Jan 102015
 

I Feel much better than the Neuro says I am

I had an MRI at the last visit and Eriksgirl noted that it was different, my hands bent differently, etc. My neurologist said he could not comment without a MRI to see if therre were changes in the brain causing the change so off I went. When I asked all he could say about that is your MS is progressing. think that was his way of saying I do not have a clue and blame something I have been diagnosed with. The safe non-answer. 🙁

Now we get to the glass-half-empty Neuro vs. glass-half-full (me/Eriksgirl). He was very displeased with there being new lesions in the brain. I was pleased there was not an aneurysm from my kids! 😉 We then proceeded to discuss drugs for a while, he heavily prefers the injections. He then said than I need to get on a drug before a lesion puts me in a wheelchair. Later Eriksgirl said she was thinking he pulled a violation for jumping straight to wheelchair rather than a reasonable progressing disability. That seems fair to me and especially true based on past visits.

We also had a talk about Lyme, which he mostly dismissed. I have tested positive for Lyme so I at least had it at one time. He said he could be wrong and was willing to refer to someone else to look at other causes of my lesions. The person who he was going to refer me to was of course a specialist in MS. Pursuing that seemed a lot like going to a Ford dealership to have them discuss all the makes and models out that could best fit your needs, and then you are little surprised when the best one is a Ford. I had to decline that offer as I had in the past.

I left without picking a drug, big surprise, and I told him I would get back with him.

  2 Responses to “I Feel much better than the Neuro says I am”

  1. Hey, have you ever had your IgG, IgA and IgM levels checked?

    I just say that because I get rashes on my back that look exactly like yours when I am given levofloxacin. I have persistent Lyme and also an immune deficiency. Immune deficiencies make it really hard to fight off infections. This deficiency might not show up in your standard bloodwork because your IgGs are such a small part of your overall globulin levels. You can have your IgG levels at 20% of what they should be and your globulin levels in your basic blood work look normal, so doctors won’t look at it.

    It took them almost two years for someone to think to check those immune levels in me and until then they kept telling me I can’t have lyme, I must have MS or ALS instead. I’m just saying it’s an easy test to check if you haven’t had it checked yet. You could also be unlucky enough to get both MS and Lyme. Just saying.

  2. Hi,
    I have read your entire blog over the last couple of days and have really enjoyed it. When you were first diagnosed, did you have the lesions in your brain or were they limited to your spine at that time? I know that may be a really dumb question. Also, you didn’t talk a lot about balance issues before our diagnosis. Did you fall and trip over things? Were you getting really dizzy, headaches, and feel foggy? One last question that I need to know. When you lost hearing in your ear? Did you get your hearing back? If so, how? Did it feel like a sensation of having a lot of fluid in your ear almost? I am SO sorry for all the questions!!
    Thanks so much for your time!
    Joni

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