Discussions By Condition: I cannot get a diagnosis.

Multiple simultaneous health issues (urinary pain and brain demyelination):need ideas

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: tidesong
  • December 3, 2006
  • 00:10 AM

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.

Thank you.

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7 Replies:

  • Did The Neurologist Put You On Any Medications For The Questionable Ms Diagnosis? Do You Have Other Medical Conditions? Where Are You Going To Be Treated For This?
    BLUES100 4 Replies
    • December 3, 2006
    • 00:19 AM
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  • Hi TideSong, I'm sorry to hear about everything you're going through. With my own health issues, the first diagnosis I got was "possible MS", which has since been ruled out. I am by no means an expert on MS, but from the research I did into it early in my illness, I would say that you sound like a textbook case of MS. One of the frustrating things about trying to get MS diagnosed, however, is that the diagnostic criteria puts a lot of emphasis on the Multiple part. To get an official MS diagnosis, you have to have two or more lesions on your brain and/or spinal cord, and you have to have two or more "episodes" lasting at least 24 hours, and occurring at least a month apart. So far, you've only had the one episode, and until you have another, the doctors won't be able to diagnose you with Multiple Sclerosis. I would suggest that you find a good MS support group online, and ask them some questions. In the months before MS was ruled out for me, I spent quite a bit of time on MS message boards, and I met more than a couple of people with stories similar to yours. In my experience with my other health issues, people who have been through the diagnostic process are often the very best resource for someone who is seeking a diagnosis. As a group, they have been through every imaginable hurdle -- every strange symptom, every poorly informed doctor, every diagnostic frustration -- and they can help you as you navigate those same hurdles. Sometimes just hearing from other people who were stuck with a "demyelinating disorder" diagnosis for years before getting the official MS diagnosis can help. The other thing that I would suggest is that you take some time to grieve. It may sound like a strange thing, but everyone who is diagnosed with a significant illness -- and IMO, people who are diagnosed with a life-long and life-changing disease like MS even more so -- goes through a grieving process. It may be too early for this yet for you, but if months go by without significant improvement, I think eventually you will find a point at which you will have to let go of life as it once was, and accept life as it now is. My own (still undiagnosed) illness has changed my life completely. When I first got sick, I was two weeks away from celebrating my first year wedding anniversary, and I had a new career that was quite promising. As I'm coming to the end of my third year with this, my life is quite different. I have managed to hold on to both my marriage and my career, but I'm not where I thought I would be. I work from home part time, doing as much as my health will allow. I only leave the house about once a week. I often need a cane to walk. Even showering has become quite difficult and exhausting. My husband and I have come to accept the fact that we probably won't ever have children, and have come up with ways to deal with that (for instance, we always fly out to spend the holidays with family, despite the fact that every year I have caught the flu while traveling for the holidays -- and for me, catching a flu means a severe spike in my symptoms, resulting in 4 to 6 months of pain 24/7). My entire life -- the clothes I wear, the food I eat, my career, my hobbies, my social activities, every single detail of every single minute of every single day -- is dictated by my illness. I still get horribly sad about it (I burst into tears when I found out that my younger brother will be the first of my siblings to have children, rather than me, the eldest, even though I've known for a long time that children are not on the horizon for me), and angry and frustrated about it. I scream, I cry, I get depressed. But I've stopped trying to change it, or deny it. I'm still fighting for a diagnosis, and I still do everything I can to keep my illness in check, but I've stopped comparing this life to what my life "should" have been. I've given up some dreams, redefined others, and sought out new things to fill the voids. That's what I mean by going through the grieving process. This life is not what I had thought my life would be, but other than the illness, I am quite happy with my life. I really have nothing to complain about, and now that I have come to terms with being someone who is sick, and will likely always be sick, I am generally a happy person. Anyway, I don't know if any of that is helpful to you or not. It's a personal process, and everybody goes through it differently. And maybe your illness will turn out to be acute rather than chronic, or something that can be completely managed by medication, and you won't need to go through that process. In any case, good luck with your diagnosis, and with finding support groups. I really do think that could be quite helpful for you. ~Ryot
    Anonymous 42789 Replies
    • December 3, 2006
    • 01:34 AM
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  • Did The Neurologist Put You On Any Medications For The Questionable Ms Diagnosis? Do You Have Other Medical Conditions? Where Are You Going To Be Treated For This?Hi Blues100, thank you for posting.The neurologist did not put me on any medications for the possible MS, with the exception of the 3-day course of steroids I had by IV in the hospital.Other medical conditions I have are asthma, and clinical depression/anxiety. I am also overweight, though I've actually lost a good deal of weight the past year. As a teenager, I had many medical things done, such as having my gallbladder removed at the finding of stones, having a ruptured ovarian cyst, and having my appendix removed. I was premature by almost 2 months, so I guess I wanted to get a start on all the bad things! ;)As far as where I'm being treated: right now, I am being treated by physicians in my insurance's health system, UW Health, here in Wisconsin (http://www.uwhealth.org). As part of this health system, I have access to physicians at the University Hospital, which could be of some use. I have not yet looked into being treated elsewhere, but I think that may be coming rather soon. I have the advantage of working for the company that insures me for healthcare, and I've already talked briefly to our Medical Director, who said if the time comes that I need to be seen elsewhere, he would support that. But I have no idea where I should be seen for something like this.Thank you for any insight you have.
    tidesong 2 Replies
    • December 3, 2006
    • 04:34 AM
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  • Hi TideSong, I'm sorry to hear about everything you're going through. With my own health issues, the first diagnosis I got was "possible MS", which has since been ruled out.Hi Ryot,Thank you for writing.Frustrating about the necessary waiting on an MS diagnosis, but at the same time it gives me hope that maybe this is an isolated incident, but I'm guessing that probably not likely *sighs*I think you're probably right, getting into some groups online might help. Do you have suggestions for boards you thought were good that I could start investigating? I think you're right, and it's time for me to start networking.Grieving is definitely a hard thing to do. The frustrating thing right now is that for the first time in years, I have been happy with where my life was before this happened. Especially difficult because I had just started seriously seeing someone new who is wonderful, and I'm worried about how this will affect us. No reason yet to think it would be negative, but it's easy to worry. I guess I'm also terrified to give in and accept that this might be permanent. But then I guess I need to find other musicians with MS (violinists in particular) to hear their advice.Oh, goodness, I'm so sorry that you've had something so serious time itself with such good things in your life. Can I ask what your illness is if not MS, or has it really not yet been found? It sounds like your life has definitely changed drastically, but it's encouraging to hear that someone like you has been able to start making adjustments in order to "live" again.I can certainly understand how sad you must get. I do, too. I break down crying frequently, can't fall asleep for hours, need anti-anxiety meds nightly now, things like that. But the fact that you were able to come to terms with things gives me hope. It seems like there's no way I ever could, but I think everyone in this kind of situation feels that way.Thank you, very much, for your story, and your advice.
    tidesong 2 Replies
    • December 3, 2006
    • 04:50 AM
    • 0
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  • Hi TideSong, It's been a few years and a load of research since I was last on an MS board, so let's see if I can remember which ones I was on, hehe. I spent a fair amount of time on the message boards over at WebMD when I first got ill, and everyone there was always quite helpful and welcoming. I also spent a lot of time at the BrainTalk forums. The BrainTalk forums were probably my favorite, and might be a really great place for you right now, since you know you have something neurological going on, but not definitely MS. Once you find a community that you feel comfortable with, I'm sure you'll be able to start tracking down musicians with MS or other neurological disorders. And if nothing else, people on an MS message board could probably tell you their experiences with things like vision loss -- does it come back eventually, how do they cope, etc. I have always found those sorts of message boards to be hugely comforting. As for me, still no diagnosis yet. I came here hoping someone would recognize my symptoms, and I have found a couple new avenues to explore after talking to people here. My doctors are pretty sure it's autoimmune, and we've ruled out any sort of neurological involvement (at least unless/until I develop a new symptom, in which case all bets are off, heh). For now, we're trying to treat my symptoms and test for anything we can think of. Also, I'm finding patterns in my illness -- things like having a huge flare if I catch a cold or flu -- which have ruled out a couple of illnesses, and which I'm hoping eventually some doctor will look at and go "Oh of course, you have..." But until then, just plugging along. :P And oh, I had forgotten the anxiety. I still have anger and frustration and sadness over this, but most of my anxiety has gone away. But those first few months were really difficult. After my first meeting with my doctor, when she said "possible MS", I sat in my car and cried. It took a month to get MS ruled out (and then we revisited it about a year ago, just to be sure), and I remember how anxious I was throughout all of that. And it didn't really get any better after MS was ruled out. I was getting worse, and we didn't know why, and no one could tell me anything besides "your MRI was clean." And then I started getting better, and was doing pretty well for a few months, and then I got worse again. I'm not sure if its all of the different doctors and possible diagnoses and all the research that has worn me down, or if my anxiety has gone away over the years because I can look back and see patterns now, and I more or less know what will make me worse and when I can expect to feel better. In any case, I seem to have become quite a bit less anxious as time has gone by, hehe. I've really enjoyed talking with you, but I do hope you are able to find an MS or other neurological message board support group. There are people out there who have been through what you're going through. Until I got sick myself, I never would have guessed how helpful just talking to someone who has been through the same thing as I have could be. ~Ryot
    Anonymous 42789 Replies
    • December 3, 2006
    • 08:22 PM
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  • My urologist UK is investigating uro/neur in relation to spina bifida & all am getting midstream tests . Now showing immunity & haematuria and had cardiac arrest last october. I feel the researchers can't help if funded by drug company as suspect doing blind trials . Also had chronic fatigue syndrome fibromyalgia diagnosed . There is also an alternative therapist nearby getting results - Lightning therapy . Haven't tried yet .
    Anonymous 42789 Replies
    • September 14, 2007
    • 07:34 AM
    • 0
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  • Hi Tidesong,How frustrating for you. I am sorry for all you are going through.I have a few questions: Has your B12 level been checked? If low or even low normal (normal 200-1100, low "normal" 200-400, but some still have symptoms btw 400-600)...you neeed treated right away.B12 deficiency has been implicated in some cases of MS. ALSO: I am unsure of this, but I was told by someone that HAS MS that if you have numbness due to a neurological issue it is usually bi-lateral. One-sided might indicate nerve impingement. This woman that has MS is a physial therapist, so understands a little bit about both of these issues (bilateral versus lateral numbness).Also curious....have you had any vaccine's? A vaccine triggered a lot of "MS-like symptoms" for me. I have low B12 and chronic fatigue syndome. Also 4 "t2 weighted punctate lesions in my white matter".I have 2 friends with MS, actually. Both have visual problems. The later friend, is doing a shot to prevent forming more lesions. Another thing: this is very important! If you think you MAY have MS....don't glide so easily into diagnosis before you can obtain a life insurance policy. Especially if you have a family. If you have a DX of MS, you will have difficulty obtaining a life insurance policy.
    Anonymous 42789 Replies
    • September 16, 2007
    • 06:13 AM
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