Sleep study and EMG

[flutterby]

Sleep study was normal. Neurologist was pretty surprised, considering how much I sleep and how exhausted I still am all of the time. I guess that's why they call it Chronic Fatigue. Heh.

EMG showed nothing new. Left ulnar nerve still an issue, only now it's showing signs of damage. He said to do therapy and recheck in 4 months. If worse, we'll do surgery.

Personally, I think it's stable. He said if it starts tingling for more than 24 hours to let him know. I told him that it doesn't do that anymore; that it was doing that when I had it checked the first time. It does get tingly, but not for long periods of time and doesn't go completely numb like it used to. So, he's thinking it's stable, too, and that the other neurologist wasn't aggressive enough. I have zero muscle tone in the pinky and ring fingers on my left hand.

So, no other neuropathy, no myopathy. No explanations for the stupid symptoms. Said the muscle weakness is probably from the fibro. Balance issues? He said if it was just a vestibular weakness like the audiologist said, that I'd be getting vertigo. I very rarely get that. I just start to tip over, or lose myself in space and walk into counters, walls, etc. He said he didn't know...and that I'm so young.....

Lovely. I love going through more tests just to get no answers.

This neurologist seems to be a good guy, though.

 

[ML]

Finding out that nothing (new) is wrong is such a double edged sword. No one wants to find something wrong BUT, it would sure be nice to have answers. Hugs,

 

[flutterby]

The thing is, finding out that "nothing" is wrong doesn't help me any. Something is obviously wrong. I go through all of these tests hoping for answers - and the doctors do these tests based on my history and clinical presentation because they hope they can provide answers.

So, not getting any answers doesn't make it "nothing wrong"; it just makes it, "we still don't know".

I have fibromyalgia and Chronic Fatigue Syndrome. That we know. But, I have a lot of symptoms that don't match either one of those, as well. There's a lot of guessing. The neuro was sure that the muscle weakness and cognitive issues would be related to a sleep issue when I saw him the first time. Sleep study was normal, so now he's saying it could be from the fibro. And it can be. There's just so much guessing going on and no treatment.

I have the lip biopsy Jan 6. After that, I'm done with tests unless they can give me a good reason why to do more. Although, if the Sjogren's test (lip biopsy) is negative, I will be really interested in finding out why I don't have any salivary glands in my lips.

I'm just frustrated. And tired. So exhausted. I'm probably not making a lot of sense. I just want a little bit of my life back.

 

[timer lady]

Heather, I stopped a long time ago (tho my doctor's haven't) looking for reasons on why my sed rate climbs like it does with-o steroids. We know there is likely a vascular inflamation someplace - where, who knows?

In the meantime, it's time for you dear lady, to start taking charge of your medical team & treatment. The cause doesn't seem to be killing you; now is the time to use other treatments that will strengthen you. Whatever that is for you.

The depression that comes with chronic illness is getting in the way of you having a life. You're in a cycle of negatives. I'm not being critical - know that I know what you're are going through. Know that I still struggle daily as well.

AND I got good & angry & took back my life as best I could. I may not get back everything - may not know all the answers. If the long term treatment is working I'm okay with that.

I hate to see you so chronically depressed; so chronically out of sorts.

Take care - you can get thru this. by the way, my mother had Sjrogren's Disease. Fascinating little autoimmune disorder if I do say so myself.

 

[maril]

flutterby: Hope the ulnar nerve therapy works well, so you won't have to face surgery. Also, good luck with the biopsy in January.

I understand that you would be exhausted and frustrated and am sorry you have to deal with this. It is positive that you have a good neuro doctor. Hugs!

 

[flutterby]

Linda, you are right. I got so angry last night that I felt toxic.

I am really struggling with depression. It seems to hit me in waves. Thing is, I'm not so sure that the cause isn't killing me. I have advanced atherosclerosis - autoimmune disorders are linked to that and at a young age. In my mind, not treating the cause just allows the inflammatory process to continue. Atherosclerosis is an inflammatory process. I guess that's why I feel such urgency to figure this out and get treatment beyond rebuilding my strength and managing my fatigue - which I am in the process of doing. If only the place would call me for the appointment. I called them today and they said they would call me back. Still waiting.

I'm rambling.

I honestly believe that if we don't find the cause and treat it, I won't live beyond another 10 years. There is the pain and fatigue...but mostly, I just feel unwell. Dramatic or not, I feel like I'm slowly dying - which is exactly how I felt before the heart attack.

So, yeah, I put it out there. Dramatic, morbid, whatever - it's what I feel in my body.

For years with the depression, I prayed - begged - for death. Maybe I'm just finally getting what I wished for.