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any advice? don't know what to do...


Forum: Autoimmune Diseases and Disorders

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  #1  
August 1st, 2007, 11:31 AM
rabbitranch's Avatar est. 2000
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First, so sorry this is so long and involved! I'm just hoping someone will see themselves in my story and can give a little advice on what I should do next. Some or all of this may be related - or not. I'm sharing it all just in case it's relevant.

A little background on me - at age 11 over the course of a weekend my left elbow became excruciatingly painful. It locked in the L position. I saw a doctor, x-rays showed no breakage. His guess at the time was juvenile rheumatoid arthritis. My parents were poor, we had no health insurance, so I suffered in pain for many months and it took a long time to regain complete function of my arm. I had pain off and on after that but never so bad. At age 24 it is now mostly gone.

By age 15 I was getting weird burning, painful, tingling spots on my back; two of them, one on each side in the area over my shoulderblade (still very much in existance). By age 17 I was enduring excruciating, sharp, lancing, stabbing pain in my left ear, with exremely sensitive hearing. This pain was frequent and eventually spread to the left side base of my skull, across my left shoulder, and down to the tingly spot on my back.

The pain has flared up again and is extremely painful. It feels like a knife is twisting in my left ear, left temple, and the back of my skull/neck on the left side. The pain is here at some point every day.

I also have been told I have an abnormality on a lung x-ray and am supposed to get a CT scan.

Here's my delimma - I have seen a ton of doctors for this already. I've seen 3 GPs, an ENT specialist, a dental surgeon, a neurologist, a neurosurgeon, an internist, and various radiology departments. I even went up to a major medical school and saw the head of neuroscience there, with no answers. I've had 4 MRIs of my brain, the arteries in my brain, and my full spine. I've had exams, I've had a needle EMG in my back, I've had a TMJ eval, tests for neuro function, bloodwork for lupus, rheumatoid factor, MS, infections, you name i t. I even had a tooth removed. I've taken medication for nerve palsy, for depression, beta blockers, migraines, MS, and narcotics. Nothing's been discovered and nothing helps.

I called it quits in Dec of 2005. I was sick of still hurting, with no answers and plenty of medical bills. I stopped taking every medication and got pregnant instead. Incidentally the placenta went haywire (4x too thick, aged prematurely, split into layers) and I got really sick and had a preemie, 10 weeks early (completely healthy, thank God!) Nobody has a clue why THAT happened either. I have nothing that says it's related to my previous problems but it is a very weird coincidence. That's when they saw I have an abnormality in my lung too - when I delivered early.


Anyway, loooooong story short. What do I do now? It feels like everyone I saw was looking at one symptom and not everything as a sum of its parts. I'm thinking maybe there's something systemically wrong with me. Who do you see? What sort of doctor do I try going to? I'm in so much pain once again that I have to try and get some relief. Thanks for reading and any replies.

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  #2  
August 1st, 2007, 08:12 PM
TheyGrowLikeWeeds's Avatar Platinum Supermommy
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I can't help you, but I just wanted to say I'm sorry you are going through this mess of unexplained problems. I remember before I was diagnosed with MS, I had some strange things happening to me. Loss of balance, loss of sensation, loss of circulation, double vision, inability to speak well, numbness, oversensitivity on one side, herpes zoster, and vertigo. All these over a three year year period with no answers. I had an MRI to see if anything was showing up,and medications to treat my symptoms. My doctor was convinced it wasn't MS, but low and behold, Aug 2003 when I lost the function of my right leg and foot drop, a lesion, clear as ever appeared in my brain MRI. Now my doctor was still trying to convince himself it was just a gait problem, but the other neurologists in his group knew exactly what was going on. There were even scars left over from the past problems I had. I haven't had any exacerbations since, but at least I know what was going on and what I was facing.

I can't relate through my first 2 1/2 years before I was diagnosed with MS how these funny, things that were happening to me left me clueless and feeling lost. I knew it couldn't have been a bunch of separate issues. They all had to do with one thing, but at the time, my doctor just was hoping it was a bunch of separate things. It apparently wasn't.

I hope you find out what's wrong and can find some relief soon! It certainly sounds like your body is throwing you a bunch rotten potatoes!
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  #3  
August 2nd, 2007, 10:08 AM
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Sorry to hear about all the pain you've been having. Sadly, I think alot of doctors are schmucks who really don't want to take the time to figure out what's wrong, so they keep sending you to a different specialist. I know I went through years of doctors, physical therapy, weird tests (even one where they put me on a table and kept flipping me upside down to see if I would pass out ) etc.. before getting an RA diagnosis. I'm still not 100% sure that's all that's going on, but it's all I have to go on for now. So I can definitely sympathize with that part of what you're going through. A few thoughts I had while reading your story:

1. Go get that lung thing diagnosed.

2. Maybe a chiropractor or naprapath to help with the shoulder blade pain? Could be your spine out of whack?

3. Go get that lung thing diagnosed.

4. Don't give up until you have a dx. You just have to keep hounding the doctors until they take you seriously.
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  #4  
August 2nd, 2007, 10:17 AM
Colee's Avatar Platinum Supermommy
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I must say that I am one of the "lucky ones"...With my Ulcerative Colitis I was dx fairly quick. I started having problems and ignored it a couple monthes. By time I went to the Dr's I was bad and had severe UC on the left side of my colon....dx from start to finish in about 2 monthes. I was terrified and thought I must be dying,but once I learned what I had I was able to cope better.Even with my MS I was dx fairly quick-althought I had issues for years...it wasnt until I started going numb that my Dr did the MRI and saw the lesions. The of course,I needed all the tests that prove it was MS...so that was start to finish about 2 monthes. I know how scary this must be for you. You know something is happening,but no one can give you anything concrete. I'm sure at times you feel like it's all in your head...but it isnt! Some people it takes years to come up with a dx...and thats just un fair! A frienmd of my dh has "probale MS"...I just couldnt imagine not knowing for sure whats going on.I wonder,can you go someplace like the Cleveland Clinic? Maybe large scale dx centers? I am just so sorry...Please stick around with us...post about your symptoms,anything!! I hope that someone out there will read it and can help. HUGS!!
Quote:
Sorry to hear about all the pain you've been having. Sadly, I think alot of doctors are schmucks who really don't want to take the time to figure out what's wrong, so they keep sending you to a different specialist. I know I went through years of doctors, physical therapy, weird tests (even one where they put me on a table and kept flipping me upside down to see if I would pass out ) etc.. before getting an RA diagnosis. I'm still not 100% sure that's all that's going on, but it's all I have to go on for now. So I can definitely sympathize with that part of what you're going through. A few thoughts I had while reading your story:1. Go get that lung thing diagnosed.2. Maybe a chiropractor or naprapath to help with the shoulder blade pain? Could be your spine out of whack?3. Go get that lung thing diagnosed.4. Don't give up until you have a dx. You just have to keep hounding the doctors until they take you seriously.[/b]
Exactly!! Great point about NOT giving up until you get a Dr that listens to you and is determined to find a dx!! We are all here for you now and through the dx period(and of course after). Dont give up!!!
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  #5  
August 3rd, 2007, 07:17 AM
the_elmel's Avatar Platinum Supermommy
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Uhg! This situation sounds so frustrating for you. I have no idea what to tell you. I think you need to keep searching for a doctor until one listens to you and is able to diagnose you. I hope you find one soon.
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  #6  
August 3rd, 2007, 10:29 AM
rabbitranch's Avatar est. 2000
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Thank you all so much for replying! I've decided to go ahead and find a new doctor and I'm going to go in armed with all my details written down so I can make sure they are seeing the big picture. I'll let you know what happens.
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  #7  
August 3rd, 2007, 12:39 PM
Colee's Avatar Platinum Supermommy
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Quote:
Thank you all so much for replying! I've decided to go ahead and find a new doctor and I'm going to go in armed with all my details written down so I can make sure they are seeing the big picture. I'll let you know what happens.[/b]
Definetly write down every single symptom you are having,even if it seems very minor. I remember at the time of dx for my MS I was urinating more often then usual....I didnt realize it at the time,but that is a symptom of MS(amoung many other things ). But I didnt mention it until I was reading symptoms and saw that...When you are having a symptom,write it down...how it feels,how long it lasts,etc...someone,somewhere will listen to you. And dont give up until they do!

BTW-I really like your siggie!!
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