I have issues that all started around the same time, and have made my life to the point where I can't function, and I can use any help I can get. Short story: concurrent urinary pain issues, and dx of demyelination disorder in my brain causing severe visual problems and other issues.
First symptoms I noticed in mid-Sept were urinary tract in nature; it felt like a UTI, as I've had them (a lot) before. Burning, urgency, frequency, etc. UA showed possible infection (and +blood), so I was given sulfameth antibiotic. Culture on the UA showed nothing, and even after the antibiotic was complete, symptoms persisted. With back pain increasing, and my history of UTIs, kidney infection, and kidney stone (with lithotripsy), I had a CT and also a referral to urology. I was taking Pyridium to help symptoms. I pretty much kept taking it for over a month after that. CT showed a possibility of a small stone, but nothing definite. After a week or so, I started having more symptoms, such as spasms in my urethra & bladder that were excruciating. PCP gave me oxybutynin. The urologist gave me 2 antibiotics, nitrofurantoin and doxycycline. After a few days of taking the 2 new pills, all heck broke loose, and I started noticing symptoms of the 2nd condition.
After starting the 2 antibiotics and taking them for a few days, I started having major issues. The expected side effect of severe heartburn/stomach upset started, but wasn't the big problem. I started noticing cognitive problems (trouble thinking clearly, putting sentences together, communicating, remembering words, etc.) and also started noticing visual problems that started pretty rapidly. It was like a black filter was over my eyes. Everything in my field of vision turned dim, darkened, diminished. I kind of freaked out. I talked to my dad as well as I could, and he called my PCP's office when I woke up completely disoriented. The doc on call, told me to go to the ER. I did, and it was thought I was having some kind of reaction to the new antibiotics. I was given IV Benadryl, and a large amount of IV fluids. I was told to stop taking the antibiotics, and that should make me better.
4-5 days after I stopped taking them, my cognitive and vision problems had not gotten better, and the vision actually started getting worse; my vision was even more dim. I called my PCP again, and on hearing the symptoms I was still having, she sent me back to the ER.
The same ER doc treated me and decided immediately to send me to CT for a brain scan. After it was done, he said, "The CT of your brain was abnormal. You will need MRIs. You will probably be admitted," but didn't say anything else. Not something anyone ever wants to hear. About an hour later, the MRIs were done. Much later, a neurologist and a doc from my PCP's office came into my room. I then had a neuro exam done, and an extensive health history taken. After all of that, I was told that my MRIs had confirmed abnormal spotting and/or inflammation in my brain. The neuro told me that it looked like a "demyelinating disorder," which could be causing my symptoms. I was told that demyelination was what caused Multiple Sclerosis, but I would not be given that dx since this was my 1st "episode" according to what they determined from my health history (though I'd forgotten some things because of the trouble thinking I was having, but I don't think they would have mattered anyway; things like Meniere's disease attacks that I used to get). I was told that I would be admitted, and that I was going to have a spinal tap, and extensive blood work done.
I spent the next 12 days in the hospital. Spinal tap had some slight abnormalities, but nothing that should be causing any of the problems I was having. According to the spinal tap and/or blood work, I didn't have meningitis. Or West Nile. Or syphilis, or anything else that could be causing these issues. Since my urinary symptoms were still bad, I had another CT done, this time with contrast, and the urologist at the hospital said there wasn't a stone, and that more follow-up work would need to be done after I was released from the hospital. I was also told that it was possible that my urinary symptoms were a result of the demyelination.
I was given a 3-day course of IV steroids for vision probs and it didn't help.
When I was in for a few days, I started getting numbness and tingling in my left hand, mainly on the thumb/index finger side of my hand. NOT what a violinist wants to deal with....
As the spinal tap, blood work, and other tests (i.e. an EEG) were normal, I was released from the hospital, with the diagnosis of "Demyelinating Disorder". F/Us were scheduled with my neuro and a new urologist.
The new urologist did urodynamics because of my demyelination dx. Urodynamics did NOT show indication that my urinary symptoms were being caused by anything neurological, and were probably not being caused by my bladder itself, but more urethral type spasms. I was told to stop taking the oxybutynin, and was told the doc was going to hold off on cystoscopy because of the intense pain I had even with the catheter from the urodynamics. He said the next thing we would try for now would be to treat me as if I had a Pelvic Floor Dysfunction. I was scheduled for PT , and given alpha-blocker meds to try to relax all the smooth muscles. I had bad side effect reactions (including rash) from the meds and had to stop taking them, and just wait until PT to see if that would start helping.
I had the first PT appt, and the therapist said due to her exam that it was likely that I did have PFD, so I have a set of exercises to try for now. The new urologist has also prescribed for me a prophylactic prescription for sulfameth, to take until further notice.
The main reason I'm writing this post is because of the demyelination type symptoms I am still having. I still have the numbness in my hand. It seemed to get better for a few days since being home again, but has returned. The neurologist isn't sure it's being caused by the demyelination and said we'd hold off to do testing on it until the next appt, scheduled for 12/12.
The main problems, though, are the visual symptoms. The "black filter" of darkness over my eyes has actually started getting worse over the past few weeks. Times I have noticed it getting worse are if it's either really dark, OR really bright out. Being in florescent lights also make it hard to see. Being tired makes it worse, and so does being stressed. There isn't anything, that seems to make it better. My eyes have also been dry since starting to take the oxybutynin, even though I am no longer taking it.
I have seen a neuro-opthamologist. On exam, he determined that my symptoms were not being caused by anything physical with my eyes, and it was most likely neurological. He did visual field testing, which was abnormal. He repeated the test, and the results were the same. I actually asked him if what I was dealing with was psychosomatic, but he said because of the results of the visual field testing in particular, that no, it wasn't. He did tell me that I should not drive, which I haven't been anyway, but was kind of a sinking feeling to hear. One eye problem that seems to be common with demyelination/MS is optic neuritis, which he didn't think was an issue for me, though it would take an additional MRI of my optic nerve to be completely sure. He said the next steps would be with my neurologist, but we did schedule a followup with neuro-opthamology in 2 months.
With these vision problems, I am pretty much unable to function. My life as I knew it has basically stopped. I cannot drive. I cannot work. I cannot read for very long without getting intense, intense headaches. Being on my computer is hard, too, and it's taken several chunks of time to work on this post until it's been done. Being out of the house, I find I get disoriented very quickly, and as such have even been getting dizzy.
It's also affecting my life as a professional musician. The vision problems have made it very difficult, if not impossible, to read sheet music. The numbness in my left hand has made my violin playing nearly impossible.
The vision problems have scared me. It's been over 2 months now with them, and they have not started getting better. They have even started getting worse. I am scared. I am *so* scared that it's not going to improve. I am so scared of even the possibility of going blind at this point.
If this all wasn't enough? Over the past few days, I've started noticing impairment with my hearing as well. I have had to ask people to repeat themselves. Normal things I could hear clearly, i.e. traffic, birds outside, doors closing, TV, have become a lot fainter. The fact that I can not see very well, and am now having the hearing problems is making me panic even more.
So, that's that. MS could be a possibility but is not a diagnosis. Is there anything else that could look like that on MRIs? I specifically asked if there was bleeding and/or a tumor in my brain, and the neurologist was pretty certain that neither of those was the case. But I've had no answers or timelines or prognoses. With the vision getting worse, this bothers me. What else could be going on? What should I be sure to ask about at my next neurology appointment in a week? Do I need new MRIs? Are there other tests I need to have? Are there any syndromes or disorders I need to ask about and be checked for? What's really going on with me?
I am grateful for any insight and help I can get from people on this board. I understand that most, if not all replies from here will not be from medical personnel, and therefore shouldn't be considered a diagnosis. I will definitely be following up with my physicians, but I really need the insight so I know what to be asking, what to be doing.