Still in pursuit

Neurology appointment today. I hadn’t been in 6 months. Things move slow in the specialist world. And in the mystery diagnosis world. Kind of drives me nuts when people don’t understand that. How many times have I heard, “What do you mean they don’t know what’s wrong with you?!” like it’s my fault I haven’t seen enough doctors or something. Sometimes things just take years to diagnose. Sometimes people never know. That would be the worst. Most of the time I don’t care what I have, I just want to know!

So I am still in pursuit. I took a break all summer because I just had to give it time, but then I started back on the path. I think you have to do that to not get frustrated!

Anyway, I really like my neurologist. I came away with quite a few things today.

  • One is that I have a lot of peripheral neuropathy.
  • There is some underlying reason for it.
  • It’s not my fault.
  • But I could take care of myself better (because that never hurts!) and that can only improve it, not cure it, but improve. At least not make it worse and improve a lot of other things! Okay, so I need to take better care of myself. Working on it.
  • At the same time, I have to work on a balance so that I don’t blame myself for what is going on and judge myself because that just leads to negative coping mechanisms and feeling guilty for resting (hence, not resting).

My test for HNPP, a hereditary predisposition to nerve entrapment syndromes, was negative.

My pain in the pinched nerve areas has improved a lot in the last six months. I can get around the house so much better, sit and sleep without pain, stand to take a shower, etc. I still can’t drive, walk more than a few blocks, be on my feet too long, wear shoes (that’s getting difficult in the winter), or do any exercise with my legs beyond walking around (no leg lifts, no yoga). But I am really thankful that I can get around my house almost all day now without thinking too much about that.

However, there are new symptoms that concerned her and prompted her to schedule me to get an MRI done as a diagnostic procedure for Multiple Sclerosis.

These include:

  • Major increase in numbness and, in the last two months, tingling and pins-and-needles feelings all down my arms and in my lower legs and feet; burning sensations in my hands and feet (this isn’t very bad – knock on wood – but is definitely new); and a problem in coordination in my hands (it feels like I have to try realllly hard to do fine motor tasks like type, put on make-up, etc.).
  • I also have continued burning in my legs (Restless Legs Syndrome-type of thing in how it is alleviated by movement – super annoying because I can’t go on a long walk!), off and on blurrry vision, and all the other GI, etc problems.

So, I will get this MRI scheduled and see what happens with that. So much of me just wants something to test POSITIVE so I KNOW what is going on and know how to attack it, explain it to people, and take care of myself. I hear that is a very common feeling.

***Random, but I love when kids have manners. This nice 13 year old-ish boy gave me his seat on the bus today. And I wasn’t even limping. đŸ™‚ Made my day, especially after sitting outside in the cold for 30 minutes waiting for the bus.

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2 thoughts on “Still in pursuit

  1. You poor thing! You’ve been through so many tests and still…nothing. I am frustrated for you! I hope that they come through with a positive diagnosis so you can be on your way to recovery ASAP.

    I hope that one day someone says that Maya has nice manners too. Alas, I fear this will not be the case…

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