Goodness it has been awhile since I posted on this journal. I promised myself I was going to be so good about it. It is major helpful to go back and read what was happening when. I need to be even more specific. I need to make a timeline, the thought of it just makes me want to crawl back under the covers... waaay to much work...

OK  Things are actually going alright overall right now.

Fatigue - has lessened, I am up and about nearly all day with breaks in between, course sometimes this isn't the case and it will hit me and I have to crash. But overall much of a letup.

Lymph nodes- The armpit area is still somewhat painful and swollen. Only the L armpit as always.

Joint pain- much eased off

Muscle spasms-  nearly ceased right now  :)

Numbness, buzzing, stabbing, tingling-  On the good side right now. Still alot of pain in the evenings with the feet and legs, always much worse when I initially lie down on the couch in the evening. I am learning a bit - that if it is Automatic nervous system damage that the blood is likely pooling in the lower extremeties and maybe that is causing the pain when I lie down- the blood trying to move back upward.

Dizziness- not bad right now

Brain fog - also not bad right now :)  I feel like I can actually think and read, so nice.

Headaches- not bad at all right now

No falling or weird foot situations lately

Bladder- still much trouble with going :(  and other problems


The C Spine came back clear. Neuro is really leaning toward Autonomic dysfunction & is looking toward a couple other tests to determine. Could this be the end of being lost for me? I dare not even hope. What would it be like to have an answer for everytime someone asks what I have? What would it be like to be done searcing and being jabbed and tortured. I can only dream.

I am really looking forward to accomplishing things with the dogs this year. I need to get my scooter arranged. The insurance didn't have any provider in the network. Good grief.
Ahh the perks of living in the wastelands. lol  Luckily there are some bennies. I talked to a lady in our area who has a four wheel scooter and she gave me some tips and her thoughts- she really recommends the 4 wheel over the 3 wheel. She said driving it up to get it in the van is completely doable. yay! No expensive lift thingy. She offered to sell me one of hers since she has two, I will look into finishing with the insurance first, hope they won't balk. I am the hole in their wallet hehehe, I bet they would love to get rid of me! She wants a fair chunk of change for her extra one. I have other things I want to buy. ;-)   But alas I know I need it.

I wonder how things will go with this new guy. I am always like a deer in the headlights with a new doc. Will they be sympathetic and helpful, or clueless and worthless. :(  
I have read he is a researcher, maybe that is a good thing. The neuro likes and recommends him also, so that makes me feel good.

He said the bladder is 'neurogenic'. Oh joy, something else #@# ed up. I knew that one was coming with the problems going.

Well, how can I make my scooter look hip? Is that a play on words? LOL  Shoot I will just be glad to be able to plan things and know I can make it all day. :))

I absolutely cannot keep up with the forum now, it speeds by like a blur.  :(    I wish I knew where I belonged. I am eternally lost in the woods.

Fizzle

Thank heavens, the downer has passed somewhat. That one was worrying me a little. I am waiting to see my Neuro for the results of the C Spine and his interpretation of the ttt, and also the thyroid biopsy. At first I was a bit on edge over the biopsy, it felt like a frightening place to be, worrying about the big cancer word. I have pushed it to the back of my mind and actually forget (imagine that LOL) about it once in a while.

My strength has returned to a small degree. I have been up and moving about, the muscle twitches/spasms continue, but far less. My legs do not feel as wobbly and weak.

Forbid, the next 'flair up', I am going to take my temperature every day just to see what the results are. This might shed some light on the Ebv thoughts, whether an Ebv flair up is the cause, or the MonSter. Right now, I can't bear to think of another flair up and being couch bound. The sun is shining and I am thinking of what I want to accomlish this year, I have a list. LOL


Jazzy

Today is the Tilt table test. I am wondering if it will provide some answers after all this time. I think I am down emotionally, but I think it is residue from the difficult December and January, and the new developements. I really need to be on the other side of it, I hate feeling this way.
Had the C spine MRI a couple days ago and haven't heard the results yet. Muscle spasms have improved, but do remain in small amounts. The weakness, fatigue and spasms did begin to improve all at the same time. I am going to keep track of this from now on.

Wonder what will happen today.

Jazzy

Current symptoms-

      Continued muscle twitching that has evolved into small muscle spasms

       The foot thing happened again, but lasted alot less in duration and intensity. This same leg is buzzing off and on.

        Fatigue- still here and more than my normal amount.

        Lymph nodes - in the L armpit area have flared up again, that is always fun. Not.

        The legs are agony in the evening when I try to lie down and rest.


My appointment is coming up soon. This is the first appointment since the heart cath. I wonder what he will think about the results of that, and there being no Pfo. Why was my bubble test positive.
So many questions and no answers.

Nothing new on the dogs. The blue baby is still here and no word what is happening with that. He is a smart one, that is for sure. I am tempted to keep him, its always a temptation. lol  His intelligence is really drawing me to him. And he's gorgeous too, that is nice. :)  

I think everyone is getting a bit of cabin fever. Its the coldest here, it has been yet this winter. Thankfully the wind is fairly calm. Hope it stays that way, I can't stand that wind chill.

Fizzle out