Calling all limbo-landers limbo check in 5/15/2012

[minivanmama]

Good Afternoon limbo islanders! The sun is out and the sea breeze is blowing. What a great time to visit the island. So grab a cabana boy or girl and order somthing to eat and drink. Grab a hammock and tell us how you are doing.

How are you feeling this week? Hope everyone is feeling good and doing better.

Any doctor apts this week? Any tests this week? Any doctors or nurses that need to swim with the sharks? Any one need to scream?

In island news - Welcome to all our new islanders. I am glad that you found us and know you are not alone as you look for answers.

If you are undiagnosed then this is the place for you. Come and tell us your story. The island is waiting.

Hi everyone i did get back on last night and let everyone know what happend at the neuros. I just want to thank everyone form the bottom of my heart for there thoughts and prayers and get well wishes. They are so appreciated and i am so thankful for you all.

My arm is going to take awhile to get better. It is hurting now so i am going to take a rest in my hammock. I will check back later.

(((Hugs))) to everyone.

To lynnepynne - You can stay as long as you need to. I am sorry i could not get back to you sooner. We are always here for you. (((hugs)))

[lusciousleaves]

Hi MVM. Really sorry your neuro didn't have any answers for you. It all gets so frustrating, especially when it comes across sounding like the problems result from a character or personal flaw of some sort. It's so hard not to take it the wrong way.

I don't know what would cause NCV to be abnormal. Would that be some kind of nerve compression? Maybe he was just taking a stab at why that would be abnormal and he didn't find anything in the MRI that would cause it? Just trying to make sense of it. Glad you're feeling better and hope your arm heals quickly.

It looks like I may have had a UTI afterall. The antibiotics are finally doing their job but it took quite awhile this time. Been feeling flu like for a week now and finally today it eased up. Seeing the uro guy for a followup and will see what he has to say. Still having back pain in the kidney area though, could be just a back spasm.

Last week was brutal, so many problems came on at once, as usually happens. I'm finally getting back to my norm, albeit on a little more sleep than usual. Spent the day in the garden planting veggies and setting up irrigation. So happy to be outside gardening again.

[JayEm]

Minivanmama, I hope your arm heals quickly.

Lusciousleaves, I have to say that I'm so jealous every time I read about you gardening! We have an enormous back yard on our new place, and I've wanted to put in a garden for a while. This spring, I did buy a few bare-root berry bushes because they were for sale so cheap at the store. I got my nephews to come dig the holes, so that helped. But I'm glad it's been raining, because I've been struggling to get the strength to water them.

I'm feeling a little bummed out, because my massage therapist is ending her massage practice due to health reasons. I'm glad she's taking care of herself, but I want to whine a little bit about losing one of the two things that has actually helped to improve my energy and functioning. I'm hoping she'll have some recommendations of other massage therapists in the area.

Sometimes it's hard to focus on the good things in life! But I'll try: My partner and I went to an event she's been going to for years, a large-size used clothing sale. We spent about $175 and came home with two enormous bags full of great clothes. Some of them are even for me!

If I can get the energy and coordination together, I'm going to convert a couple of pairs of overalls into zip-off pants/shorts. That will be great: nothing tight on my mid-section, and the option of going from long pants to shorts without having to change clothes.

Today, my big exciting activity was getting out of the house to vote on the school board budget for the year.

[maitrimama]

just another thing that doesn't make sense

Hi all - i hope this finds everyone coasting merrily along vs struggling uphill. I was supposed to have the kidney biopsies done last week but because they can't get my white blood cell count (in urine and blood) under control the biopsies have been put on hold. I am on my second antibiotic plus they can't pinpoint where the infection is.

Though I have said no to some tests I did agree to renal and pelvic ultrasounds. I haven't spoken to my (new) GP or seen the radiologist report yet but based on what the tech said (he had to ask me extra questions) and his brief notes with the images it is clear that my bladder is retaining urine but that doesn't fit my symptoms AT ALL! With my bladder 1/3 full it felt totally empty. My problem is that I have gone from going 10 times a day to only 5 times daily with much lower volume. No urgency and No leakage. When the tech mentioned it might be neurogenic I wanted to tell him to shut up. I am not going back down that bumpy, blind curves, dead end MS road!

[minivanmama]

Lusciousleaves - Good to see you. I am so gald that you were able to get out and work in your garden. That must have felt so good.

I am glad that you are feeling better and that the antibiotics are now working. I hope that your back pain does get better soon. I am glad that this week has been better for you and i hope it stays that way.

The nerve study showed that i have nerve damage and that is why it is abnormal. I have not had a chance to go and pick up my MRI report. It is all so frustrating.

Lots of (((hugs))) and thank you for thinking of me.

JayEm - Good to see you. Glad that you were able to get out and go vote. Sounds like you had a good time shopping and i hope you can get the energy up soon to make your clothing the way you want it. Sounds all good.

I am sorry that your massage therapist is going to her paratice. I know that must be hard. I hope she has someone good that she can send you too. I would be up set also if i had to repalce some of the doctors that are on my team.

Lots of (((hugs))) and thank you for thinking of me.

Maitrimama - Good to see you. I am sorry that you had put off the kidney biopsis. I hope that you don't have to wait to long. I hope thay find out what is going on soon so you can get better.

I have bladder problems also. I did not want to hear that it was neurogenic. It is frustrating to hear and i hope thay can help you out and get you to feeling better.

Lots of (((hugs)))


Well i am off to take my meds and then off to bed. Good night limbo island and sweet dreams. Lots of (((hugs))) everyone.

[lusciousleaves]

JayEm, I'm sorry. This is the first in three years I've actually done any gardening. I've been feeling so crummy all that time, there was no energy for it. Still not done planting. Had a detour yesterday and today. Still have some plants and seeds to pick up.

Sorry to hear about your MT. I've had to let my practice go, too, and it was hard. I may get back into it later in the year if things continue to improve, but that would mean starting all over again. My regs would be happy, though. Best way to find the good therapists is to ask around. Whatever technique it is you like best, maybe you'll know someone who knows someone.

Maitrimama, I hope they manage to get that infection under control soon. Any chances the potentially neurogenic bladder contributed to the development of this new problem? Sorry to hear that things have been delayed. My uro dx neurogenic bladder last spring. He was a little ticked when I wouldn't accept his script to control it, telling me it would get worse and I was the one going to have to walk around peeing my pants without it. LOL Guess what? Just like everything else, it got better. In fact, I've got fewer symptoms like that now than I had 3 years ago. It's improved, and less retention as well. There is hope.

MVM, thank you for the well wishes. Uro said the back spasms are something else if the bladder issues are better. He said there would be both, and then told me some of the hesitancy issues are normal during certain times for people with IC. That was good to hear. UA still 'funky' he says, and call if things come back.

Now about this diaphragm/rib spasm thing that seems to come on for months at a time starting with severe episodes, my GP is going to check this out for a possible pancreatitis. I asked, seeing as how the pain sounds exactly like that of a pancreatitis attack, and the t-spine MRI showed nothing. He wanted to work me up for gastro issues last summer, but at that point I got so sick of tests and appointments I just dropped the ball. Maybe it's time to pick that back up again and get it looked at.

[JayEm]

Maitrimama, I hope they get that infection under control quickly!

Lusciousleaves, I'm sorry you had to let your practice go. I'm glad your bladder issues got better, and I wish you luck with continuing to figure out what's going wrong!

[maitrimama]

Thank you all for your words of encouragement. It is all a bit baffling, despite the presence of white blood cells (and red blood cells & protein & bilirubin) I am not running a fever or have any signs of a UTI. It makes no sense that I am retaining 1/3 of my urine but my bladder feels totally empty, no urgency or leakage. It seems to be pointing back at problems with kidney function. That would explain the marked decrease in urine.

I feel like stomping my feet and being a brat. One thing is for sure...i am in charge and I will decide what tests I will and won't have done!

Thank you sooo much for listening, I am not sure what I would do without you guys!

[JayEm]

I feel like stomping my feet and being a brat. One thing is for sure...i am in charge and I will decide what tests I will and won't have done!

I think that's a good attitude to have!

I hope they figure out what's going on soon. It sounds like it could build up into a serious problem.


As for myself, I had a repeat of my least favorite test today: an EMG. For all the misery it caused, it would be nice if it had done more than rule out things I was already pretty sure weren't going on (carpal tunnel and myasthenia gravis).

But I have a reward tonight, since we're taking my nephews to the fair for their birthdays. I'll put up with being in the stupid wheelchair if it means getting to spend an evening doing something fun!

I hope everyone else gets to do something fun this weekend as well!

[lusciousleaves]

Maitrimama, stomping, screaming, punching pillows, breaking glass, I think we all get to that point at one time or another. Personally, I think the sound of breaking glass is quite therapeutic. And no, I'm not a vandal, and have never done it, but visualizing it can be just as good sometimes. That's a good idea for a ringtone to identify the neuro's office.

JayEm, the longer I'm away from it, the more I want it back. I might just ignore that old PT and do it anyway. It's all I've got. I'm good at it, and the opportunities to do anything else are slim pickings. I just need a little time to get myself healthier, and if I have to take a few days or weeks off here and there, that's just what I'm going to have to do.

Sorry to hear they put you through the old EMG test. That's one I've not had to do, and hope to never have to. You have a great time at the fair with your nephews. It sounds like a blast.

GP tells me it's likely not pancreatitis but says it's worth looking into further, so I'm going for an upper GI with follow through in the near future. It's either stomach or diaphragm. If it comes back, he prescribed an anti-spasmodic for a test run. If it works, it's stomach. If baclofen works, it's diaphragm. We're going to get this one figured out for sure.

[maitrimama]

I hope everyone is looking forward to the weekend. I kind of feel like I am being thrown back into the hamster wheel but I will put it out of my mind until my next appt on Monday.

I saw my GP for the ultrasound results and I have a good sized kidney stone in each kidney, 5mm & 7mm (I have had them before), she confirmed that my bladder is retaining about 1/3 of its' volume and to top it off I have uterine fibroids (which makes no sense at all because I am 7 years postmenapausal with NO history of fibroids). I just don't get it.

So far next week includes Urologist on Monday, another abdominal ultrsound on Tuesday and I have to find a new Gynecologist. I also had more bloodwork and u/a done today. I think getting my hands dirty and gardening tomorrow will be good therapy.

Sweet dreams of ice cream to all.