It was a little late, but a couple of days ago, it hit me: January 1st was the 5th anniversary since I've lit up or smoked a cigarette! Of course, I am fast approaching the 1 year anniversary since I tested positive for a UTI and I still have it. Doesn't matter how many antibiotics I take, it just ain't going away.
Anyway, as far as MS is concerned, the focus is no longer on my brain or spine, it is all about my bladder! From pisaries to 12 Botox injections to deal with an "MS bladder".
I'd hoped a group that meets monthly regarding MS, I would be able to talk about it.
Nope.
That group stopped being a MS group in 2020, except to push find-raising for MS research. It became instead a COVID group where people can find out how many COVID cases there are currently, how many hospital beds are being taken up by COVID patients, how many COVID deaths there have been since last month. Then the group director moves on to the latest in the COVID chemical injections. And NO adverse comments or anecdotes are allowed. Nor are any negative comments regarding the Healthcare system's obsession with COVID 19 pushes all other health issues--including MS--into the shadows because you can't DIE from anything other than COVID 19, so is the director's attitude.
However, in regard to the University Hospital's obsession with COVIDhas, in my opinion, emphasized the unspoken sense that if you don't arrive by ambulance or helicopter, or don't have COVID 19 DO NOT COME!
Since I lost an excellent neurologist, replaced by a new neurologist who is too busy to see patients, but dumps them onto students or a rotating list of nurse practioners, I'm more than happy to stay away, and find a new neurologist.
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CrazyCatWom
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Congratulations! I'm still smoking, but if the rumors are true that cartons have gone up $4 this week I may have to finally quit.
And good luck finding a new neuro. I'm in the same boat. Mine was absolutely wonderful but had to leave due to a serious family health issue. The only neuro left at the flourishing practice is the one named on the letterhead, and I think he's a ghost. The last PA assigned to me ridiculed everything my doctor had put in my notes and then informed me that my only issue is that I "must be" vitamin deficient in spite of my bloodwork showing otherwise.
Good morning, Crazy Cat Woman. I was thinking about you just a few days ago and wondering how you were. UTI's for a year, 12 Botox shots in your bladder and you didn't light up a cigarette????? Girl, you are a SAINT! Of course, I'm in my second week of no smoking, and it would take very little for me to grab a cigarette out of a stranger's hand and take a big, long drag! I am so sorry that you are having to go through all of this with no resolution. I lost my good neurologist in October, and had my first appointment with my new neurologist, who is a MS neurologist, in December. After an hour and a half of her focusing on my involuntary neck and shoulder movements ( she was so excited, because she insisted that I most likely had Wilson's Syndrome, which is very rare). I told her no, it happened because of the MS, about the time the RRMS decided it was going to be SPMS. Her response was " forget the MS. We will just continue whatever meds your prior Dr. had you on. Your disease is so advanced, there is NOTHING I CAN DO FOR YOU!"
I don't have a MS bladder, but I can listen if you need to vent. I do have a MS/Crohn's bowel which provides excitement, but only when I eat, food! Take care of yourself, my friend. Without a Dr. who listens or helps, you are the best expert around! Linda
Bravo on the quitting smokin! It's hard, I know. It took me several tries. Your words "a new neurologist who is too busy to see patients, but dumps them onto students or a rotating list of nurse practioners" hit home here. Why, why, why is it so difficult to find a neuro whose interaction with a patient shows at least minimal interest, understanding, and empathy?
Hello CrazyCatWoman! I’ve been using D-Mannose powder(Now organic) brand. I take 1-1/2 teaspoons mixed with 4 ounces of water first thing in the morning after I go to the bathroom. I do this as a preventive daily. If I feel like a UTI is coming on, I do it again in the afternoon with an empty bladder. It’s important to wait ~45 minutes before drinking anything. You can use this as needed. I recommend doing some research on D-Mannose to find out if you think this would work for you.
Thank you! I take d-mannose, one capsule every morning, but I hadn't thought of taking additional if my urine is dark with a strong odor. I tend not to feel any burn until the UT's gotten really bad.
The research I’ve seen suggests a total of 2 grams daily for prevention and 3 grams daily for active infections. I hope you get relief of your UTIs. They are miserable!
Congratulations on quitting smoking you really need a reason to quit. 30 some years ago the doctor told my wife she needed to quit she told me if she had to quit so did I. I threw away my cigarettes and have had only 2 since
Congrats on your non smoking anniversary. Overall good health decision.
Did botox injections contribute to UTI.
I go about 30 to 40 x a day. Took myrtrbig & it put me in medicare donut hole effective time for about 6 hrs so quit except for long public appearances.Along with other inconveniences just living with it.
I think neurology is not that popular a specialty, thus not that many graduates in it
. Neurology, gastroenterology , endocrinology, opthalmology, not my favorite specialties either. Best of luck in finding that exceptional specialist.
I’m right there with you with never ending UTI’s. I see my urologist in 2 weeks. I was going to ask about Botox but it seems like it’s just another dream for a cure. I’m lucky I can have my specimens dropped off for testing and I get the results electronically.
first congrats on dumping the ciggies! that group sounds all sorts of wrong. who ever heard of a 'support' group where you can only praise?? glad you're getting a new neuro. ms is a specialist subject, not for students.🤬
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Hi everyone hope all had great holidays!!n happy new year!
Blessings in the new year!
New Years Resolutions?
New Here, but 30-ish Years with MS 
