[nemsmom]

Hi all, I haven't been on here in almost two years. Sorry to have not been supportive of you all.

I had been doing really well, except the at least once a month U.T.I.s for the last year and a half. Of course my MS symptoms act up every time I have an infection.

Well I had another one, went on antibiotics for five days and the symptoms didn't get any better. I went back to the urgent care yesterday for right flank pain and weakness. They sent me to the ER.

After three hours there they sent me home with no clue what is going on.

They did an ultrasound of my kidneys and bladder, they look fine of course, even though I'm going to the bathroom every 20 minutes and look like I have 2 black eyes. They drew blood for cbc, cmp, and cultures to check for a blood infection (that will take 2-3 days) as well as urine samples.

They don't think it's a blood infection because my blood pressure was high and my pulse low, instead of the other way around.

When they discharged me they said my white blood count was normal for me, between a 3 and a 4, that is not normal for me and because it's "only a little low" they are ignoring it!

They gave me a bag of iv fluids and I refused morphine. I'm not going to take a pain medicine that doesn't relieve the pain but makes me miserable.

The doctor at the ER acted like she didn't know why I even came in.

So now I'm home, in horrible pain, with nothing that helps. They tell me there is nothing wrong with my kidneys and that I don't have an infection. I'm dizzy and weak any time I stand up and in so much pain it's difficult to eat.

I just don't know what to do! I guess there's not really anything to say or do, I just needed to vent.

Thanks for always letting me vent, you guys are awesome!

[NurseNancy]

i hate when drs can't immediately find out what the problem is and their answer is to dismiss the patient.

i have a couple of thoughts.

1. do you have a pcp? i would make an emergency appt with him. let your dr play middle man to direct your diagnostic care.

2. sounds like you need a urology consult. since this sounds like it might be MS related i'd seek the next level of care which would be a urology consult.

be sure to drink enuf H2O. don't get dehydrated. take your temperature at least once a day and make sure you don't develope a fever.

please let us know how you are. don't give up. you're your own best advocate.

oh, PS. maybe if you feel you need another ER visit try another hospital.
since this sounds like it might be something atypical you might want to consider skipping a "clinic" and see your own dr.

[nemsmom]

Originally Posted by NurseNancy

i hate when drs can't immediately find out what the problem is and their answer is to dismiss the patient.

i have a couple of thoughts.

1. do you have a pcp? i would make an emergency appt with him. let your dr play middle man to direct your diagnostic care.

2. sounds like you need a urology consult. since this sounds like it might be MS related i'd seek the next level of care which would be a urology consult.

be sure to drink enuf H2O. don't get dehydrated. take your temperature at least once a day and make sure you don't develope a fever.

please let us know how you are. don't give up. you're your own best advocate.

oh, PS. maybe if you feel you need another ER visit try another hospital.
since this sounds like it might be something atypical you might want to consider skipping a "clinic" and see your own dr.

Okay, a little update.

The urgent care happens to be where my pcp is, I just got back from seeing him.

I have to drink near a gallon of water a day to be able to tolerate the pain.

I do also have about once a day for an hour or so that I'm so cold seven blankets and a hoodie don't get me warm.

I see a urologist on the 14th.

I live in a small town and of the two local hospitals I went to the only one you would ever catch me in. The next closest hospital is 2 hours away.


My doctor says he felt some subcutaneous nodules, he says calcium deposits, where the pain is. But he doesn't understand what is causing the pain.

They gave 1mg of dilaudid tonight to try and break the pain cycle and see if it will help.

They say I should be passed out right now, but it made me wide awake and shaky. It is only helping the pain if I lay perfectly still on my left side.

I called my neurologist today about my wbc, she says it could be the Rebif and she wants it monitored monthly for a while. I couldn't think clearly to ask about this pain. I will call her again tomorrow.

Thank you for your advice, I will keep you posted.

[Kitty]

I can relate to the frequent UTI's. I get them often, too.

I was told it was retention that causes them. I have taken Bactrim to the point I think I have a tolerance to it now.

Mine are different in that I don't have pain. My MS sx are what tells me I have a UTI. They go through the roof when I have one.

Have they checked for kidney stones? The urologist I went to a year or more ago told me I had kidney stones! I've never had any pain or problems with them and forgot I had them.

I hope you're able to find out what's causing your pain. I know how frustrating it is to go to the ER and have them find nothing. ER doctors really know nothing about MS and the last time I went to the ER I felt like I was giving a seminar on MS to them! They were really happy to learn what MS can do to a person and I hope that they at least learned to be a little more accepting of folks who come in with MS related problems.

Please keep us updated on your condition and what the doctors ultimately learn the problem is.

Hope you feel better.

[tkrik]

I hope you are doing better and have talked to your neurologist again today. The pain may actually be bladder spasms. They are not fun. I'm sorry your PCP wasn't much help at this time. Hopefully the urologist will be able to shed some light on what is going on. Have you seen your gyn regarding some of the pain? I do hope you start feeling better soon.

Judy gave great advice!

Like Kelly, I don't feel anything when I have a UTI. Most times, I don't even know I have one and is found incidentally other than MS symptoms being vague and coming and going.

[nemsmom]

Thank you everyone.

The only pain I get with a uti is a burning pain in my back, right at my kidneys.

I'm in the process of trying to switch my neurologist to someone who hopefully understands all of my conditions.

Hopefully I will get some help that way.

I will make sure nobody ever gives me Dilaudid again. It gave me a horrible headache, made me shaky and weak, made my heart pound and gave me horrible insomnia. I got 3 1/2 hours sleep last night. I was balling at 11 because I was so tired and couldn't sleep.

My poor husband. Thank goodness he is an amazing and patient man!

I can't even think straight to remember what I wanted to say because of being so tired and in so much pain.

Thanks again for all of the advice and well wishes. I will keep you posted on my progress with this as much as I can.

[NurseNancy]

i just want to give you a and to say i hope this all gets figured out very soon. i'm sorry you're in so much pain. you're right about the dilaudid, good call on your part.

i agree with the suggestion about checking in with your OB/GYN dr. sometimes things aren't always MS related. and that dr may have a unbiased and different take on your problems.

i wish you well.