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Jennifer's Story...

My name is Jennifer and I am 25 years old.

This all started for me in 1995, I was a senior in high school and I had gone to my Primary Care Physician for a yearly check up.

I had my blood tests done and a week later the Nurse Practitioner called me to come in and give another test. She said that my white cells were high.

I went in and gave another sample and still they came back high. She then referred me to an Oncologist Hematologist at Saints Memorial Hospital. She never explained why I was going there other than high white cells. I had no clue what an Oncologist/Hematologist was.

I went for my initial visit only to find out what type of Dr. he was and for him to explain to me that they suspect that I may have Leukemia. He explained that he would have to do a bone marrow biopsy to rule it out. He was going to schedule me to come back in another time but my mother was with me and insisted that he do it during this visit. He said o.k.

We waited a few hours for him to finish seeing patients and he did the biopsy. It was not as painful as I thought it would be but it was very uncomfortable and certain parts were more painful than others.

The test came back with no Leukemia but he wanted to send me for a second opinion at the Dana Farber, I agreed.

The Dr. at Dana Farber told me that he would have to do another bone marrow biopsy.

My results came back and the Dr.'s both concurred with each other and there was no Leukemia right now and that they would just monitor my high white cell count.
Meanwhile I just kept thinking what if and when the result come back positive? What am I going to do. I had lots of family support, Thank GOD.

I was monitored by this Oncologist for a long time but in the meantime I would not stop going to others to find an answer.

I had gone to New England Medical Center and spoke to a Bone Marrow Specialist there and he said that he did not think that I had Leukemia because it just doesn't take it's time and sneak up when it feels like it and he said that other tests would be elevate also not just my white blood count. This Dr. did say the word Cushing's and then said "no, you don't fir the profile) Let me explain I am 5'7 and have always been heavy, I mean I carried my weight well though. I have always been about 230 it was all in my hips and legs there was never a belly like I have now.

I would go back to the original endocrinologist and explain to him that I have headaches and that I bruise easy, I even told him that I was gaining weight mostly in the front. My jeans were fitting very strangely. They would go over my but and hips but it was hard to button and zipper them. Then my bra starting feeling tighter and tighter I was expanding very fast.

By this time I had started dating a great guy. On our second date I had started to get a headache and I had to leave early.

I had met him on the internet and had spoken to him for a month or so before actually going out with him.

I went home that night and for the next two days I had a bad migraine, I was very nauseous and I couldn't keep anything down, I also had cold sweats.

My aunt took me to the hospital and they took me right in thinking that because of my fever and symptoms they suspected spinal meningitis. A Dr. ordered a CAT Scan and a spinal tap. Oh boy the spinal tap was fun, That's another story.

I spent 4 days in the hospital taking medicine that they give to people who have Glaucoma because the CAT Scan showed that the lining in my head was inflamed and they suspected that for the headaches. They finally got an MRI appointment when the trailer was scheduled to come by (two hospitals shared it) The MRI came back o.k. my headaches were gone. My fever had broke a few days prior while I was sleeping. I know because I had woken up feeling like I was in a pool of water and the nurse had to come in because I got scared and didn't know what was going on. I'm 23 when this all took place.

Now comes the day for me to be discharged I got out of bed and had a hard time walking to the bathroom. I just figured it was from being in bed and barely getting up.

My Primary Care Physician came in, and with my mom and a nurse there said to me in a very cold and bad attitude ("Well Jenn the tests came back negative in the MRI I am diagnosing you with Pseudo Tumor Cerebri (which means false tumor of the head) this is something that overweight woman get so lose 100lbs.")

I was so embarrassed, I was a very active girl, even though I was heavy I had walked 3 miles a day and ate right.

I had called him a week after I got home and asked him if it was normal for me to still be having trouble going upstairs and walking. He said everything will be fine, he treated me like i was a problem patient.

I switched my Primary Care right after that. I was now seeing another Dr. Symptoms of depression were coming very quickly and strongly. I would cry over everything.

By this time I was 24 years old, that guy Greg, well he stuck through with me and we got engaged in 2001. We bought a condo together. I had everything I ever wanted in life, why was I so unhappy and sad. I know it wasn't him he treats me like gold. It was me.

I went to my Primary care and told him I was so unhappy and had not idea why, I was being mean to Greg for no reason at all 95% of the time. I was gaining weight fast, I had gained over 100lbs in 1 year and all people would say is your getting too comfortable with Greg and you are letting yourself go. I was growing further and further apart from friends and the one person I had near me (Greg) I wasn't treating very nicely.

The Dr. said I'll help you. He gave me Paxil, didn't work I was gaining weight and I had read that antidepressants could do that to you. Then we tried Celexa, nope didn't work either. I tried exercising to make myself look and feel better. My back would hurt so much right above my butt that I would get this paralyzing feeling like someone was pinching a nerve. Then my legs would get really sore and I was only walking in place with a Leslie tape.

My Dr. said well the pain will go away if you just keep walking he said "It's like with me, everything is sore when I haven't played gold all winter and then go back to playing". I felt like pushing him off of his chair right then!

Now I am having trouble doing what I am best at, shopping! I can't find anything to fit me because I have this huge growth of a belly in front of me (I named her Bertha) I have to get pedicures and put a bright colored nail polish on to remember that there are toes down there if I look hard enough.

This was it, I just said o.k. we'll switch Dr.'s again what the hell if anything they will just say the same thing. The Dr. looked at me and asked me about my health history and I asked her how long she had? She laughed and we talked for a good hour, at the end I begged her for diet pills. She looked me in the eye and said I am going to something even better than that for you. She gave me a referral to an endocrinologist.:)

He was local and when he did his tests and they all came back elevated he referred me to Mass General and said that they would know how to handle this disease for me, they have specialists.

I had never been so happy. Finally someone who didn't call me a hypochondriac, someone listened and paid attention to what I said. All of these years they blamed everything on my weight as a way to shut me up.

Now I see Dr. Thomas at Mass General. I have gone through 2 24 hour urines (twice, the lab screwed up) I did the Dexamethasone suppression test and a few others. Last month I went in for the Nasal Petrosal test. Any questions on that one just ask me......That was one of the weirdest tests I have been through.

Now on April 1 I am meeting with a Neurosurgeon to discuss Pituitary Surgery.
As for the symptoms well I still get headaches, I find it very hard to concentrate on things and to stay focused, I have a hard time going up stairs, I have high blood pressure and I'm on medication for that. My back hurts me a lot even when I try to do the simplest thing like food shopping.

I went Sunday and Greg likes Chocolate Chip Cookies so I swing down that isle for him (I don't like sweets, I would prefer to have carbohydrates for some reason), wouldn't you know my back starts getting sore and I have to stop because I can't move right in front of the Oreo shelf. Oh boy all I could do was just wait until my back felt better.

My Primary care also has me on a new antidepressant that seems to help somewhat but I still spazz every now and then about something stupid.

I couldn't have been blessed with a more that with Greg and my mom and Dad. They have been through hell and back with me and still support me with anything I do. I turned 25 on March 16. I was supposed to get married on May 3, 2003. I hope I will still be able to.

If anyone would like to e-mail me I would love you to.

I hope that if this could help even one person.
Please remember to never give up, be persistent and always believe in yourself. Always listen to your body no one knows it better than you.

There is light at the end of the long tunnel that this disease brings.

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