Temporary Aphasia and Other Nasty Symptoms

Posted: February 1, 2010 in 1
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My family doctor (primary care physician) has asked that I prepare the letter that will go to specialists prior to my first arrival. It needs to elucidate in few words what to do to make my visit safe. It must also explain MCS (Multiple Chemical Sensitivity) to a physician who may have had no education about or exposure to a patient with the kind of symptoms I experience. My symptoms can be mild (for me) which may include coughing, asthma, brain fog and increased ataxia (you see I already I have ataxia – the hereditary kind). Or, they can be medium, slurred speech, severe ataxia, altered blood pressure, complete inability to focus or answer questions, stuttering, poor word-finding skills and dizziness. And of course, the biggie…anaphylaxis…and it happens too often.

So, my desire with this post is to engage the assistance of others with MCS. What should be included in a letter to a physician that arrives before WE do? First appointment of the day? No waiting? This is a brainstorm – so all ideas are accepted. I will choose the ones I want for my letter and post it. Maybe it will be useful for others, too!!

  1. Mary says:

    HI, I read this with great interest as I see yet another specialist (office is in the hospital) next week and am looking at, at least, day surgery, I have had some of my absolutely worst reactions in medical offices/hospitals and scares the beegeebers out of me. Do you by chance have this letter ready to post yet or can you refer me to any sites where I can get some info I can take with me. Thanks!

  2. nancy olson says:

    greetings ! As a nurse & 20 yr sufferer of CMS i have tried to alert MDs with letters & signs. I can tell u they just don’t have time to read them & more often than not don’t even see them because their gate keepers ( staff, MAs nurses etc. ) dont give a letter to them. They nmay get it when they are coming into a room. The best thing to do is call the office several times starting week or two b/4 your visit. Ask to talk to the manager of the office, explain that u need scentfree. I am now anaphlatic reacting to Pureal and other handsanitizers so i wear a mask at all times. Few days ago i had a anaphlatic while wearing a mask at my local Cub, 3rd time i had a reaction at the door where they have a cleaning station by the carts. I cant go there anymore. The manageer tried to give me the epi-pen and poked himself ! I sent a thaank u card to him.
    Ok i wandered of…….back to problem…..
    Call the office, tell them your situation, more than one time. I have a sign i post on the door of the room im in but i have had hospital staff, MDs walk in without reading it.
    My dentist knew i was coming in and staff was scent free that was working but i had a reaction due to someone spraying ” air freshner ” in the bathroom a floor away. I didn’t smell anything. I was walking down a hallway & the next thing i remember is staff calling my name and getting a epi-pen jab in my leg. They figured out that i walked by a room that a staff was in who had used the BR after it had BEEN SPRAYED.
    The day program that i went to had some ” fragrance free ” hand cleaner, i had a reaction to it. The list of ingredients on the back had fragrance, so it had a masking fragrance in it. Being sold as FF. They got it at the dollar store. They couldnt understand that i had the reaction to it, wouldnt quit using it, so i quit going there. This was a day program for disabled persons. They got $100.00 a day from the state for me to go there !!
    Ill be looking for a better mask at 3m today, hope medicare will pay for it… good luck nancy

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