Sorry I've been gone so long

[grannyhotwheels]

Hello all,
I've really missed everyone.  Things haven't been going so well for me but I found a new neuro. and I really feel things are looking up.  He is the first Doctor, besides my trustworthy primary doc., that actually looked me in the eyes and told me he didn't care what type of MS I had, he was going to help me.  He said that, "I know you have been to enough doctors to know you will never be cured, and I'm not going to tell you that you can, but I promise to give you a good quality of life. He went on to tell me that the first thing is getting my pain under control.  He said a whole lot more and I wont bore you with all the conversation but I will tell you for the first time since this all started I feel like I finally found a doctor who cares.

I'm also seeing a Urologist trying to get my bladder problems under control.  The Detrol doesn't seem to be working but I'm still taking it and wearing a catheter at the same time.  I have to wear the catheter long enough for the Lasix to take the swelling down and then it comes out for a few days. (until the swelling comes back)  He wants me to do this until the first of January.  If by then it's still not helping then we may have to discuss the possibility of surgery.  He said it would be a very invasive surgery and be hard for me to get over it.  I can't remember what it's called but he would take a part of the bowel and attach it to the bladder at one end and the other coming out my side which would either be in a bag or a tube which I would drain every so often.  I guess it's like a coloscopy bag a little.  I probably misspelled that.

I'm currently in a wheelchair with very limited mobility.  I have to have help with just about everything.  It sure can be depressing.  My doctor changed my oxycodone to 60mg 3 x per day.  This has helped me a whole lot especially with my arms.  They have been hurting so bad that typing was out of the question.  My fingers are okay it's just holding my arms up that hurts.  Any way upping the pain pills has helped a whole lot.  I know that we can't keep doing that so I sure hope my new doctor figures out something.  He seems to think he can and I'm going to give him the benefit of the doubt.

I would love to hear from ya'll.  Let me know how your doing.  I will try to stay in touch as much as possible.  I still lurk around a lot but just haven't been able to type.

I'll be praying,
Carol

[monotreme]

HI Carol!!!!  I missed you here on the forum.  I am so sorry that you are going through such troubles.  Be sure that you really want that bladder surgery since it is invasive.  I am sure it would increase your need for pain meds too for awhile.  

Are you still able to see your grand-baby every day?  

I believe the name of the software that allows you to speak into a microphone and the words are typed for you is called "Dragon Speak".

Take care and hope to hear from you when you are able.  I'll be praying for you.

Elaine

[Wobbly]

Hi there, it's nice to hear from you.  I'm sorry your not doing so well.... but we are here for you.. and miss you when your not around.  But we do understand that there are times when it's very difficult to be online.

I'm still waiting for results and a Dx.. waiting for more testing as well... the MS specialist said to write down all my symptoms which I'm doing and feel like I'm typing a book at times.  

Its good you found a Dr that will help you and seems to really care how you feel.  Now, that's a good thing.

stay in touch when you can...really good to hear from you and hope the best with the Urologist..
update us on how things go.

take care
wobbly
undx

[doni54]

Hi Hot Legs!!!

I've missed you so much and think of you every day.  I was really worried cause I had sent you a couple of pm's and hadn't heard anything.

That is great that you have found a good neuro who wants to make things better for you, you sure deserve it.

I know nothing about the bladder surgery, but I know you will make the decision that is right for you.

I will pray that this new neuro gets you feeling better and walking again, I know how much you want to get out of that wheelchair.

Keep in touch when you feel like it, it's just not the same here without you.

Love & Many hugs,
doni

[sllowe]

Hi Granny,

Oh, happy Day! You found this guy! What great news.  You've not been well for a long while, and I'm so glad that finally - finally, you are going to have somene working hard to manage these issues.  

Granny, I don't know a lot about this operation, and it sounds scary to me. As does how everything works once it's done. But, I will pray that you have peace with you and your Drs decisions.

As for me, I restarted the Rebif, so far so good.  I'm sure you remember the allergic reaction drama. Had some jerkyness going on w/the pressure in my spine for a few months that started to make me nuts, along with my back burning skin bit, but it's gotten better so I'm grateful.

I went to my cute urologist yesterday, and my kidneys are clear. So, I don't go back to him for a yr. dammit...lol...

I'm glad to see you hear.  I know Quix was talking about the software that you can talk into for typing.  I just saw it in the store, but can't remember what the name is.

Sure do miss you.  How is everyone else handling what is going on with you.  I don't want to make you type more, but wonder if everyone is supportive and helpful.

Love you much,
Shell

[LLWB]

I am so happy to see you. I have been worried when I didn't see you name. Thank God for your new neuro. Sounds like someone is finally taking your pain seriously. I hate hearing people say their docs say learn to live with it. WHY SHOULD WE!!!  Chronic Pain controls our who lives. I'm sorry to hear your arms have been bothering you so much. I'm glad you are well enough to post. You always give such good advice to others, and your prayers are so important. I personally thank you for them. You helped me so much when my son "ran away from home" last year. As you rmember, he didn't go far! The disagreements with his dad seem to be in the past. He is doing well, graduated from high school last spring, and will finish his 2 year associates degree in one year, this June.

I have been doing PT for the past 3 months, and the PT finally told me until I quit my job, I would continue to be in pain every day. Can't afford to do that without health insurance. I just had lung function tests, which I passed with flying colors. No emphsema or COPD, just get SOB climbing stairs etc. because out of shape due to not being able to excercise. Catch 22.   This is probably more than you wanted to know, LOL! I'm rambling, but just so happy to hear from you again.

Take care and follow this new doc's instructions. He sounds like a keeper.

Hugs and prayers
Maggie

[Fluffysmom]

It's so good to see you!

I'm sorry that you've not been doing well, but I'm very happy that you found a good neuro, that actually listens and cares.  What a find!

I read about that surgery just the other day; I'm seeing a urogynecologist, and was researching what they can do for bladder problems, and read a little about that one.  Of course, my brain is not bringing up any more information than that right now, sorry.

I'm glad that the increase in pain meds helps so much, and that your doctor isn't afraid to increase them as needed to improve your quality of life.  Quality of life is so important!

I recently got a free week's trial of Provigil, and the difference it made with my fatigue was like night and day.  My doctor is fighting with my insurance company to get it covered, as I don't have a diagnosis that fits their narrow guidelines for that expensive drug.  My PCP is awesome, I'm sure she'll work something out.

I spent several days in Disneyland with my best friend, her daughter, and her three grandsons, and I was able to get around, laugh and have fun.  Before, I was so tired all the time and dizzy and foggy-brained that I didn't get much accomplished in a day.

It's good to know that you've still been around.  I'm glad that you're able to type now, and can post now and then.  

Hugs,

Kathy