Thursday, November 14, 2013

My health adventures...THE FINALE... sort of, lol

So where was I, hehe

My fabulous neurologist has been running all kinds of tests to figure out what is wrong with my legs, with no answers. So, he decided to to a biopsy of the muscle and main nerve in my right leg. That's the weakest one, it gives out all the time and almost throws me to the floor if I don't catch myself on something.
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I had the biopsy on September 30. It's actual surgery, they knock you out and everything. You even have internal and external stitches. So I settled into 10 days of no walking and just laying on the couch. It really hurt especially the muscle the removed fro my upper thigh, ug. By I survived, mostly. They said it would be a couple months for  the results to come in because it gets sent off to the Mayo Clinic.

Much to my surprise they had the results in before I even got my stitches out, YAY!

I saw the neurologist. For some reason my immune system has gone all wonky and is attacking the nerves in my feet and legs (it's also beginning to effect my hands). This is going to be progressive, it will get worse.

 So we have to try to slow it down.He's starting me on a immune suppressive medication hoping my immune system will calm down and maybe even give the nerves a chance to repair themselves a bit. But that opens me up to a whole slew of other problems, while taking this medications I will be completely open to infection. And really bad infections are a huge side effect of this med. Makes it kind of scary. I'll have to be super careful around my nieces as they always have some sort of sniffle. My dad wants to buy me masks to wear when I go grocery shopping or to doctor appointments.

Not sure how I feel about doing this.

He didn't give what I have a name, so I still don't know exactly what I'm fighting. I like it to have a name. At least then I could join a support group and discuss with other people what I'm going thru. Would be nice to talk to someone about it.

Here's a list of my symptoms: liver irritation, anemia, neuropathy, dry skin (that might be the meds), itchy eyes, sometimes my eyes don't want to focus.

If that sounds like anything you've heard of, let me know. My doctors are pretty much open to testing me for anything, if it might bring a more specific answer.

Oh yeah and nose bleeds. I'm not just talking a dribble either. Once the nose bleed starts it goes on for 1-2.5 hours, yep hours. And it gushes. I've brought it up to my doctors, but they pretty much blow it off, but it's really irritating to me.

I'll try to keep updating as much as I can.I get a feeling when the new med kicks in, I may have to go thru an adjustment week or 2. But I'll try my damnedest.



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