Finally, I think I've got it!

[mugmug77]

Hey All,


I finally know how to put out my symptoms on a thread....I had this tacked onto somebody else in here,
anyway, this is where I'm at.


It took me a while to write out this stuff. I don't like thinking about it much.


Here are my symptoms, how it started etc.


About 2 years ago I had a random, severe pain across my back between my shoulders.


At the time I was a light smoker (no more) and a wore a prosthetic that had a cable which ran across my back.


Of course I immediately assumed I had either lung cancer, or nerve damage from the cable of my prosthetic.


The cable made sense, because I was a horse trainer for several years and used the prosthetic beyond what it was designed for on a regular basis.


The cancer made sense to me because I had been a cancer patient through much of my 30’s.


In my normal way of doing things I ignored the pain as best I could and went on with my life.


The pain lessoned and eventually went away.


Then several (I think) months later the pain came back. It was so bad I had trouble breathing.


Again I ignored it as best I could and over a period of several days it eased off.


Within a year the pain in my back came back, wouldn’t leave and began to spread.


It now went up my neck into my head.


My face was numb across my cheek bones.


My neck felt fat and swollen, but wasn’t.


I finally went to a doctor.


I told him about my difficulty swallowing, this has gone on for several years. I can only eat if I drink several glasses of water with my meals.


I was started on a low dose of Neurontin and some muscle relaxers.


My pain became worse.


I had to quit training horses because I physically couldn’t keep up. I had days when I couldn’t even get on them. Normally I rode between 6-8 head a day.


I was having memory problems, periodic episodes of slurred speech and coordination issues.


I had a MRI on my head which was read by a radiologist and came back normal.


The PA  I was seeing was at the end of what he could do and I was sent to an internal medicine specialist.

He felt I should see a neurologist but there wasn’t one available in our health care system.


I have no insurance and get my medical care through our Community Health Centers.


Since then (another year) my situation has gotten worse. Sometimes I have trouble walking, I get along OK, but my gait is different. More awkward I guess. I have had MRI’s done of my neck and back which show nothing.


I am on Lyrica and Cymbalta  now. Due to a screw up with my medication I got to be off my meds for awhile. My pain was horrible.

It’s like a deep, deep sunburn with pins being stuck in for added fun.


The pain is spreading and getting worse. It goes around my ribs and grips, or crushes or something.


I have trouble with fatigue. Sometimes I almost fall asleep at work.


I work as a writer for a weekly newspaper now. Even this job is becoming hard to keep up with.

I can't sit in chairs anymore, so i sit on an exercise ball. It's interesting, the only places I'm comfortable is on the ball or on my horse.


My pain is constant but bearable.


When I crash the pain seems worse each time and when it fades it leaves me a little more messed up.


So there’s the bare bones of it. I still don’t have a diagnosis. I'm going to see a neurologist for the first time on Wed.

mugmug77

[rendean]

Good luck tomorrow. Your timeline with the few changes Shell mentioned is good. Alex's suggestion to let the neuro do his thing first is a good approach.  Many (if not all) neuros seem to have issues with their egos and don't like to be told what others think.

Just approach the visit with optimism and your list of questions written out so you don't forget anything.  If the dx seems strange to you , ask him if the dx fits ALL of your symptoms and if not, then what would he say about those symptoms and issues and what is causing those that don't fit neatly in to his dx.

You're prepared!! Go girl!  Let us know how it goes.

Ren

[addicted2harleys]

Good luck with neuro!

Addi

[mugmug77]

I hate this best answer thing. I appreciate and get something from everybody. I will eliminate the cancer/prosthetic part.
Thanks for all your support.
I

[Mand125]

Good luck at the neuro appointment.

Mand

[sllowe]

Hi there,

You did it!

Ok - now for  you appt. tomorrow. You explained the past and current very well. I think you are ready for this appt. and hopefully a good Dr. who listens. Only thing I would do is leave out what you "thought" it could be, i.e., the smoking, cancer, etc.

Also describe the pain you experience between the shoulder blades that took you breath away, etc.

Other than that I think you summed up what you have been experiencing very well. You described your symptoms w/out putting a name to them, which is good.

Is anyone going with you to your appointment? A good Dr. will ask you lots of questions after you describe primarily what is dibilitating you at this time.

ttys,
Shell