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What symptoms sent you to the Drs & how were you Dx'ed? (Anyone see a neuro)

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Old 12-01-2008, 05:03 PM   #1
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What symptoms sent you to the Drs & how were you Dx'ed? (Anyone see a neuro)

Hi.........Can any of you tell me how this all started & what was it that sent you to the Dr's? I literally woke up one morning & just had widespread pain. Clear out of the blue!

been through TONS of testing & just still dont know.

Have you all been through lots of testing? Muscles & all??

Thx for your help!

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Old 12-01-2008, 06:24 PM   #2
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Re: What symptoms sent you to the Drs & how were you Dx'ed? (Anyone see a neuro)

I had a widespread variety of symptoms that I never connected to one problem. I would go to one doctor for this kind of symptom, another doctor for another kind of symptom. I went to the rheumatologist a couple of times for the widespread pain issue. First time he diagnosed arthritis. When I went back for a follow-up, I asked him if the pain could be due to FMS. He then diagnosed FMS. It wasn't until much later that I found another doctor that treated FMS exclusively. This guy was able to connect the dots to all my other symptoms as being the due to FMS. Isn't this fun?!


Old 12-03-2008, 02:14 PM   #3
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Re: What symptoms sent you to the Drs & how were you Dx'ed? (Anyone see a neuro)

Unfortunately, I've had this illness for over 25 yrs so I have been to every doctor imaginable. I went 8 years being told I was imagining my symptoms; all in my head; etc etc. Finally was diagnosed and helped the most from a neurologist.


Old 12-04-2008, 03:22 AM   #4
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Re: What symptoms sent you to the Drs & how were you Dx'ed? (Anyone see a neuro)

Hi Sorry, but like normal, I'm sure this will be a long answer...

I have had Fibro for either almost all of my life, or all of my life (we can't exactly pinpoint it, not enough information)
When I was born, my mother had a hard time with labor, and 30 years ago, it wasn't like today... 27 hours of hard labor, and I was breech, sunnyside up, and the cord was wrapped around me. I showed symptoms from then... BUT, when I was four, I had a nasty fall that split my skull right above my c-spine, then my symptoms seriously increased (most noticeable was my speech & hearing, I lost most of my hearing, and no longer talked~which went away with speech therapy for years, now I don't shut up... and I was super clumsy, I would be sitting at dinner, reach for a napkin, and fall~or some similiar situation)
When I was in 3rd grade, it got so bad, that the state became involved. By the time I was 14, I was removed from public schooling (unable to cope w/ peers & pressure of school) Thankfully the state put me in a special tutoring program, but still, I wasn't like everyone else.
Then the depression set in. I was suicidal and spent 3 months in an institution (I was by then a ward of the state) and was medicated for a couple years for it (I was a veggie, seriously) When I was 18, I was able to pick up some life... I took control of my own life, quit those meds, and moved out of the state...

My Rheumy believes that I had it when I was born (in a predisposed sort of way) and the accident just made it complete.

My biggest problem is, I was only recently diagnosed (it took 29 years! I'm 30 now) I spent lots of time, money & stress trying to figure out what is wrong with me. I went through the entire, it's all in your head... my pediatrician diagnosed me as a hypochondriac when I was in about 2nd grade (YEAH I knew what I was doing then) A couple years later, my appendix ruptured, instead of sending me for tests he told my mother "Well, we know she makes up things, just feed her some jello, she'll be fine" Five days later I had emergency surgery, after my body shut down. My mother, OH MY GOD, did she ever give it to that Dr!!

I've gone through several surgeries (over 30) I am now unable to have any more children (thank god I have a healthy son!) since they thought it was my uterus causing all my problems and removed everything... it's always the same story, OH you have this... lets medicate you, oh that didn't work... okay, see this specialist... that didn't work... see this surgeon... here, I'll remove this and that... oh sorry, that didn't work... try again!

I have not worked for almost 4 years. I am now disabled, I need a cane to walk more than about 15 feet, I am very blessed to have a supportive husband, and loving parents (including inlaws) that all live very close by.

I am unable to things alone like...
Raise my son (I can't bring him places)
Grocery Shop (I can't push the cart)
Drive distances (I can do about 20 minutes)
Vacuum the house (I shake after about 5 mins, I can do it, it takes all day)
Carry the Laundry baskets
Ok... I am unable to do basically anything that takes any sort of physical movements... I completely depend on my family now to help... It wasn't all like this all the time... The pain was just there before and not crippling like it is now... that started about 4 1/2 years ago... and didn't become a constant issue until about 2 years ago. Now my 'flare ups' last months at a time, and even when I'm not flaring, I still have major issues, it's just not as painful then.
I was just in the hospital (for like the millionth time) For a major spinal fluid leak, I just found out, after all that, That I've had fluid leaking for years..

I have a series of diagnoses... Fibromyalgia, Probable MS, Chronic Fatigue Syndrome, "stroke" migraines, Chronic Cerebral Spinal Fluid Leaks, BiPolar Depression, Adult ADD, Bruxism (teeth grinding @ night, everyone of my teeth have broken, and either have been fixed, pulled, or are now fake) Irritable Bowel Syndrome, Endometriosis, Pelvic Inflammatory Disease, Scoliosis, I'm sure there's more... but I'm unable to recall them at the moment...

I have had all the blood tests, spinal tap, xrays, CTs MRI & MRA's, stress test, colonoscopies (3), PET scan, various pathology done on different things (to find other answers, like cancer etc), Vision tests, EEG, EKGs, Hearing tests, ...I'm sure there's more things for this list too... lol (I also have a bad memory LMAO)

Anyways, I've been in a life long struggle with this disease... But since I've been diagnosed, things have changed drastically. I now have an awesome "team" who all work together, My PCP, Neurologist, Rheumatologist, and Physical Therapist. I will soon be going to a pain management Dr. & I need to find a Pshycologist (again) but this time to deal with depression due to a chronic disease (not depression due to BiPolar & Hypochondria)
I also am going to either the Mayo Clinic or Cleveland Clinic after the holidays. My Dr.s all believe that it is an excellent idea (I was afraid they would be offended by it, but no, they are SO Supportive)

I have applied for Social Security Disability my claim starts as of April 30th, 2005. And I also have handicap tags for my truck (OH so very nice not to be completely winded by the time I get to the door) I am on various medicines... Lyrica, Paxil, Amitriptyline, Migranal, Imitrex, and so many vitamins and minerals, Super B complex, Omega 3 fish oil, vitamin c w/ rose hips, magnesium & vitamin D, maybe something else, and a daily multivitamin.
And I'm in physical therapy, Eric, my pt, specializes in tender touch therapy, he's the greatest!

Anyways... I think I should "zip it" for now, I'm sure anyone who read that got a headache, I'm sorry...

Take Care! ~S.

Old 12-04-2008, 02:42 PM   #5
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Re: What symptoms sent you to the Drs & how were you Dx'ed? (Anyone see a neuro)

A nuero diagnosed me and referred to me to great pain mgmt doctor. My pcp and his wife a rheumy, both diagnosed me. he gave me meds. she said no meds. she acted like there was nothing to be done. the intern with her said you don't really have pain, you just think you do. which was so frustrating because i needed pain relief.

I was diagnosed at a hospital. My fibromylagia and chronic myfascial pain hit me like a ton of bricks. It started i think because i kept slamming my hand on my shifter to get it to go into gear to get to work when it was cold out. the palm of my hand would hurt for awhile and then the pain would go away. one day it didn't go away. and on my way to work numbness and tingling travelled up to my face and down to my feet on that side and then on the other side. it was like it was taking over my body. which it did. a pal from work took me to the hospital. I had lupus profile which was negative and an mri of my brain to rule out ms. I was diagnosed right then wiht fibro. I also had swollen painful muscles in my back and neck. which had been bothering me at work. and i was dieting and working out to the extreme. I was 124 lbs. and now i am 220 4 years later. another story. the stiffness in the morning was the 2nd symptom after the hand pain. and we thought it was because we had an old mattress. I also have an old whiplash from my younger days, i don't know how it happened. enough about me.

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