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Date Posted: 17:07:57 05/26/00 Fri
Author: Melodie
Subject: re: Letters of introduction
In reply to: Limboland 's message, "Letters of introduction" on 17:01:48 05/26/00 Fri

BEFORE I KNEW ANYTHING ABOUT MS:
When I was 9, I started getting headaches. In the ninth grade, (about 14 or yrs old) I started having abdominal cramps along with alternating bouts of diarrhea and constipation and was diagnosed with Irritable Bowel Syndrome about two yrs later. Around this period of time, I also had a chronic cough (NO smoking), slight urinary incontinence, hoarseness, and intermittent low-grade fever.

Then I get sick during finals week at college (about 2 1/2 yrs ago); I assume its the flu. I've got all the symptoms, muscle aches, fever, chills, fatigue, weakness and dizziness. One week, then two passes; painful burning of eyes and dye eyes& mouth get added to the list as well as syncopy (fainting), and a vertigo that feels like I'm in an earthquake. My vision gets blurry and a little double vision surfaces.

Okay, by now I KNOW I don't have the Flu! I'm now thinking maybe I've got Mono , it's a common college ailment, esp if you live in a dorm, and my glands were aching. I go the my GP who sends me home with antibiotics. I don't get better; he does bloodwork (I'm thinking do I have Cancer?) A couple of tests were borderline positive for Mono, Samonella, Proteus (I have NO idea what this is!). He runs the test for Lymes disease, toxoplasmosis, turemia, TB = normal.

He refers me to an Infectious Disease doc; she feels that I have MS (I thought she meant Scoliosis; I did not know what MS was!). From here is my neuro visit, he runs evoked potentials, nerve conduction studies, and an MRI, but doesn't find a thing. I go to a Rheumatologist; he tests me for Sjogrens, Lupus, and Fibromyalgia. He does not feel that I have any of these but has mercifully treated me with some meds so I can sleep and get through the day. He sends me to a new Neuro and a Cardiologist (I have always average about 120 beats per minute normally). The neuro dismisses me and treats me with an I'll humor you attitude when I suggest a spinal tap. She spends a top amount of 3 minutes examing me and my MRI. SHE RUNS THE WRONG TEST AND FORGETS THE ONE SPECIFIC TO MS THAT I SPECIFICALLY REQUESTED!! The cardiologist says I have a midsistolic click and trace regurgitation.

We aren't sure what to do now, so we do nothing but visit the Rheumatologist peroically. In Nov of '98, we go to an MS specialist; he takes four hours talking with me, assessing me, and going over test results. TO MY MOTHER AND MY SHOCK, HE FINDS A LESION ON MY MRI THAT A COUPLE OF RADIOLOGISTS, AND 2 NEUROS MANAGED TO MISS! Then at the end of my visit, he tells that I may have MS, Conversion disorder, Somatization disoder, mood disorder (like I'm supposed to be all happy after being sick with no answers for so long!) He basically called me a nut case!! In his report he said I was passive when he walked in; I was SCARED TO DEATH!! I'D BEEN THROUGH SO MUCH AND KNEW THAT THIS MAN MIGHT BE THE ONLY ONE WHO COULD HELP ME.

Now (April '99) I'm beginning to evaluate whether he was right! I decide that I could not have possibly made up a disease that so perfectly mimics MS which I knew nothing about (I thought I had the flu). Feeling lost and confused, we go back to the infectious disease doc. By now numbness, tingling, overwhelming fatigue, tremors, loss of cororidination, being constantly cold, weakness of legs and worsening of symptoms during heat and menstruation have been added to my list. Another MRI showed no change in the lesion (march '99); the infectious disease doc does a spinal tap (which hurts like heck; she did not use enough lidocaine. I felt the whole thing!) It shows an abnormal protein band.

To date, I've added pins and needles sensation, trouble swallowing and some aspiration (I choke a lot when I eat or drink), shooting pains when I turn my head to the left (the worse side), more symptoms on right side, worsening vision, worse fatigue (have trouble waking-prob due to zanaflex-get sleepy after being up 2 hours, then again after 5 more. I used to be able to stay up for 14 hrs), whole limb/body jerking spasms, losing my balance more (falling to one side), blacking out (preface to fainting, but does not go that far), body parts going numb easily, hearing loss and stuffy feeling and most of my beginning symptoms continue to worsen (muscle spasms, vision, dizziness-almost constant-, migraines, speech problems-saying one thing meaning another, incontinence, etc).

THAT IS WHERE WE LEFT OFF. WE STILL CONTINUE TO VISIT THE RHEUMATOLOGIST AND OCCASIONAL MY GP, BUT I HAVE NOT VENTURED INTO ANOTHER NEUROS OFFICE B/C WE ARE AFRAID OF WASTING MONEY AND FINDING OUT NOTHING. I WANT TO GO BACK,B UT MY MOTHER IS PAYING FOR IT AND IT IS HER DECISION. ABOUT A MONTH AGO, I BEGGED HER TO TAKE ME BACK AND SHE SAID SHE WOULD PRAY ABOUT IT AND I'VE HEARD NOTHING ELSE. IT IS STARTING TO BUG ME! IF I'M GOING TO GET INTO A NEW DOCS OFFICE BEFORE NEXT SEMESTER, WE NEED TO SCHEDULE IT NOW! MY MOTHER IS SERIOUSLY AND CHRONICALLY ILL TOO, THOUGH. WE KEEP MEDICAL BILLS, SO I TRY TO BE PATIENT.

I'm 22 and did not expect to feel this badly for quite some time! I'm coping with it much better since I found the forum, but it is still depressing. I sincerely dream for a cure; my dream is to be a doctor (which I am working towards in school), but I could not do it in this condition. I love the medical field and want to help people and feel that my experience with this can only serve to strengthen my empathy for patients. I just don't know what I am capable of anymore.I would not even be in school if I did not have to be; it is very hard on me. Some of the teachers just don't understand that some days my eyes are too blurry to study or I have to sleep more, etc. I am glad that I am in school though. I think I would have gone crazy by now w/o the distraction. I just feel like my life is on hold b/c of this and school helps me to know that I am accomplishing something. I would at least like some meds (for MS) so I can feel better though.

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