path with a new internist

[burma57]

Please tell me how to begin with my journey. I have a new doctor and want to finally get ONE person in charge. In the past, with my past internist everything was done in a scattered fashion with absolutely no cohesion. I had all sorts of things but not put to any good use.

I received my first set of typical lab tests, starting from scratch with the new doctor. What is the best way to explain to her my whole situation? I have gone through over 20 years of crap with absolutely no help.

My "diagnosis" wasnt' really a diagnosis but took a long time to be "granted." My problem, ultimately started at losing balance and severe weakness. I was seen by a neurologist and had a spinal tap and many other tests and at that point, over 20 years, I was told that 5 orange spots meant one had MS. I had 3! I asked her what that meant and she said "we really don't know!" She may have been right but NOTHING DONE AS FOLLOW UP? My weakness and balance have only gotten worse and all of my other symptoms. My pain in every part of my body is also increasing at a rapid pace and leading me to believe that I could have fibromialiga (sp) and MS.

Please help me approach this properly with my unbiased (?) but rookie with me.

I can't thank you enough for your help in advance as I am stuck but found a doctor that I hope to trust but need to know WHAT TO DO!!! I decided that 20plus years is 20 years that were wasted because of negligence. I am not willing to lose one more day!!

Thanks

[Ricobord]

Hi.  Sorry you have been through so much for so long!

I see you are not far from where I live.  Have any of your doctors mentioned Lyme Disease?  It is here in CA, but most doctors are oblivious to it and don't even think of it. I went through a dozen doctors who were stumped with me. It didn't help that I tested false negative twice. I ended up testing positive at IgeneX, a specialty lab that does more advanced testing.

I finally ended up at an excellent LLMD, a Lyme Literate Medical Doctor where I was diagnosed with Lyme and Bartonella, a common coinfection of Lyme that makes the neuro and gut symptoms worse.  I can help you find one if you'd like. (I drive an hour to see mine. Some people fly in to see him.)

Take a look at the symptom list in this document to see how many you have.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Many people with Lyme have MS-like symptoms and many are also misdiagnosed with Fibromyalgia due to the pain.  I encourage you to look for other stories to see if it seems to fit.  Also, you might want to watch "Under Our Skin," a documentary on Lyme and some of the controversy about it.

I hope you get an answer soon!

[tjlmoo]

Welcome Burma57,
Limbo is not fun and I'm truly sorry you have to go thru all this especially since it's been 20+ yrs.
May the Lord bless you with answers quickly.

I can't offer much advice but I can lift these needs to the Lord and suggest that you prepare a simple time line of all that you have been thru  with symptoms and w/tests, mri's, doctors etc. That will help simplify things for your new doctor.

Go in there with the expectation that you are going to get answers.
I'm also in Limbo but I've not had the long journey that you've been on.
I hope and pray we all get dx'd or answers ASAP!

Stay positive and let us know what comes of appts.

Hugs and prayers,
Tammy:)