I saw my kidney doc today via tele-health conference. I haven’t let anyone know as of yet about the appointment because it’s hard to know what to say or how to explain it, as I don’t really know what’s up.
They didn’t find any lupus nephritis or mixed connective tissue disease effects on my kidneys which is good I think.
She said in one part they found something a bit weird like stands of the kidney being pulled apart. This can be a rare disease that I can’t remember the name of now but she said if it was for sure the whole biopsy would have looked like that so she’s not sure.
She said all my tests are back to my norm which isn’t completely norm but they’re not at the alarming numbers they were with the one set of tests.
She said things in the alarming tests could have been read wrong, or it could have been this disease that’s known to show up like this out of nowhere and go back to what is my not normal norm.
She also said there’s a possibility that Humira which I’m on could cause this to happen.
I feel like I came out of the appointment with less answers then I went in with and I still don’t know why my kidneys are leaking even some protein and blood.
The Dr. is going to put me on a blood pressure medication but, not for high blood pressure. It’s to see if she can stop the fibers from pulling apart in my kidney and leaking protein.
I’m sure as you read this, you’ll understand why I’m confused and don’t know what to say in updating people. I wish that I could remember the name of the rare disease. I’ve never heard of it before and if you know me at all, you know that I am the queen of medical research.
I will be yet again followed by my kidney doc for the next year (Or as long as I live here) getting blood work done again in two weeks and then every three months there after.
As far as the nerve damage, I’m still in a lot of nerve pain but it doesn’t feel like I’m being stabbed by a hot poker every time I move certain ways now, which at least allows me to get dressed and drive easier. I also still have some numbness. The kidney doc says I need to find out what’s going on with my back and that I should follow up with my Neurologist who never called me back regarding my MRI results. My GP shared them with me.
She said the Neuro should have followed up with me regardless of the results. And I should ask about getting an MRI or a cat scan to figure out what’s wrong with my back. Again I don’t know if a nerve was nicked by the biopsy or if the biopsy triggered my injury into a bad state.
I called the Neuro today and of course I didn’t get anyone in person, so I’ve left a message and will await a callback.
I feel like I’m just getting passed off from doc to doc. Well maybe because I am. I just wish the kidney doc cold have ordered an MRI or cat scan for me rather than make me contact the neuro. The nuero is a 10 hour round trip drive away too and, I can’t make anymore trips. My back, the weather now, and just having had enough, I just can’t do another.
So that’s the update.
Here’s what I know about my body and why I’m not really celebrating…This is the way things always go for me when something is very wrong. It rarely ever shows up in tests right away, and then all of a sudden way down the road what ever is wrong will suddenly start to show up. It happened this way before I lost my bladder and it took 3 years for RA to start showing up on tests..Etc. I knew long before docs that I had RA. I suspect eventually whatever it is will show up. I’m guessing it is related to autoimmune disease be it lupus nephritis or otherwise. I’m guessing the “weird” part she did see will reveal itself further over more time. It just seems I have symptoms always long before it hits my blood or other tests that would reveal the issue. I didn’t bother telling the Dr. that. I didn’t see what the point would be in doing so.
Do any of you have symptoms long before things show up in the Dr.’s text book tests?
Stop the Snow & Bring Back Summer,