I'm freaking myself out here and am really scared.
I've been diagnosed with probable MS after two bouts of ON as well as bad headaches and vertigo and some weakness/numbness in my right side and my foot/leg going numb. Have also had many UTIs over the years.
Have some lesions and 3 o bands.
This past weekend, I started having bladder trouble. Didn't really have the urge to go, and had trouble starting. Assumed it was a UTI. Had to go to ER because eventually I coldn't go at all, where they used a catheter to relieve me and then last night I actually woke up to peeing the bed. Never had that problem. I'm on antibiotics but the sample didn't show infection. Waiting on culture.
I saw the NP at my family doctor's office this morning and they made an appt. with a urologist. A call to my neuro's office just left me with the same instructions...see a urologist.
Should I be pushing to see the neuro more? The past week I started up again with a really bad headache extreme fatigue and I've also had an area on my back that is numb and TMI, some tingling, decreased sensation in my genital area. Is this a flare? Could steroids help this? I want to be proactive and do what I can to help this bladder problem clear up and hopefully not return. I'm not on a DMD, but now I'm thinking it might be time.
Just as an update. I did end up being admitted overnight to the hospital because of my urine retention. They did the solumedrol again but only for 3 days as it seems the steroids can make bladder retention even worse but it did improve things fairly quickly. They sent me home after an MRI of my T-spine that showed a new active lesion and teaching me how to self cath.
I had a post void u/s today and follow up with the urologist and things have greatly improved. I don't need to self cath anymore. I had basically stopped the last two days anyways because I wasn't getting much anymore after going.
I'm seeing the neurologist on Thursday for a follow up and he told me to be ready to discuss which DMD I will start. I had been hanging between a CIS and and official diagnosis which I was given after this last MRI in the hospital.
I'm so sorry I didn't see your post last week when you were facing this alone. I would have told you that you need to see a urologist even if the problem is caused by your MS - the uro is the doc who can treat you best, monitor for UTI's, and come up with proactive measures such as ISC to keep your bladder and kidneys happy.
It really is good to get out of the CIS category and get on to a DMD - the latest active lesion in your T-spine is proof enough that your neurologist should have begun treatment with the CIS diagnosis and not wait for clinically definite MS - Argh!! This just makes me angry that neuros delay treatment for so many when even the FDA says to treat CIS. But that is behind us now and you get to move on.
Have you given some thought about which drug sounds doable to you? Remember if the first one doesn't work for you, you can always switch to another. Having TEN approved MS dmd's gives you lots of options.
Good luck with both the urology problems and the neuro visit on Thursday. Feel free to pop back in and kick around your thoughts.
We had briefly discussed Rebif and Tecfidera before I was discharged the other day but he said he'd be reviewing and we'd discuss more tomorrow. I love the idea of pills vs. shots. I think I can handle a few gastro symptoms and flushing better than I can the flu like side effects. Of course I just want whatever will work best for my particular case.
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