Nerve Damage Update

It’s been a while. As you can tell I blog in spurts. Sometimes I have lots to say and other times it’s just the same old.

Very recently I finally had the physiotherapist come in. She gave me more answers then all the docs and specialists I’ve seen as of late put together.

I even got test results from years back.

To start with though the nerve damage..She said where the damage is on my thigh can come from near my kidney. Go figure. She thinks that they irritated or nicked a nerve during the biopsy. Hmm…isn’t that what I’ve been asking all the docs since it happened? I’m so grateful she gave me answers. She said she believes it’s surface nerves because I don’t have weakness when I walk. I did the first three days but that eased up.

So it’s basically what I was told by the E.R. doc. It will take a long time to get the feeling back. The nerve regenerates at a mind┬ánumbing speed of 1 cm every 48 hours. Wow that’s well ummm…slow.

I’m to stimulate the numb area with different textures to help awaken the nerves. Ouch. Around the numb area is where the nerve pain is. Speaking of nerve pain it hurts still but only when touched and or stimulated with different textures. It’s not crippling me at least.

That aside I’m riddled with osteoarthritis. The Physiotherapist said I have older bones then my age. Go me! That’s on top of the lupus and RA and or MCTD. Which ever the rheumie decides I have on a given day. The therapist gave me some exercises to help with my back pain/injury. And I forgot she told me she thinks that when I hurt my back what happened is I likely tore scar tissue. So another answer the docs didn’t give me. And contrary to what the neurologist said. (That I couldn’t injure myself that bad by just pulling my boot off) the therapist said it can happen even with the slightest move. I’m thinking physiotherapists know more then docs. Things that make you go “Hmmm….”

The Humira I’m on is helping with pain. I know this as it starts to wear off about 10 days after I’ve taken it. As much as I don’t like it wearing off, I’m glad to be aware of the difference it’s making.

It’s usually really hard to tell. You always have pain and you often don’t know if it would be much worse off the meds, so with it wearing off before my next dose I know it’s helping.

I hope that it keeps helping.

How are all of you doing? Are you ready for Christmas? Do you dread it? More so the social obligations? Thankfully we don’t have any and we like it that way. It’s actually mostly a restful time for us. Mr. CrankyPants takes some of his holiday time over Christmas so he has 12 days off. We look forward to that.

If I don’t get to blogging again before Christmas. I hope you all have a very Merry Christmas and a Happy New Year. Also some low pain days!

Christmas Lights & Turkey Dinners,

CrankyPants

 

 

Nephrologist Visit…

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.

Soo..

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,

CrankyPants