Wednesday, August 19, 2009

Another Doctor Visit

I saw a local doctor today (the slow virus one). He specializes in HIV and Infectious Diseases. I didn't sleep well at all last night so I was in even worse shape cognitively today. The physician's assistant shared with me what they were concerned about. He said they also noticed I have odd movements so they want to rule out Parkinson's. I was kind of blown away at how perceptive they are at recognizing neurological symptoms. The p.a. said he doesn't believe in cfs and feels its a wastebasket diagnosis so they are going to run some tests to rule out all the major neurological diseases like ALS (which is my worst fear), MS, Parkinson's, and two others that I can't remember. Right now my diagnosis is frontal lobe dementia.

While I might not agree with the diagnosis I am glad they are running more tests and ones I've been wanting since getting sick-simple things like B12, folic acid, iron (which has never been tested), and others. They are also referring me for a Brain Spect Scan which doesn't involve being in an enclosed space. And then they will refer me to a Neurologist. I've been wanting to see a neurologist for quite some time.

All in all I'm grateful they are running more tests and I'm glad to have other neurological disorders ruled out. Any information is useful. Because I got diagnosed relatively quickly there are a lot of things that never got tested (like B12, iron, etc) that I think are important to test for in any chronic illness.

I have to figure out how to get some sleep. I'm so grateful for people's feedback from my post yesterday. It has made me realize how exhausted I am. All the events of the past few weeks combined with lack of sleep has been slowly taking its toll.

On Saturday we went to the city's Art and Soul Festival. This is something I would not have been able to do 5 months ago. We stayed for almost two hours. It's a festival featuring various musicians. We went to the Gospel stage. Oh my gosh-that music was powerful. I felt it down in my bones. It was beautiful and rich. People were smiling and dancing. I felt this deep sense of joy at being able to be present at this event. I felt at one with everyone. There is nothing like hearing music live. If you like gospel music, anything by the Hawkins family and choir, or the Oakland Interfaith Gospel is wonderful.

I just completely ran out of steam so I'll stop here.


Renee said...

Hearing you speak of your movements, etc. and neurological symptoms, I am wondering if you LLMD feels your Lyme is completely gone? Could it be active again? There is alot of research out there on symptoms of Parkinson, MS, ASL, etc. being Lyme as it is the "great imitator"....just a thought.....
Hope you are getting the rest you need and some good sleep. Glad you are happy to be having so many tests to support your journey for getting better.
Your festival sounds so fun!
Gentle hugs

Shelli said...

I do wonder sometimes if CFS is code for "we'll figure it out someday." I don't know if it is denial that this is all there is, so live with it, or hope that one day a doctor will go, "Aha! Here's the right diagnosis. Take two of these and be bright and energetic in the morning!" In any case, I am so happy to hear that you are getting some good medical attention. I hope it leads to more pieces of the puzzle being solved.

Anonymous said...

There is something undoubtedly comforting about testing, in a disease/syndrome in which we're so often not treated like real patients with a real medical problem. It's good you're getting good medical attention. Good luck with the tests.

cfswarrior said...

Hi Renee-

Thank you for reminding me! I hadn't thought of lyme reemerging. My cfs doctor who I thought was an LLMD isn't so I'm going to switch to another doctor in the same office who is an LLMD. My cfs doctor thought I should have had significant improvement after 6 months on antibiotics (not true as you know) so he stopped them.

I'm glad to be having more tests too. No one has ever tested me for B12 and Folic Acid deficiency-both of which-when low can cause neurological symptoms.

cfswarrior said...

Hi Shelli-

I think the name CFS is just useless. I think the illness is real but badly misnamed. I do think it is a neurological illness along the lines of MS, ALS, etc...

I think too that many people are misdiagnosed with CFS. Once I got diagnosed its as if the doctor's all through their hands in the air and said that's it then and stopped running anymore tests.

cfswarrior said...


What you said is so true.We don't get taken seriously even though we have a devastating illness.

Sue Jackson said...

Sorry I'm reading these in reverse order - trying to catch up after vacation!

It's good you're having these rule-out tests. They're normally required before a diagnosis of CFS.

I had the same thoughts as Renee - neurological symptoms often stem from Lyme and can get quite severe. Good thing to look into.