Last reply 5 days ago
Not doing good. :(

I ended up in the ER this past Monday with what I was convinced was a bladder infection, but according to the doctors, it was a bacterial infection that was attacking my bladder. Went to the doctor yesterday, he diagnosed me with a UTI and possible kidney infection. I’m in serious pain and on 2 antibiotics and generic AZO for pain. Yesterday I peed 14 times between 9:30pm Tuesday night and 6pm yesterday evening! It was nerve-wracking! I’m being referred to a urologist.

My doctor told me to use a wheelchair whenever I go anywhere that involves a lot of walking, because excessive walking can damage my legs. I told him that I had gone to the mall with my 3 teenage daughters last Saturday do Homecoming dress and shoes shopping, but started getting dizzy and very tired from walking around with my crutches, plus my daughters had to hold me when we were on the escalators because I couldn’t stand up on my own. It was the first time I’d gone to the mall since getting sick and I was apparently unprepared. But the doctor said to use a wheelchair next time.

He doesn’t want to order anymore MS tests on me since I finally see my neurologist next Monday. He doesn’t want to order one thing, only to have the neurologist want something different. Makes sense.

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itsmewithms
6 days ago

I don’t see where in the world you are but if in the US the ADA requires accessibility so search out the elevator if you can…unless they consider the escalator their option. It sounds like a lot of MS people have issues with them. I didn’t until more recently and thought it was just me.

My Neuro wants me in ASAP if I have new issues for more than 24 hrs but it looks like you are still undiagnosed on your profile. I’m popped into an MRI pretty quickly for them to check for lesions and load me with steroids if they see anything active.

Bladder issues also occur with MS so it may all tie together. My bladder issues are more with urgency and hesitancy. Any type of infection or immune challenge can also trigger MS to that is all info to be aware of and bring with you to the neuro.

Even though my Neuro is very busy and can’t always be reached he has an assistant and/or number with a Dr available 24×7. See what kind of support or advice you can get even with an appt on Monday…


arica_therrien
5 days ago

@itsmewithms

I live in the US, in Michigan. You made a good point about the ADA law. The mall does not have elevators, and there are only 2 stores with escalators because they have 2 levels. The rest are one-level stores. But getting on those escalators scared the living hell out of me.

No I still haven’t been officially diagnosed yet, which is why I’m seeing a neurologist. The fact my MRI was done without contrast has raised some eyebrows. I’m hoping my neurologist will have some ideas of where to go from here.

The antibiotic I’m on for my bladder infection is attacking my anxiety and making me feel like I’m about to go crazy and lose my mind. I absolutely can’t wait to get rid of this sh**! I feel like death warmed over. I’m so tempted to throw away my antibiotics and just use CBD oil.


itsmewithms
5 days ago

There are so many different options for antibiotics I would ask them for another perhaps if this one does not work well for you. From comments on this site it is clear that health challenges kick off MS issues so they are important to resolve.

I don’t understand the MRI without contrast. They typically run the MRIs once and then put in contrast and run them again. Not sure where you are being seen but ask a lot of checking questions to confirm they have the strength in MS that you need.


arica_therrien
5 days ago

@itsmewithms

I’m thinking of calling my doctor and asking for a different infection med. Idk how much more of this I can bare. I’m trying to hold on until I’m done with the meds, but they make me feel like I’m gonna barf.

That’s what I was expecting with my MRI. Part of it done with contrast, and part without. They never did any of it with. I’m gonna talk to my neurologist about it all on Monday. I’ve kept a journal of symptoms and flares since June, so I’m going to let him compare. I’m praying he can suggest something more, or give me a diagnosis.


nellie10
5 days ago

I’ve had PPMS for about 40 years. It stopped progressing about 20 years ago but by then I was in a wheelchair because I could not walk. The PPMS only causes problems with my legs and my bladder. I have a suprapubic catheter fitted so to urinate I just turn a tap. I can go out with a leg bag on. The only disadvantage to using a catheter it is painful when it is changed.


itsmewithms
5 days ago

Being that it is Friday you will want to push a call to your Dr today. Weekend coverage isn’t the best sometimes and they may not be authorized or knowledgeable enough to change your antibiotics. Many times the same one has to be given over the full cycle in order to be effective so I don’t know how many days in you are and have yet to go but consider if you start over on something else it could extend the antibiotic timeline. I’d get a call in to the Doc today.

I assume you already have the handicap tag you can hang in whatever vehicle you are in? When I was having balance issues in June my Neuro signed off on a temporary tag for me. It really helps when I have to park a distance from the door or know when I will be walking a lot. Knowing my car is right by the door gives me confidence to complete all my errands. I also look for a place to sit down whenever I can and try to limit my “bursts” of mobility to 15 minute at a time or some amount I think I can handle.

For example I went to the Minnesota Renaissance Festival several times this fall. This is something I love doing with my daughter but is held in a big area with 18 different stages with dirt/mud paths and very uneven terrain. I used the hangtag to park so that was good and then got our entrance tags, greeted the king/queen and royalty inside the gate (we’ve been going for years so are recognized by the court) and then made my way to the first stage with a breakfast snack. I watched the shows at that stage for at least an hour. After that break I knew I could make it to the next stage in 15 minutes and be there sitting for an hour or two.

In the past I would have flitted between stages and covered the entire grounds in one day. Did it many years with my little daughter in tow. Now I have broken the grounds into 3 segments and manage to see all the shows but organize them into three different weekends to minimize my walking requirements. Others try to see how many steps they get in to maximize their steps…I acknowledge I only have so many steps a day so organize quite the opposite 😉 but still try to push my personal envelope.

Every state has their own form and requirements and your Dr has to sign-off. My Neuro did for me-
https://www.michigan.gov/sos/0,4670,7-127-1585_49898—,00.html


arica_therrien
5 days ago

@nellie10

Ouch! I’ve had catheters before and yes, they hurt A LOT! I can’t wait to see my neurologist on Monday. I’m really hoping he can give me answers! I’m planning to buy some adult undergarments (Depends) which will give me more protection than just pads.

I just called my PCP and left a message for his nurse to ask him about me using a wheelchair when I go somewhere, if he wants to prescribe one or just have me borrow one when I’m out somewhere. The receptionist said “He’ll probably prescribe one.” I’m just like “😒” thrills. Even with my insurance, a new one will be expensive because I’ll still be left with a 20% copay, but maybe a new one will fit me better than buying a used one or borrowing one from somewhere. I’ve been in big wheelchairs where I could fit 2 of me in! Lol


arica_therrien
5 days ago

@itsmewithms

You’re right in that if I start a new antibiotic it will just prolong the recovery time. I’ll stick it out until I’m done. I’m on my 3rd day’s dose. I feel a little better, still a little pain and going a lot, but better than before, so I can do this.

Yes I have a handicap placard for my car and it definitely helps me get good parking spots when I go somewhere. Its a temporary one that my PCP signed off on, expires in February. But I’ll ask my neurologist if he wants me to switch to a permanent one. I try to limit my walking, too, but the mall didn’t have many places to sit down, so I had no choice but to walk a ways before I could. It’s changed a lot over the years and not exactly in the next way. Many stores closed, a few of the restaurants in the food court are gone.


itsmewithms
5 days ago

Don’t be afraid to ask for a chair or a place to sit. They want your business they will accommodate you most likely.

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