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Neurologist Appt.

Jul 02, 2010 - 20 comments

Hi Everyone,
My neuro appt. went pretty well. He is a kind and soulful doctor. You can tell he cares. So, he said that my peripheral neuropathy is caused by my active Epstein Barr Virus and that more than likely, most if not all, my symptoms are side effects of the virus because when it is active, it is nasty. It causes numerous things,including cancers, like leukemia and esophageal, so will keep on top of that, especially as I have GERD and a hiatel hernia already. So....he said I probably won't get worse with the PN because I don't have an underlying condition that causes it, like diabetes. BUT, he did say that he thought I had fibromyalgia (and when I told him about my rheumy and the things he said, he was shocked and said it was totally uncalled for).  Anyway, he put me on medication for the fibro and it also helps the PN so kill two isses with one pill. I am on Gabapentin for now, to see how it works. I have only been on it for 1 day so can't say yet.  Also, he does want to do a brain MRI to rule out Multiple Sclerosis. I am sure that will come out fine, but ok, just be sure LOL - you never know.  so that is Tuesday. I am extremely claustrophobic and so they are giving me Valium for the procedure, please pray it is enough Valium. I am still worried as I had that recent bone scan in which I went into panic attack mode. So....that is basically it.
Just alot of stress in my life right now.
My ex is fighting me over child support, my mom is decling rapidly and I have had to do most of the stuff with and about her, my son who is going off to college is being extremely difficult, so although I am really sad to see him go, I might kick his butt out the door in August, and Jerry's daughters are being a pain in the ***, well one in particular. So, with all this, just too much stress and I am finding it a very hard time to keep up on the forum and emails/notes, so if you don't hear from me, don't worry, I will be back!!

Hugs,
Colleen

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187666 tn?1331173345
by ireneo, Jul 02, 2010
That's a lot going on. The MRI should be fairly quick and yes, they'll give you valium to help. Just close your eyes and float away. They did that with my Mom, gave her a little too much and she got a bit upset the next day. Couldn't remember a thing that happened even though she was talking to us and even ate lunch while we were there. She was  convinced she had a stroke or something. So I don't know if extra valium is the answer.

Seeing the son go has it's sentimental moments but it does feel good to have part of your life freed up. I love my kids dearly but am thrilled they're on their own now.

All the stress will exacerbate fibro if you have it. As a friend keeps telling me  - be a duck and let it roll off. I've been tempted to buy one of those t-shirts that says "Whatever!"  It helps to think that way. Don't let people dump their problems on your shoulders. You have enough of your own. Just pat them on the shoulder, tell them you're sorry to hear about that and then ask "What are you going to do about it?"  Very effective in dealing with the kids who still expect the parents to take care of everything for them.

I'll be watching for the next update. Take care, irene

483733 tn?1326798446
by TrudieC, Jul 02, 2010
Such good news (OK, not nice that you have fibro and PN but at least you have a plan).  I so hope you will get some relief soon with the new med.  So much going on and wish I could be there to lend a hand or at least a shoulder to cry on.  You do need to release some of that pent up stress so do try to find a way to have some alone time and a good cry can definitely help.  Try to keep on a healthy diet.  I know it is hard when you are so stressed.  Is there a way you and Jerry can get away for even a weekend?  My favourite escape when life is too much is to spend as much time as I want soaking in the tub with some epsom salts and some nice bath oil.  I've learned to do this every day and I meditate.  So helpful!

Love you so much and really wish you didn't have so many demands on you.  Stay strong.

Hugs, Trudie

Avatar universal
by shewrites, Jul 02, 2010
I sympathize with your feelings about an MRI.  I had an "open MRI" of my head once, and I still remember it with claustrophobic feelings.   I got through it because a very nice woman who worked there read me Russian fairy tales during the procedure.  (I think she selected them because they're unfamiliar -- and they were quite distracting.)  It helped that she was sitting right next to me, could reach in and hold my hand, I think.  It's not an Xray, you know, so someone can be near you without danger.    

329994 tn?1301663248
by lvfrogs, Jul 03, 2010
Irene, you always have the best wisdom and thanks for sharing that with me, both the valium and letting it roll off my shoulders. I think asking the kids "what are you doing about it" is great and I will try and remember that!!

Trudie, I love you too and I wish you were closer. It is good news in that I finally have a diagnosis and can go forward, that is a good thing. I love your bath idea and would do that if we had a bathtub. The boys have one in their bathroom, but even though I clean it, no, I am not soaking in it, lol.  We do have a vacation planned late July, right after the wedding, so looking forward to that.

Shewrites, thanks for letting me know that because I might need someone nearby even with the Valium. I just hate having panic attacks, you can't control them and they are so hard to stop!! Russian fairy tales, very interesting!!! They must have been distracting. This place - the people are friendly over the phone so I am hoping they will be good to me.

I will let you all know, thank you!! Love you,
Colleen



194838 tn?1303428544
by silver&gold, Jul 04, 2010
Hi Colleen, have sent you a PM, will be thinking of you on Tuesday and praying that all is good.

Love
Angie

Avatar universal
by helenl89, Jul 04, 2010
Had MRI's before, used to just take myself to a place without kids and husbands etc. I used to picture myself on a deserted island, with no people, phones and anything else that could bug me. I'm glad

Avatar universal
by helenl89, Jul 04, 2010
yu are getting some answers. Irene is right. One needs to let it roll off sometimes. At the end of the day reserve yourself some me time, were no one is allowed to bug you at all.. Sorry about split message hit wrong key earlier. Let me know how tues goes lol

378425 tn?1305628294
by dawnlyn, Jul 04, 2010
Colleen,

I agree with Helen it sounds like you are getting answers....Hang in there...I will be thinking of you on Tuesday.  You seem so very stressed, take a deep breath now and then....and do let some of it roll off of you.  You sound like you are being stretched in way too many directions.  I hope you are having a good holiday.  We can see our towns fireworks from my house - so I plan on watching in lawn chair in p.j.'s.  Trying to relax and not get too uptight....Please try to relax and just rest for the rest of the holiday weekend.  

I have two sons in college, one has actually moved out and living in city where he goes to school.  Does not come home for the summer because he works there to.  It is hard to let go.  I Hope you get your Mom to go along with the things you are trying to do for her.  As I said before Moms can be stubborn.  I think it is hard for them to reverse roles.  

I have been thinking about you, thanks for being here for me.....I am feeling pretty good now except for being tired, but I think that is to be expected.  I will try to write more later.

Love,
Dawnlyn

329994 tn?1301663248
by lvfrogs, Jul 07, 2010
Thanks Dawnlyn for your comments!!! I hope you enjoyed the fireworks in your pj's. That is the best way. It was overcast here so could hear them all but not see them :(
This is my 4th son off to college and it shouldn't bother me but for some reason it is. I still have one at home, he is 15. He is looking forward to his brother being gone,lol.
There is just alot on my plate right now, alot and trouble w/in Jerry's family with his daughter's wedding, lots of stress but I will do my best to rest and relax!!!

Now for the update on my brain MRI. Of course, I don't have answers yet, I just wanted you all to know I made it through it LOL
They did give me Valium but didn't let it take effect - they took me back right away, so it was useless really. I hope to never go through this again, I had a splitting headache to begin with, then of course, had to lay flat, which I hate and then the whole claustrophobic thing and the loud noises. It was horrible, but I made it through with the grace of God, the Lord's prayer, over and over again, I recited my ABC's and even sang Old McDonald Had a Farm, very good because you really have to think about the animals etc. I know, I am crazy!!! But I got through it. Never again though. Next time, I will pay the $125 to be knocked out. Jerry thinks I am crazy but I told him I am starting a fund right now to save for that if I ever should need it.

I will let you all know when I get the results and I cannot thank you enough for your concern and your love and your prayers!
Love you all,
Colleen

875426 tn?1325528416
by LivingInHope, Jul 07, 2010
Glad you got through and you are on this side of time of the MRI- it's having been done already!  I like that saying "This too shall pass".

187666 tn?1331173345
by ireneo, Jul 07, 2010
Old McDonald?  I bet that had the techies laughing. You should have done the 99 bottles of beer on the wall. They would have gone nuts and gotten the test done faster. Any idea how long you have to wait for the results? I hope the headache was just stress induced and you're feeling better now. Keep us posted when you hear.

irene

773755 tn?1328119777
by acker, Jul 07, 2010
yay - keep THAT dr!
what a hideous time at mri. sorry it is so bothersome.
big hugs
see you when the time is right

Avatar universal
by helenl89, Jul 08, 2010
I did the name game on my last mri, now that drove people crazy. Whatever works to get us through.

329994 tn?1301663248
by lvfrogs, Jul 08, 2010
LOL, at the 99 bottles of beer. Wish I thought of that. It was all in my head as I couldn't be moving my mouth,so the techies had no clue, but if they had known, it would have been funny!!!
Thank you everyone, I will definitely let you know the results!!!

Hugs to all,
colleen

485259 tn?1519047026
by painterchic, Jul 08, 2010
As always you make me laugh. Sorry you are going through so much, when one thing lets up another seems to take it's place but I hope you are starting to see the light at the end of this long tunnel. Easier said than done, but try and relax, stress will make it all so much worse. Like giving the team another point, you know? Especially drama queens and teenagers.
Hang in there my friend,
Jo

Avatar universal
by rebel5, Jul 08, 2010
You have my prayers and love sweetie, it always seems to all happen at one time, rest up take care fo yourself xoxo Love you

329994 tn?1301663248
by lvfrogs, Jul 13, 2010
Just an update you all! Brain MRI came back no MS. Yeah, that was good. He did say there are some spots that he wants to talk about but aren't anything that can't wait until the next appt. in August. He said they are related to my heart. I don't understand that at all but I guess he will tell me. and of course, I do have a heart condition. So all in all, I am relieved and wanted to let you guys know and thank you as always for your prayers. You are my heart savers!

Hugs,
colleen

194838 tn?1303428544
by silver&gold, Jul 13, 2010
I am so relieved that MS has been ruled out Colleen, I have been praying for that good news for you!. I have not heard of the spots being connecting to heart condition but your Doc is certainly not panicking about the results or he would have moved your August appointment up.
I,m so glad its good news, take care .

Love & hugs
Angie

356929 tn?1246389756
by Sandymac, Jul 14, 2010
Oh Colleen, I had no idea about any of this ! We haven't spoken in so long and I'm not on the forum as often as I used to be.. I was thinking of you only the other day and I should have sent a note right there and then ! I miss talking with you !

Sounds like you're on top of things and at least you can rule out MS !!! Please keep us posted ! And, as Painterchic said "Hang in there" ... and speaking about teenagers---"This too shall pass".... Been there , done that !!! Stay in touch and TRY to relax

Love,
Sandy

329994 tn?1301663248
by lvfrogs, Jul 17, 2010
Angie, thank you. It is good news and the heart stuff will probably be related to my condition and I already know I have that, lol.  Things are at least finally moving in the right direction.

Sandy, yes, long time no talkee!! Are you enjoying this horrible heat??? I hope you are going up to North Carolina soon and get away from some of it. I know they have it hot too but their nights at least cool off. Here we go from 95 to 85 at night!

Thanks for all the advice. Yes, 4th teenager - so we know the drill, just tired of it LOL and we have one more to go. He is 15 and keeps promising me that he won't be like his big brothers, oh that is so cute because, yes he will. They all get like this at 18 so you want them to move out! It is God's plan, I believe, to help us moms (and dads) to get through the separation!

Thank you everyone. Will update if there is anything else going on!
Love you all,
Colleen

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