jessica
Registered: 09/21/09
Posts: 3
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Hello Everyone,
I'm new to this forum. I just wanted to start off by saying that I haven't been diagnosed with cadasil, but my doctor is leaning toward it at this time. It all started in Dec. of 2008 when my husband and I layed down to take a nap and I woke him by having a violent seizure which landed me in the hospital over night. The EEG showed a lesion so I was scheduled to see a neurologist (because the small hospital I was in doesn't have one) and sent home the next day. When I went to my Dr. appt he sent me to have an MRI and he from the get go always seemed real confused about what he was seeing but he would never tell me anything other than what test we were gonna run and that he had it in my charts as white matter disease. Eventually after all the "basic" testing was done, I asked him just exactly what does it look like and he said basiclly it looks like you've had a bunch of little mini-strokes (TIA'S) all over with no known cause. I have had several other things ruled out including: multiple sclerosis, rheumatoid arthritis, lyme disease, and lupus. I said well what now and that is when he suggested we test for cadasil. I have noticed some changes in myself mostly just small things such as I used to be able to spell just about anything people used to asked me to spell for them now i find myself asking them. I do have headaches but I don't know if you would consider them migraines. I'm very forgetful. I was working in the ICU as a nurse before all of this but with the laws against driving and siezures and no public transportation where i live i had to quit. As far as I know there hasn't been anyone in my family diagnosed with this. I'm scared and don't know what to do. I have three young children all boys by the way to worry about too. I've got the orders for the blood test and athena is who my doctor sent them to but without insurance it may take a while to get it paid for. Please let me hear from you all sorry my first post was so long ill make it shorter next time.
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sslmaki
Registered: 09/07/07
Posts: 4
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Jessica, welcome. I would welcome to hear from you privately, I sent you a message. Please contact me....I am a nurse too!
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sslmaki |
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Janet
Registered: 09/16/09
Posts: 3
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I am new at this too, and had many of the same tests before getting the one for Cadasil. To my local neuro's credit, he mentioned Cadasil from the beginning, then we ruled it out because there was no family history. (The E.R. doc said MS after my MRI showed lesions.) Flash forward many months and I was still suffering pressure in my head, headaches, nausea, dizziness, etc. My neuro said I was a mystery and kept saying I should see a specialist in another state. (I am in Wyoming and so far the only one here with a documented case.) I finally did, he ordered the test, and the ONE THING I was most worried about was the only result that cam back positive... I am 50 and learning to cope with my fears for the future. My son is 26 and does not have health ins. so he will not be tested for awhile. |
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