Wednesday, November 12, 2008

Dear Diary

I really hate when people tell me what my disease is doing when I live in this rotten body and know how it feels -- I didn't get my information from a textbook to tell me how I feel. I listen to my body, I can feel the pain and new problems, I can even recognize that "feeling" I get when I am attack-y. It really irritates me when people tell me that what I am feeling could not possibly be an attack because ______. When my neurologist told me that because I'm on Tysabri I couldn't possibly be having an attack, I told her, in no uncertain terms, that my fellow MSer friends on the web, who are also on Tysabri, are going through attacks of their own. I didn't think her eyebrows could get much higher, but they did. They joined her hair line for a few seconds before she could back peddle and tell me that it is possible to have attacks on Tysabri. I gave her all the information I could about how my body is feeling, I even told her the most pertinent piece of information: I've had to switch from crunchy to smooth peanut butter. But that failed to impress her, not realizing that I am a die hard crunchy peanut butter girl. They drew my blood again (to see if I had developed antibodies to Tysabri), they made me pee in a little cup again, and they checked all my body parts (and some I didn't even know I had) to make sure I didn't have an infection somewhere unbeknownst to me. They have a new director of the MS clinic I go to, so she came in to give me some unwanted and unneeded information. She told me that they couldn't possibly give me Percocet or Vicodin for the pain. I never take that kind of stuff and thought she must be talking to someone behind me; I even turned around to see who she was talking to only to find out she knew nothing about me because I try to take the least amount of medicine and never want addiction-risking drugs. If she had even glanced at my file she would have known that. My neurologist knows that I won't take too many pills or take any thing that might make me more tired or risk getting dependent on. But not the new god of the MS clinic. She sailed in, made me repeat all the things my neurologist just had me do, then sat down to tell me what my MS is and is not. When she went on and on about what I am feeling, I closed my ears. I know what I am feeling. I don't need someone to try and talk me out of it or minimize the pain and new symptoms I'm having -- go back to your textbooks, Cat Box Breath Doctor Of Redundancy, and dig a little deeper. I may not be a doctor but I know my body. It made me miss my old neurologist that moved to Florida a year ago. He respected my knowledge of my own body and knew that we are the experts of our bodies and know what is wrong and what has changed. He never tried to tell me what I am feeling. I wanted to tell her majesty that she didn't need a push up bra because it only made her look like an overloaded ship plowing through the waters and when your cleavage starts half a millimeter below your neck, maybe you should use a little less padding in your brassiere. Or wear a shirt that isn't so low cut the lacy edges of your bra show over it. And you don't need 5 rings on every finger. It doesn't make you look classy or rich, just tacky. She had obviously never heard the "less is more" rule of thumb about cleavage or jewelry. Everybody was awed by her and bowed to her knowledge of MS, I even saw my neurologist nodding along with the things she was saying -- expect the pain meds part, she knows me better than that. I wanted to like her and find that she could give me new information that would help me, but when she tried to tell me what I'm feeling that all went away and I decided I couldn't possibly like her. But I may still give her some mouthwash and a toothbrush for Christmas. I'm nice like that.


Jen said...


I was having an acute attack a few years ago (coinciding with the loss of my job and complete mental meltdown.) I was in a clinical trial at a respectable hospital, with a medical coordinator who was supposedly the best in this area. I was freaking out because I was having trouble swallowing. This neuro told me straight to my face that that was not possible, and only those with further advanced MS would have such a problem. He told me to take more Neurontin (although what I was already taking was zonking me.) Then and there I switched to another neuro (recommended by one of my MS buddies) and he set me straight, telling me it was where my lesions were located, not how long I had had the disease. And I was in fact having a new attack, which he aggressively treated.

So if you have that "attacky" feeling, trust yourself and maybe get another opinion.

Denver Refashionista said...

So sorry about that. Sounds like the last thing you needed.


Simply aaargh!!

Elaine said...

First of all, let me say that you are a fabulous writer.

I completely empathize with you as I too have MS and I have been the rounds with the MS Society and the neurologists trying to get them to listen to sound science instead of continuing to blindly propogate the myths that have been shoved at them. I started researching MS in 1993 to find answers for myself as the MS Society and doctors weren't offering anything that had any kind of beneficial effect. Yes the drugs they offered had effect but they all feel in the adverse effects category.

I developed a treatment that I named Prokarin and I have been using it for 11 years (12 years in Feb 09). The Prokarin has alleviated all of my symptoms of MS and I have remained symptom free for 11 years. If I don't take the Prokarin my symptoms come back but within 20 minutes of putting the Prokarin patch back on all of my symptoms go away.

The Prokarin patch does have one side effect though, if you don't get the patch sealed tight from air, it can cause a severe itch and irritation under the patch. Recently one pharmacy has developed a Prokarin disc that is smaller than a dime that you simply peel off a piece of paper and stick it on your skin and wear it from morning until bedtime. The Prokarin disc doesn't cause any skin irritation. The pharmacy that makes the Prokarin disc will give you the first month free so you can see if it will work for you. The pharmacy is Custom Prescription Shoppe and their phone number is 1-866-751-7004.

The best indicator as to whether Prokarin will benefit you is if you are heat sensitive. This of course is the most classical symptom that defines MS from other similar neurological conditions. The more heat sensitive a person is, the better they respond to Prokarin.

If you would like more information on Prokarin and my research. Please visit my website at or call me toll free at 1-866-222-3367