Tuesday, February 28, 2012

Neurology, Neurology, Neurology, what would I do without you?

I went to a new neurologist today, Dr. Susan Evans at Noran Clinic in Minneapolis. I liked her a lot. She listened and seemed to actually care, which is key to finding in a doctor regardless of what illness you're being treated for. We are going to start Topamax, which will be a daily medication. I'm to follow up in 6 weeks. I'm hoping this will kill these damn migraines/headaches.

Since 2/21/12 I haven't had a day without a headache/migraine (whatever you want to call them, which I'm thinking a really nasty name right now). It was so severe Saturday evening I almost went back to the ER because the numbness/tingling started again in the left side of my face. Dr. Evans said that due to my Behcet's disease I am at risk for developing multiple headache disorders, or something along those lines. I was a bit out of it due to headaches and feeling like poo poo due to a flare up. And yes, I had a ride to my appointment today for all those wondering how I got down there if I was this bad off and I'm sure there are some of you out there.

At my visit, I had a hard time walking a straight line with my feet back to back due to severe knee pain and weakness. I'd describe it like your knees being hit by a baseball bat about 20 times. Almost impossible to walk. I was shuffeling today like the old ladies would do. No offense to old ladies;) I also had to tell her about my concentration and memory problems, which was very difficult, which I will get into at another time. I'm am still having a hard time talking about this.

I will see a nurse practioner next time because apparently they want you to switch from doctors to NP's every other appointment, which is more than ok to me. During check out I was told this and I said to the receptionist I need to see someone who specializes in Behcet's. Her reply "What?" Behcet's, I then spelled it for her. She said "I thought you were being seen for migraines". I said yes, but they are due to Behcet's. What I wouldn't give for them to be from something else. Wishful thinking, right? She then had to go and ask the providers there who deals with this disease. She came back with a shocking look on her face saying "Dr. Todd says it's a very rare disease and he's only had one patient with it. There is a nurse practitioner who has heard of it but doesn't know about it but is willing to learn." I said I would be more than happy to see her then. When you have Behcet's, you quickly learn that you know more than most doctors and nurses do about it. Don't believe me? Get it and see what happens:) The other thing you quickly learn is you need to be willing to see someone that is willing to learn and work with you because there is so much about this disease we do not know. Treatment varies widely from person to person.

I left the clinic with a wonderful feeling that someday I just might be able to get rid of these horrible headaches.

On a different note, I have seen Dr. Truitt at Allina Cambridge before and I do think she is a wonderful provider but she doesn't specialize is Behcet's. I just want to make note of that for those of you wondering why I'm seeing a second neurologist. Wait until I post my stories about my first two rheumatologists. You're in for a shock. (Nothing like a cliffhanger to end the day)

4 comments:

  1. Great idea with the site. There is not that much info out there and it is good to hear different stories. I bought a book about people living with the disease and it game me a lot of insight.

    careful with those headaches. Us BD folk are especially prone to DVT... something I am sure your neuro has discussed with you but my neuro the quote unquote Behcet's pro did not contemplate it and it wasn't until months of pain later that the ICU decided to run a MRV and not an MRI.
    cheers!
    Carolina

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  2. yes, thank you. I had all those lovely tests done in August:) I thought I was having a stroke especially since I have not had numbness/tingling with migraines before. Thankfully they were negative. We are in a difficult place because do we run to the doctor and have these tests done every time these symptoms happen or do we assume they are from the migraines? I am a nurse and for me I think I tend to be more stubborn than most would be about going to the doctor. I had so many symptoms that I chose to ignore when I got sick that many would've went to the doctor right away. Eventually I will post my full story but as I'm sure you know, BD stories are usually long:)

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  3. Great blog. Thanks for being willing to share and help spread awareness of Behcets. I've had it since I was a kid but was not diagnosed with it until 8 years ago when I was 21. I have had a headache since I was 17, literally wake up with one and go to bed with one every single day. I have been in an extra bad spell since November and am having a bit harder time emotionally and mentally of dealing with things since last week. I have been going into a neurologist who specializes in auto-immune neurology diseases/issues and she told me that I am stuck with the headache as is, just that we can continue to mess around with medicines to try to make the flare-ups not quite as severe. Just a bit discouraging :) I wanted to give you a heads up about the topomax (I'm sure you are aware of this being a nurse) but there can be some pretty severe cognitive side effects. I was on it for almost 2 years and got to the point where I couldn't remember words or names of co-workers. Keep an eye out for anything different or slower about your thought process. I have right sided numbness and weakness with my headaches and it is getting scary because I'm at the point where it is hard for me to even write now. Fun times! I shared your blog on my facebook-hope you don't mind. Good luck with the headaches, aren't they miserable?

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    Replies
    1. yes, headaches are the worst, almost worst than the pain at times! what medications have you tried? or is it a laundry list:) share away regarding my blog, I started it for others to understand and do exactly what you're doing:)

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