bladder problems-where to turn

[Annbanan22]

Diagnosed with MS over the summer, the neurologist said he wouldn't put me on the medication until I started to deteriorate. At that point I had just one 'episode'. Now I am having bladder problems, peeing a lot but still feeling full etc. Should I be going to walk in clinics as I have been for 'urgent' help, the family doctor who may take two weeks to see, or try to see the neurologist (6 month wait)

Not sure if the bladder issues are related to the MS or not and don't know how a Walk in clinic can help me if he doesn't know about the MS.....

Who do you turn to when you need help fast!

[vanvechten]

First, I am impressed with your level of concern for those to whom you respond.  What a two-year period for me.  Started with pacemaker; one year later, strange neuro symptoms that have taken me to 3 research facilities ( I won't get in to these---bad experiences.) Anyway, my local neuro is scratching his head, although seems a lot more concerned now that I have a "neurogenic bladder."  Gynecologist emptied 900 cc that I coudn't feel when he saw enlarged bladder on ultra-sound. Am now "self cathing."  Neuro dr.'s come full circle, from thinking that he could do no more for me to now wanting me to recover from last week's thyroid growth surgery and then go for a 3rd EMG.  Main symptoms: immense fatigue;(Amantadine may be helping); tripping over toes; horrible cramping in right muscle calf; (just this week prescribed Baclofen) right arm weakness; heavy feeling in both legs below knees; bladder problems; difficulty swallowing, although thyroid goiter may have been the cause-too soon to tell.  For a long time, I was convinced I had ALS.  It often takes me awhile to get my words out.  Anyway---does any of this add up to something in your valued opinion? (My sister has MS; has had for 20 years.  Her symptoms are different from mine. I am 52.  Prior to two years ago, was in good health, which is why I amassed nearly 200 sick days so that I can take some much-needed time off now!!! Won't mention depression and effect on once-solid marriage. Thank you.

[Quixotic1]

Hi, and welcome to the forum!  It sounds like you have been left to twist in the wind.  Oh, my, no one should have this diagnosis and have no idea where they can turn for information and help.  This is horrible!  Where do you live that it is 6 months to get into the neurologist?  Are you in the UK?

First, if you are in the US, then the neurologist is way out in left field by keeping you off a Disease Modifying Drug (DMD) "until you deteriorate".  There is substantial evidence that the DMDs work the best the EARLIER that they are started.  No one in the field advises waiting on them once the diagnosis is made.  I realize that in some other countries, they use the meds only for the morse seriously involved, but that is still defeating some of the benefit of the drugs.  It is a decision made usually on economic grounds, because the meds are expensive.

Now, problems with urination are among the most frequent of all the symptoms suffered by people with MS.  This may just be your second episode and it might be the evidence that you are "deteriorating".

What to do.  The first and most important thing that you can do is ensure that you do not have a urinary infection.  Infections can make all of the MS symptoms worse and can cause new relapses (episodes).  For this you can go to Urgent Care and have it checked.

Typically (here) once a neurologist has diagnosed MS, then you can contact them for help and info and would not have the full wait of a new patient.  You should at least be able to call the office and leave a question with the office nurse for a call back, or write up a description of the problem and fax it to the office for a call back answer.

The main problems with urinating in MS are the sense of "urgency" - suddenly having to pee really often and having a strong urge to go, sometimes leaking urine.  The other problem - and a more serious one - is the problem of not being able to empty the bladder completely.  This is what can leave you with the feeling that you still have urine in your bladder.  This is serious because urine left in the bladder is likely to become infected.  Also, if the amount of urine left in the bladder after trying to pee is too much, then the urine can back up toward the kidneys and cause kidney damage.  That would be really serious.

So, the first thing you need to do is rule out a urine infection now.  Simultaneously you need to make an appointment with your family doctor to discuss this with him.  He should also check you for an infection and should refer you to a urologist (perferably a gyne-urologist because they are better with a woman's plumbling).  There are tests that need to be done to make sure you are not retaining urine.  One of the tests is called Urodynamic Testing.

At the same time you need to contact the neurologist about this problem.  He "should" be very concerned about it and want to see you.

Now, if you are in the US, you do not have a neurologist that is practicing Standard of Care for MS.  You need a neuro that will take the MS as seriously as he should and place you on a DMD.  You have now had the required two attacks, if this urinary problem is neurological and not just an infection.

Although we cannot at all substitute for good medical care, we are here almost 24/7 to answer questions and help give you ideas about where to turn.

Would you mind telling us what lead you to a diagnosis of MS?  What happened in your first epsiode/attack?

What did your exam and MRI show?

I hope we can help.  You are welcome to print out this answer and take it to your primary care doctor for guidance if (s)he does not have experience with MS.  I am a physician with MS (not a neurologist) and I try to answer questions here on the forum.

Quix, MD