things are better today
It just figures. I can't get in to see a doc when I have these flares and they don't think anything of the minor foot drop that I am left with. The ER docs are the only ones who really see me at my worst. I feel like the car you take to the mechanic because it has a knock. The mechanic checks it out and of course the car doesn't knock for the mechanic. My body just decided to snap out of it and start firing on most of the cylinders...LOL.
My eyes have improved a lot! I am not weak in every muscle of my body. I still have the dragging right leg but that is so common anymore. It truly is sad when my husband is glad to see me walking with my usual drag rather than not walking at all! Even for me I am thankful to be able to fend for myself even with a limp.
So, I am checking into going to Mayo Clinic. Now I would like to have another flare just so I can video tape it and let the docs see me at my worst. I fear that is the only way any of them will see me that way. They are far too busy to see me right away when I am like that. Usually my neuro won't see anyone right away. I have to schedule an appointment four weeks out. Ugh! I just hate docs. I read that Mayo clinic has another test that is similar to MRI but shows abnormalities that aren't caught in MRI. I think it is called MTI. It stated that this test shows things that an MRI doesn't pick up. Like lesions that are too small for the MRI to detect I guess. Hopeful about that test. I felt pretty positive after I read thru the tests and what the doctors do there. Still not so sure though.
I need to first contact my doc and have him give me a referral. That way the insurance is more likely to cover the visit.
Anyway, I made it back to work today and everyone is checking on me. I sounded pretty awful over the phone yesterday. Sad I was so weak that even speaking was difficult. They told me that it sounded like I was struggling just to speak...glad it didn't sound like I was just enjoying a day off! LOLMy fatigue has improved too...amazing. I don't understand how this can just come on so suddenly and then just disappear as quickly as it come on. I guess my shorted out wiring just realigned and started working again.
My eyes have improved a lot! I am not weak in every muscle of my body. I still have the dragging right leg but that is so common anymore. It truly is sad when my husband is glad to see me walking with my usual drag rather than not walking at all! Even for me I am thankful to be able to fend for myself even with a limp.
So, I am checking into going to Mayo Clinic. Now I would like to have another flare just so I can video tape it and let the docs see me at my worst. I fear that is the only way any of them will see me that way. They are far too busy to see me right away when I am like that. Usually my neuro won't see anyone right away. I have to schedule an appointment four weeks out. Ugh! I just hate docs. I read that Mayo clinic has another test that is similar to MRI but shows abnormalities that aren't caught in MRI. I think it is called MTI. It stated that this test shows things that an MRI doesn't pick up. Like lesions that are too small for the MRI to detect I guess. Hopeful about that test. I felt pretty positive after I read thru the tests and what the doctors do there. Still not so sure though.
I need to first contact my doc and have him give me a referral. That way the insurance is more likely to cover the visit.
Anyway, I made it back to work today and everyone is checking on me. I sounded pretty awful over the phone yesterday. Sad I was so weak that even speaking was difficult. They told me that it sounded like I was struggling just to speak...glad it didn't sound like I was just enjoying a day off! LOLMy fatigue has improved too...amazing. I don't understand how this can just come on so suddenly and then just disappear as quickly as it come on. I guess my shorted out wiring just realigned and started working again.
Replies
Sounds like a trip to the Mayo is in order. You really need to get this thing figured out and just maybe they are the people to do it.
Gentle hugs, Linda
Oh Jenni! I am sorry.... you are going through so much, and you are right, isn\'t it \"convenient\" that the docs never see you during a flare, and the mechanics never hear the clanking sound when it happens. Good luck at Mayo..... I think that place is awesome. My dad had a kidney transplant at Mayo in Minnesota over a year ago, and boy does that clinic have their act together! I\'ll pray for you, and hang in there!
Amy
I\'m glad you decided to go to the Mayo Clinic. Maybe they can help you. I\'m also glad you are doing better. I hope it continues.