Wednesday, June 15, 2016

unchartered

Poor foot
So....after that ER visit for my foot...it did not end up getting better.  I mean I can now wiggle my big toe a bit, but the patch of numbness is still there and mobility is still severely limited.  My doctor decided it would be best to get me to physical therapy quickly and also get me back up to my previous dose of neurological drugs (that I had worked hard to come off of because I haven't had seizure activity since December!) in the hopes that feeling will return.  This will take a week or two because you have to titrate the medicine slowly.

So I wanted to give an update about how the initial PT evaluation went the other day. The director of the clinic evaluated me and she was really kind and understanding about Lyme disease.

After a thorough evaluation of both legs and feet (my right one is still numb in a particular area and severely immobilized and very weak), she pointed out along the way and after, that everything was really "fitting" MS symptoms - the way my good foot would do a little double take when she asked me to push back against her restraint, etc. She did so many of these sort of tests on both legs/feet and explained scientifically what was happening.

She said most times when you get numbness in the area I have it in, it affects the mobility of the foot in a certain way, but my foot was NOT reacting how she would have thought it would and that made her think maybe it was something neurological COMBINED with an issue with my c-spine which all points to MS.

But at the same time she acknowledged it still could be some odd Lyme thing going on and maybe it would clear up. And her goal as a physical therapist was to strengthen and get my mobility back.

She seemed to puzzle over it a lot and test my feet and legs and hips and reflexes all different ways and even at one point said, "You know how some people are more immune compromised and they seem to get dumped on? I just wonder if you could have Lyme AND MS?"

She said because of the way my feet were reacting, it just wasn't following the normal "pinched nerve" symptoms, so she ruled that out and she thinks it may be a neurological issue and if my neurological meds DO help take the numbness away, that would be great because the longer it's numb, the greater chance for permanent nerve damage.

She's going to have me come in quite often for the next 4 weeks and then re-evaluate and if things haven't gotten better or they have gotten worse, that's when she would want me to see a doctor right away about MS again with all her notes in tow. If things are improving...even a little bit, then we would continue for another 4 weeks and hopefully see the most improvement after that.

So you can be praying that my foot will improve and the numbness will disappear very soon and that no permanent nerve damage will be done!

Thursday, June 9, 2016

footless

....going on about 48 hours now. The oddest thing and we still don't have an explanation for it. Two days ago a portion of my inner foot started tingling then went numb completely and left portions of my foot with very limited mobility and the inability to wiggle my toes or rotate my ankle.  Now, if this had happened 9 months ago or before I probably would have immediately thought: "LYME".  But because I've been doing so much better - no seizures, very few neurological symptoms, and the fact that I'm on such a low regimen of antibiotics - sort of there to "mop up" what's left of Lyme&CO, I did get a bit worried.  I put in a call to the after hours on call Lyme Dr, but didn't get much helpful info because they didn't have my chart in front of them and because after about 2 hours of trying a few "tricks" things seemed to be getting worse, we made the call to go to the ER.
video

Most Lyme patients DREAD the ER - doctors roll their eyes, nurses look at your medication list or hear "Lyme" and then treat you with un-kindness.  I can't tell you how many times this has happened to me.  The anxiety about going to the ER was greater than the anxiety I had about the paralysis of my foot!  That should tell you something.  But I thought it needed to be checked out because once again (as a few years ago when I had that lymph node lump), you can't just assume that "every symptom" is a Lyme symptom.  Since moving to our area we haven't been to the local ER so this was a new experience.

I prayed and prayed that God would bless us with kind nurses and a kind doctor and He answered yes!  The doctor was so understanding and so thorough.  He even asked for the number of the on call Lyme Dr so he could speak with whoever that was to better understand what might be going on.  He said he didn't have much experience with Lyme but he did want to learn more.  He thought my symptoms very odd but didn't dismiss them at all and suspected MS based on a very rigorous examination.  So into the MRI tube I went and lots of blood was drawn so he could check for other things - inflammatory markers, etc.  And story of my life -- it all came back squeaky clean.

But instead of treating me like I was faking (and this has happened before in other doctor's offices and ER's we have visited), he sat down on the bed and talked to my husband and I and told us it may still be MS because sometimes the first "episode" and tests don't always prove positive - you have to wait for another episode to happen.  He said probably not, but to be on the lookout for that.  He said it could be a weird Lyme thing and that my Lyme doctor would follow up with me to see if they could figure out if it had anything to do with that.  And then he said what I wish a lot of doctors would say - he said, "Sometimes I wish we doctors had a big book to open for mysterious, unexplained-by-tests incidents because that would make our jobs so much easier!"  He was so kind!  He did one last check to see if my foot had improved and then was about to discharge me but before he did he said, "You know what, I don't like that you can't flex - it leaves that tendon on the back of your heel just sitting there.  Let's get you a boot so your tendon doesn't go into a sort of "atrophy" -- so it can stretch."  And then told us how late he'd be there that evening if we had any questions or if it got worse and then wished us the best. I was diagnosed with peripheral neuropathy and a few other terms meaning "weakness" and such.  But when we left, even my husband said, "Wow, THAT was a different experience than our last ER visit! He was a great doctor and what nice nurses." (or something to that effect) And it was exactly what I was thinking.

This portion is numb
So that brings us to now -- no change and we are still working with my Lyme Dr to figure out what is going on.  What do you do when the gamete of tests have been run and everything is clean? And yet -- a portion of your foot is numb, you can't wiggle your toes (I've been able to increase to wiggle my big toe!! Go big toe!!) and you can maybe flex your foot a cm off the ground?  This is what we are trying to figure out.  Is there permanent nerve damage?  Will it disappear as quickly as it set on?



I can flex my left foot but can only barely flex the right
I am able to walk, but my "lump foot" seems to drag a bit.  Am I scared? I definitely was when it first set on, but at this point there's nothing to be but calm because like I tell my kids - "Will God still be God if this never goes away?  Yes."  So for now I'm calm.  It would be nice to have answers and I hope with further testing or whatever we'll figure it out, but hopefully and prayerfully it is just a weird "Lyme" thing that will just disappear soon.

As for an update from my last Lyme appointment - it went so well.  My Dr. could tell that I was doing so much better cognitively than the previous appointment!  And it was decided that to see if my energy would improve it would be prudent to continue tapering off some of the unnecessary meds that I just don't need anymore because I am getting better (I haven't had a seizure since December!) and other such ones that I've been on for a long time that just might not be useful anymore and may be causing low energy.  That went well and I'm basically at the point where I should be for my next appointment to re-evaluate things and I did see a slight increase in energy but it's tiny.  The doctor said that energy is one of the last and hardest things to regain for a Lyme patient.

But my husband and I are encouraged.  We've seen so much progress.  I'm tolerating my antibiotic cycles so much better than before (although they are still hard weeks), and while I don't have the energy of a regular woman in her 30's (by far!), I'm in such a better place than I was even 6 months ago.

So prayer request - that the peripheral neuropathy in my foot will disappear soon!