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Heading To Seattle......

That's right....I am heading back to Seattle and I couldn't be happier about it. After the experience I had in the hospital I can't wait to see my neurologist so that she can explain what is REALLY going on and try and help me. Yesterday we went to the hospital and picked up my medical records and a CD that has a copy of the MRI/MRA, both CT's (the normal one from the 13th and the abnormal one from the 20th), the ultrasound of the corroded artery, and the echo. I am going well prepared.

I sent her an email yesterday and talked a bit about my concerns about what the local neurologist said to me. How I am just so confused now and would really appreciate it if she could go over the tests with me and the comments that the local neurologist made. I have complete faith in my neurologist and trust in her capabilities, but somehow the comments this local neurologist made still upset me. She said things to me like....your MS is not that bad according to your MRI, your lesions are on the left side of your brain so why is your left side weak and numb (at this point I wanted to say...you are the doctor you tell me), your symptoms don't make sense based on your MRI. Things like that. I told her that my neurologist mentioned that the MRI changes all the time and that is in part why people have different symptoms come and go, I also mentioned invisible brain damage and she just said...Oh okay....if you want to believe that and rolled her eyes.

She was not really rude about it, but just had that attitude like whatever lady! The thing about it is that it made me start to question a bit....why is she questioning all of this......she is a neurolosist after all. I know what symptoms I have from day to day and how I am doing. I have to live with it. I can't explain it, I am not a doctor and I am sorry if she is unable to explain it even if she is one. I don't expect that all doctors would have all the answers, they are only human after all and there is a lot that we still don't know about MS. What I would expect is to be treated in a compassionate way, with some understanding, and honesty. If you don't know just say so. Have an open mind. If you don't believe in that just tell me you personally don't believe in that type of medical science but there are some neurologists who do, and more studies are going into it....if there is (as in the example of invisible brain damage). Don't just roll your eyes at me.

Anyway, I will get off my soap box now....that is the thing with this illness though. It can be so hard to have an illness that people just don't understand. That has never been so obvious to me than this past week as I was in the hospital. The doctor I saw when I was in the hospital did not get it. Not AT ALL. It was not just with my MS either. I have other medical conditions that he did not seem to understand. I get that I am a complicated patient. I really do! But, come on people....did he get his degree from a cracker jack box?

After I picked up my records yesterday I went through them and get this.....he had orders in there for me to be on insulin. WHY? He had listed under my diagnosis as Type II Diabetic. WHY? I am not. I never have been. I am not sure why he would think that I was. It makes the first little while I was in the hospital make more sense however. The nurse came in and mentioned they were bringing me in paperwork to fill out and then they would bring in my insulin and I said, wait I am not on insulin, I am not a diabetic. My mom said I think you have the wrong person, maybe it is the person next door (it was a shared room). So she leaves and the CNA comes in and says they want to check my blood sugar. I was like okay. So my blood sugar is 67. I tend to have low blood sugar...this is due to the type of liver disease I have and how it effects my pancreas. She says good thing they didn't give you that insulin as she walks out. So, when I leave the hospital the doctor orders me on a diabetic diet. Hello, I am not a diabetic! My blood sugars were low the whole time because they had me on one and they kept asking me why my blood sugars were so low. Gee, I wonder!

What I have is a condition called NASH. I take Metformin and Vitamin E for it (Metformin is also used to treat people with diabetes....if he would have read my chart he would have seen I am NOT diabetic and this is why I am on that). I tried to explain this to the doctor and he would not listen to me. What happens is the liver is damaged and becomes enlarged. I carry a gene that makes me more likely to develop liver cancer in the future (fortunately I have recently been tested and no cancer currently...rare condition), and a I carry a hepatitis gene (although I don't have hepatitis....it is a genetic thing). Anyway, it has a high likeliness of turning into cirrhosis and they are not sure what causes it....in my case they believe it was a side effect of a hormone variant chemo drug used to treat my cancer I had 5 years ago. I don't quite understand the relationship it has with the pancreas (my endocrinologist explained it to me once....but I can't really remember it well enough to explain it to you) but at times I can have low blood sugars. This is also why I eat a pretty specified diet. Like everyone I cheat from time to time, but I try to eat a certain way because I don't want to cause any further damage. The liver can heal itself...but there is no cure for NASH, they don't know enough about it, and I don't want to do anything to make it become cirrhosis if I can prevent or at least prolong it. This is why I am not allowed to take anything with Tylenol, yet this doctor did not want to listen to me and tried to give me Loratab. I am at high risk of not only making the NASH worse, but I carry two different liver disorder genes. What was he thinking?

I am in remission at this point for Indolent Non-Hogdkins Lymphoma. Basically this is a very slow growing form of lymphoma. There is no cure for it. It runs through the blood stream and when a damaged cell finds a place to attach itself then it will start to grow.....very slowly and form a lump. The lump that I had removed was in my neck. It can show up in any part of the body....from the bone marrow to the bones to any organ to the lymphatic system. Once a damaged cell attaches itself it can take anywhere from 6 months to 5 years or longer for you to realize there is something there. The best way to find the abnormality is through CT/MRI. Fortunately my last CT was clean. The only thing I have is an odd shaped lymphnode in my neck that seems small. They are watching it through CT's done in 6 month intervals because it is in a location that they are unable to biopsy due to the amount of veins and nerves in the neck. It would be too risky. At this point they don't feel it is large enough to be too big of a problem and if it is cancer it has not spread.

I have GERD which is not all that uncommon. He did seem to know what this was and just wanted to argue with me about it. I told him I was not supposed to have Ibuprofen because of it (this is what my GI doc told me) and his response was that is was all GI doctors will tell you but it is not really that bad for you. Excuse me, are you a GI Specialist? I don't think so! Anyway, then he goes on to say do you have a current bleeding ulcer....well, no. Good you can have it. I told him....my GI doctor has told me under NO CIRCUMSTANCES am I to have Ibuprofen. I just had a colonoscopy and endoscopy in September. I was told once again at that time that I was to make sure not to take anything over the counter....especially any NSAIDS. I have had esophageal and rectal bleeding in the past (TMI...sorry) and a hiatal hernia. He just sat there and tried to argue with me. Once again, he did not understand the condition.....or my condition. I understand your typical GERD patient can probably get away with taking an over the counter from time to time, but when you combine it with everything else going on with me...that is a big NO NO.

Not to mention that I also have severe allergies and asthma. I had basal cell carcinoma as a child, cervical cancer, ovarian cancer, severe endometriosis, oh and that gallbladder that just stopped working one day (there are not many organs left for them to take out of me, lol). I have not been blessed with the best health....but I have had a lot of blessings. Sorry for getting way off the beaten path here. Hopefully my trip to Seattle will help to not only make me feel better (damn headache) but I will also be able to better understand what is really going on. I hope all of you are doing well.

Take care of yourselves.
Jaime

By the way....my choice of music reflects my experience at the hospital. Of course I don't feel this way about any of you. You all have been a wonderful support and I am grateful for each of you!

6 comments:

personallog! said...

Awww babe.
My wishes ok good health not working then?

Love ya babe
Dave

Linda D said...

Be VERY careful coming over that mountain pass and into Seattle...the roads are extremely treacherous here with compact ice and snow! It's not been pretty at all and temps are below freezing...what global warming?Q?Q?

Linda D. Snowed In Seattle

Jaime said...

Dave,
My health problems span over several years. Thanks for the well-wishes! I hope you are doing good. Take care.
Jaime

Jaime said...

Thanks for the warning Linda. My dad and I have been watching the pass report all day and so far so good. The pass looks clear and although very cold it is supposed to remain clear for tomorrow. To be on the safe side we are leaving very early. My appointment is not until 1:20, but we would rather be safe than sorry. I don't want to miss it!

I can't imagine trying to drive up and down all those hills with ice though. That must be very dangerous. You be careful too! Hopefully you don't have to go downtown much?! My doctor's is right downtown at Swedish. It is also right off the freeway so I am sure it won't be too bad.

I hope you are feeling better. Please take care. You have been in my thoughts and prayers.
Jaime

mdmhvonpa said...

You have to get away from this fraud of a doctor. I read this last night and I'm still fuming. There is no excuse for incompetence when other peoples lives are on the line. Sorry, but you need to leave this heel behind and find someone who is not trying to suppress you!

Jaime said...

Mdmhvonpa,
That is the unfortunate part of being an inpatient in the hospital...you don't get to choose your doctor. I won't be returning to that facility! Fortunately I do get to choose my neurologist and she the best. I am sure she will be able to figure out something to clean up the mess this idiot doctor made.
Take care,
Jaime


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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