Back to the neuro thursday 8/12 and scared

[earnellzwifey]

My last visit was with the nurse practitioner and all they done was get an updated MRI which showed no changes. I will be seeing the nurse practitioner and neuro this visit and hope to get a few more answers.

I have really gone down hill in the last few months and i am scared of what is going on since my MRI is unchanged. I have not been told what type of MS I have and I am afraid that they will tell me it is primary progressive and there is no treatment for me.

I need a cane to walk since my left side is so weak and the numbness in my hands make daily task a real fight. The vision in my left eye has dropped from 20/25 to 20/40 and my color vision is messed up. I have taken 2 weeks oral prednisone and 4 days IVSM with no lasting results.

I have been having a lot of pain in my spine and think something is going on there but have not had a MRI to check for lesions or any damage. I just turned 32 and my grandmother gets around better than me. Is just sitting around and waiting to get worse all I have to look forward to.

I also have an appt with the urologist. hopefully this time with a dx of MS he will take me seriously about all my UTI's. Last time I saw him he told me it was not chronic UTI's but unclean sex practices. I have been with the same man, my husband, for the past 5 years and I've never had a STD. My infections have attacked my kidneys 4 times in the past year and I am worried that one of these times it will cause permanent damage.

Sorry to go on and on but I am tired of the medical community telling me I am to young to have all these problems. When did diseases start having a age requirement?

[Justsayyes]

Hope this isn't too much information...warning!

I do hope you have a good appointment today, and that the neuro has some plan of action to help you.

As for the urologist......unclean sex practices? Well, I just want to say that when I was young I'd get UTI's chronically, and intercourse definitely triggered them. I learned to get into the bathroom to pee immediately after, and I'd also jump into the shower. I was terrified of more UTI's. I also went off the pill, and we did use condoms (this was decades ago.....) For whatever reason these measures helped, I stopped having UTI's altogether.

I have to say we weren't doing anything "unclean" whatever that doc is implying....he sounds sort of uptight to me, we were just engaging in your average intercourse.

Some members here on on low dose daily antibiotics to ward off chronic UTI's.

I hope you get some kind of help from your docs....otherwise I might want a second opinion.

[SNOOPY]

I learned to get into the bathroom to pee immediately after

Yep, same here. Also, make sure your husband washes his hands before. Even with these precautions UTIs still happen. My PCP, at one time, suggested an antibiotic to use after intercourse...I decided not to.

earnellzwifey, I have had UTIs starting at the age of 4. At that time the only diagnosis I was given was retention with no known explination. I lived on medications for UTIs for all of my childhood as well as cathing at the Urologist office and at the hospital. I have had intermintent problems even in adulthood.

I will always wonder if the early UTIs and the difficulties were my first experience with MS...I will never know.

If you are not comfortable with your current Urologist then please consider finding a different one.

A Urologist can be helpful determining if your Urinary Tract problems are Neurological. Being comfortable with the Urologist can be helpful, for you, when going through some of the testing, if testing is needed.

[earnellzwifey]

one step closer

Well my fears were totally unfounded both drs were really nice to me and they both listened for a change. The urologist dx'ed me with neurogenic bladder and chronic cystits. he perscribed low dose antibiotic to take at bedtime and one after sex as well as vesicare for my frequent bathroom trips.

the neuro is finally doing the cervical and spinal MRI
i am also scheduled for a lp to recheck my fluid for o-bands and a lot of other stuff. he still did not give me a 100% confirmation on MS but did say that my neurological exam shows that I have some form of spinal damage and will know more after all the testing.

[KoKo]

Hello Earnellzwifey

That's wonderful to hear - both doctors were nice and they listened to you! Good for you!

You're getting a cervical/spinal MRI and another LP - sounds like you're on the way to getting some answers.

Hopefully your bladder issues will clear up too.

Thanks for the update.

Take care,
KoKo