Just Got Accepted To Mayo Clinic-!

[Christian_88]

Hi everyone-

I always wanted to be "checked out"--by the prestigious...."Mayo Clinic"-

Been waiting for my neuro to send in...(I had applied and have a "Mayo Clinic"..case number)- the required..."summary letter of referral"--! I gave him the fax #...like 2 months ago--& he's been 'dragging his feet"...! (Guess he's really busy)-

Anyway--called up Mayo last Thursday---a really nice "intake"...young lady saw my folder...& said.."Christian...no letter yet! Let me suggest something to you. Fax us....results of all your studies...(EMG....EEG...MRIs)---& then....send letter to the "neuro dept"....stating your symtoms...etc...."--(In other words...write my own 'summary letter...)---

I asked her...(for expediency sake...)--if I could send my 'summary letter'...by e-mail-!

She gave me her e-mail...& said...she'd forward it---!

People here at AboutBFS---I'm telling you--I wrote a letter from the bottom of my heart--! Told my symptoms...the fears---the issues...the fasics..& especially...the "myoclonus"...was giving me....(my last "issue"...if you read another tpoic...was a "breathing issue)----I also....faxed all my test results---

I was told.....that the "usual"...wait time was...7-10 days....& after ...IF i were accepted.....there was a waiting list of...30-90 days! I applied on Thursday...last week---Imagine my surprise.....when I got a call yesterday...(Monday)---that I was accepted!

Also---I was scheduled to see...the one neuro whose background really "struck" me! I was so happy!

The only thing is......I have to wait til first week of July.....when this Dr---has his first openings--! (I gotta call next week....to get exact appt date)----

Thank God---I got this really ...helpful young lady on the phone! (they have about 25 people---I got her..! God's hand at work! At least that's my belief!)--

Then...another "good fortune"--! Today...I was in Center City....going to a Whole Foods Market to buy some food...(It's right by my hospital...where my neuros are)--Walking down the street...going out to lunch...by himself...is my neuro!

We stopped....chatted...& then...Told him of my "scary"...experience....last nite! (See my other post...where I wrote about getting a strong myoclonus....as I was in bed....before sleep...that actually restricted my breathing....for as few seconds!)

I told my neuro...this! (Talk about a free Dr-Appt )---He reassured me...it was nothing serious!

Then..I told him...I was accepted to Mayo Clinic! He congratulated me...saying...he was just in the process...of composing the letter....& kindly asked me---if there was anything I wanted him to write....about my BFS! (BTW...he KNOWS of the neuro I am going to see---he says he is one of the best in the nation! Well...he IS ...at Mayo)-- So--I told my Dr.....any info HE feels...would help this Dr--to get a better...."idea"...of my ailment---feel free to fax him--! Just the idea of going to Mayo--is very reassuring!

It's been a good week--! TWO "good fortunes"--
1) Getting a really great...helpful.."intake woman"....who advised me on what to do--to help myself....! AND

2) Seeing my neuro-on the street--& asking him a question about something...that concerned me--!

Anywayy--that's it! Anyone here ever been to Mayo Clinic? (In Rochester Minn)---Get back...w some thoughts--Christian

[jro]

Christian,

I am so glad you are going to be getting the top notch analysis you deserve. I remember when I finally found a doctor that I felt was experienced enough to give me that thorough evaluation. Even though it did not lead to a diagnosis, the reassurances of what it was not and the experience of talking to someone who dealt regularly with the symptoms in the ballpark of what I had made a big difference.

jro

[Christian_88]

Thanks jro--

What did this Dr. tell you---that really made you feel better?

I hope you are doing better- Kindest regards--Christian

[jro]

Christian,

I am doing better and thanks for asking. The things he said that made me feel better were that he had never seen someone with ALS who reported sudden onset widespread twitching as the first symptom. My onset was weeks not months so I assume he considered that sudden. Widespread for me was calves, then face, then tongue, then whole body. He also said the slow sensory nerve conduction results I had were not consisent with ALS but with an immune-related neuropathy. He also noted several abnormal immune test results that I had (high ANA titres, high levels of immune complexes, and monoclonal gammopathy). He also prescribed various supplements like B-12 shots, folic acid, iron, and other B vitamins. He seemed willing to be aggressive in doing what might help to improve nerve health. He eventually prescribed levocarnitine when the other supplements were not helping me. I noticed an improvement in my symptoms several months after taking the levocarnitine. I have no idea if there is a cause and effect but I like to think there is. The main thing I liked about this doctor is he is someone who has spent his entire career beginning in the 1950s dealing with people with neuromuscular diseases that are or mimick the symptoms of ALS. When I would google, I would find articles he authored. When I had a question about a test finding, he would speak about his research on the subject. He also spoke about things that worked for his other patients that were more severe than me so it reassured me that I had a place to go if things ever did get worse. He acknowledged that my symptoms were real and that they were unusual. He deals with unusual things and was not dismissive. Instead, he wanted to take a problem-solving, willingness to try things approach within reason. I look forward to hearing about your experience at the Mayo Clinic.