Comments | sixshadesofgrey: My neurologist was on the show "Mystery Diagnosis"! (and a health rant)

sixshadesofgrey

My neurologist was on the show "Mystery Diagnosis"! (and a health rant)

Dec 19, 2007 03:34

So I was literally just having a discussion with my boyfriend a few hours ago about whether or not it's time I go back to my neurologist.. or whether I should see another rheumatologist.. I'm not going to get into what happened earler tonight (edit: I rant about it later in this post..hehe).. but I had an episode which made me think again that ( Read more... )

Comments 8

Dr. CC says: It's a brain cloud afterlifekid December 19 2007, 15:33:56 UTC

You should definitely go back to doctors if you feel like your symptoms are worse!! And when you see your doctor you should ask him for his autograph.

I hope you dont have anything else or something more serious. Doesn't Fibro and CF get worse over time? I feel like I read that somewhere.

Re: Dr. CC says: It's a brain cloud sixshadesofgrey December 19 2007, 23:26:18 UTC

It was always to my understand that you DON'T deteriorate with CFIDS and Fibro.. My CFIDS/Fibro doc always told me that you just wax and wane and keep going through cycles of good and bad periods.. but you arent supposed to deteriorate over time..If anything, shouldnt I have gotten a little BETTER with the injections I have been doing since 2004? It's weird cus all fo a sudden there is all this new stuff popping up in my bloodwork.. Doesnt make sense to me. Mitch was looking into some of my new stuff in my most recent bloodwork and thought it sounded a lot like Lupus... I look at my symptoms and I am terrified it's going to be Multiple Sclerosis.. I only has ONE brain MRI to "rule it out" back in 2005.. Who knows if that;s enough? But this Dr. Kelemen rocked..My mom sees him too... SO I wouldnt mind going back to him and telling him what's been going on the past few years..

And I'll get his autograph :P I saved teh episode on my DVR.. I cant wait to tell my mom later he was on the show!

*SQUISH!*

liquid_eve December 19 2007, 23:57:37 UTC

did you ever get a spinal? for MS for lupus?

sixshadesofgrey December 20 2007, 00:16:13 UTC

Spinal? You mea nlike a lumbar puncture? Or an image of my spine? All I've had done is bloodwork (lots of virals and metabolics and stuff) and a brain MRI ONCE in 2005 and an EMG & NCV once a few years ago to check for nerve damage.. all was normal. I've also had doppler radars done on my veins and arteries.. normal. How were you diagnosed? Is one brain MRI from 2005 enough to rule out MS?

Thanks sweetie!
*SQUISHY HUGS*

liquid_eve December 20 2007, 04:03:32 UTC

the final word was the spinal/lumbar puncture which can tell if it's MS or lupus. so yeah needle in the back! but they can tell more things from the spinal fluid than just with the MRI. it's all creepy in there... in the fluid. maybe you should talk to your neuro about having one done.

sixshadesofgrey December 20 2007, 05:43:40 UTC

Thank you so much for the info.. ARGH.. lumbar puncture freaks me out!!!! *shudders* You are a tough cookie.. that's all I gotta say.

Just out of curiosity, before they properly diagnosed you, did they tell you you had fibromyalgia too?

Thread 5

pretendrockstar December 27 2007, 06:50:19 UTC

It's good to hear that you have a good neurologist behind you. I support the idea of seeing him again soon. However a second, third, or fifth opinion can never hurt.

I don't know much about the sickness to really say, but I can empathize with your feeling of frustration when once you can do something and it seems like now you have the decreased ability to do so. I remember you before 2003 and later I know even when you were tired, you still have the spark and fight. I hope you still retain that no matter what. I know it must be really difficult. I hope it gets better.

I'm going to try to make it to LI soon. I'll let you know when.

Infinite love to you and Cookie,
J.