Cleveland Clinic update

[byyygrace]

It has not been a very good week! I traveled more than 1000 miles, missed two days of work, and spent hundreds of dollars for a 20-30 minute appointment! I know nothing more than I did before.

I was told it could be Lupus, HTLV-1, or Inherited Spastic Paraparesis, but that she(the dr) would not do any testing(even the HTLV-1 blood test that Dr. Scrawny wanted) but would be happy to give me a referral to another neuro if I found one online that I'd like to see.

She knew both Neuros. She talked about how meticulous the neuro that diagnosed me was and how some felt Dr. Scrawny rat did not spend enough time with his patients. She too, could not tell from the MRI's that I had lesions! maybe it is something else? I don't know what to think or which way to go next!

Is there anyone on here that has been diagnosed then undiagnosed? If so, what did it end up being?

The good news is that thanks to LuLu, I stopped by Grandpa's Cheese Barn and and bought some amazing fresh dill cheddar, smoked gouda, sea salt chocolate caramels, and Ohio Buckeye candies!

Colin

[byyygrace]

Sorry Poppy! Is gluten ataxia something that can be checked with blood work? I'm trying to make a list of some conditions that could be ruled out or confirmed fairly simply. Do you feel better now?

PastorDan, how are your visits going at the Cleveland Clinic? If you can, stop at Grandpa's next time you pass by-it's worth it! My husband went to the outdoor store next to it. I could hardly get him out of there!

Joiedecour, I thought so too! I am frustrated and just about too tired to fight. I think my husband is going to help me try to sort it all out. I seem to be very easily overwhelmed with the smallest task lately. But on the bright side, the cheese is good, the chocolates are good, I'm enjoying my new Michael Kors handbag from the outlet store that I bought along our route, the new shoes, etc. Lol

maxthecat, I'm sorry that you had to go through that! The Cleveland neuro was just appointed this year and she is very young as well as the first Vandy neuro. I'm thinking that someone with at least a few more years experience rather than text book knowledge would be better. What is your other neurological condition?

[Lulu54]

Colin, I am THRILLED someone finally listened to me about Grandpa's and can back me up on the stories....  I hope you don't have to make that trip again, but if you do be sure to get the Ohio Amish swiss- it is the best I have EVER had.    

PD, you need to turn around at the next exit and backtrack if you miss it on the next trip!

I am sorry that you didn't get answers, but keep in mind you want to get the correct diagnosis and not just anything.  hugs, L

[maxthecat43]

That happened to me.  I was first diagnosed in July 2011, and was passed on to a "specialist" who was just out of school for the MS specialty.  This so called specialist took away my diagnosis, and I stayed like that for a couple of months.  After that, my original neuro was able to send me to another specialist, one of the best in the country.  She confirmed the MS diagnosis.  

It was the same dance with my other neurological condition.  You have to keep looking to find the right doctors.

[Joiedecour]

How horribly frustrating for you. I would have expected you'd get more answers at Cleveland. But at least you got some good cheese.

[PastorDan]

I finally saw Grandpa's sign as I was coming home last night, but by the time my brain connected it with Lu's glowing recommendation, it was too late to try for the exit lane (in the rain after dark).  Maybe next time.

[Poppy7402]

I was initially told it was MS then got the line "we don't think it's MS but we don't know what it is".  We had to figure it out ourselves - gluten ataxia.  Although gluten ataxia in it's severest form manifests itself very like MS, life is so much better with a label.