a neurologist in your area in the best-respected clinics, I think you need to start with a "brain" neurologist (there are also "spine" ones).
I feel bad for you. When people tell you nothing's wrong when you know doggone well something IS wrong, then you start getting looked at funny. People start thinking you must be crazy.
I don't know where you are in regards to health but if you are this far into really wanting your health back then it's imperative you keep your body toned up and at a good weight. Feed your body a good steady diet of healthy stuff. The older we get the harder it gets but the more important it is.
Doctors are not really up on nutrition and homeopathic medicine. And many of them are so in bed with the pharmaceutical companies it's hard to trust them. I think you should simplify your diet and eliminate everything until you can isolate possible culprits. For example (only an example), eat only green beans (or pick one...kale?) for veggies. Eat tomato, carrot and onion salad. Eat sweet potato. Then pick a protein. Beans. Purple grapes for dessert. And maybe dark rye bread. Don't vary your diet for about 3 weeks and see how it affects you. Be sure to take a multiple vitamin. If I felt like you do I'd be willing to try anything so don't say "I could never control my diet so strictly".
And for the overweight people who complain about their knees...
I got tested for tick born illnesses and I came back negative. I was hoping it was Lyme's diseases.
You must really be in torment. I can't otherwise imagine anyone wishing they had Lyme disease. I suppose a dreadful diagnosis is better than no diagnosis at all.
Sigh.
When you said your joints blow up, I thought RA, but you said you'd seen a rheumatologist.
Here's the "medical mystery" doctor in New York. It might be worth contacting him.
Please register to post and access all features of our very popular forum. It is free and quick. Over $68,000 in prizes has already been given out to active posters on our forum. Additional giveaways are planned.
Detailed information about all U.S. cities, counties, and zip codes on our site: City-data.com.
Please register to participate in our discussions with 2 million other members - it's free and quick! Some forums can only be seen by registered members. After you create your account, you'll be able to customize options and access all our 15,000 new posts/day with fewer ads.
