Update on road to diagnosis

[renschwa]

Hello there...

So my journey has begun. Today I had my first blood test that was ordered by my neuro. Tomorrow morning I have an appt with a LLMD, Physician Assistant who tests thru Igenex. Anxious to hear her opinion. On thursday I will be having my brain mri done with and w/o dye. Not looking forward to it but I'm taking the drugs this time to help me out. On friday I'll be seeing my new internal med primary doctor at UPenn. On monday I go to the neuro and then I'll have any tests that my primary orders. I already plan to get a 2nd opinion from another neuro/LLMD that I just found as well unless something pretty definite shows up on the MRI/Blood work.

Any suggestions/advice you all have would be appreciated. I already plan to ask for copies of all test results thanks to the reading I've done on this board. Wish me luck!

Renee

[renschwa]

Thanks Jackie. Well, I'm already skeptical of my neuro's knowlede of Lyme and MS. He told me that symptoms do not travel like mine have been doing with either MS or Lyme, but why don;t we do bllod work and MRI to put your mind at ease! That's why I already have other opinions lines up!

[JackieCalifornia]

Wow, you move fast!  Good for you.

Just a note to watch out for MDs who claim to be broadminded about Lyme but who follow the narrow CDC guidelines for testing and diagnosis.  All responsible MDs hold themselves to a high standard, the problem being that the CDC is using what some MDs believe is an outdated standard, in view of recent years' advances in diagnosis and treatment.  (I personally have a lifelong friend who is an excellent MD, and he thinks the whole progressive ILADS approach to Lyme+ is absolutely nuts.  He means well, but he's been suckered by the CDC and the guys who have staked their careers on the now-outdated approach to Lyme.)

And ... neurologists can sometimes be part of the denier group who cling tightly to the CDC approach.  Neurologists and rheumatologists were the first two specialities to encounter Lyme in practice, and their initial impressions of what Lyme is and is not, and what symptoms are Lyme-related, have not moved much in the years since.  This is not to condemn all neurologists, but to flag a warning for you.

I saw a neurologist early in my illness with Lyme and babesia, and he thought I was a joke.  He had a waiting room full of folks with canes and walkers, and I just happened to be having a good day when I was there...and I am unreasonably cheerful when in an MD's office, figuring they see cranky people all day, so why not be pleasant.  After a brief conversation and even briefer exam, Dr Neurologist showed me the door and leaned out as I was leaving, to yell down the hall to his receptionist "NO FOLLOW UP FOR THIS ONE."  It was a while before I found the right MD.

You are making great strides in getting appointments and evaluations, but don't be crushed if it doesn't all fall into place quickly.  I was certain I would be well in mere weeks, and well, it takes a while longer than that, but it's still where we here are all headed -- and I am so much better now.  

Let us know how it goes!  We'll be waiting to hear.