Posted by Kadi on May 02, 1999 at 12:25:46
Hoping you can point me in the right direction. I am about ready to go out of my mind trying to figure out what is causing all of these medical problems.
Im a 33 yo female, have a 6 yr old born c-section. Never had any surgery or injury that could cause my problems. About 9 months ago I started getting chronic UTI's..Urologist found that I was retaining urine so I started self cathing. The last 9 months have progressed rapidly. Had a supra pubic catheter put in about 6 months ago because self cathing was hurting, still had lots of UTI's and also would all of a sudden not be able to drain myself. I continued with the infections and my supra pubic would stop working once in a while, so I was still always at the ER. I asked them to take it out because I still had a lot of right back kidney pain, bladder and abdomen pain, still had infections, and the SP cath hurt..always getting puuled on and the spasms were terrible.
Had all the MRI's and went through Mayo CLinic 5 months ago. They did a full MS workup, all the neurology and urology tests. Everything was negative and they said they dont think I have MS. Urology pressure tests showed that I have no feeling until 1100CC full. For a month or so before I went to Mayo I had some other symptoms/problems..hot pains shooting up the back of neck and head, numbness/tingling in left thigh, unbalanced feeling, major headaches and migraines, terrible fatigue, would fall from time to time, anxiety, etc. This had all mainly cleared up by the time I went to Mayo. Maybe it was all my imagination?
So, I felt fine for the last 6 or 7 months except for the bladder not working, and the pain associated with it, and the UTIs.
About a month ago I started having problems controlling my bowels. Not an everyday occurance, but once or twice a week. Always felt like I had to go, even when empty. No changes in stool, diarrhea, or constipation..always formed.
Besides the bladder and bowels problems, I have other problems again. Hot shooting pains in neck and back, same left thigh tingling, numbness from time to time in left leg, horrible fatigue, headaches/migraines, and so on. This has been going on for about 2 weeks, and the anxiety is terrible.
Im confused and scared about whats going on. Sometimes I wonder if Im imagining all of this. My doctor reassures me that Im not. He set me up for more MRIs and an appointment with a GI Doctor. Cant get in to do any of these for almost a month.
Here are my question:
1. Can the bowel problem be related to the bladder problems?
2. Does this sound like MS symptoms?
3. Is it possible to have all these extra problems come back like this..fatigue,tingling, numbness, headaches, etc?
4. Is there a possiblity that this could be something minor and not a neurological disorder?
5. If my MRIs are negative again, any advise on where to turn?
6. Any idea on treatment to relieve some of these problems? Im not working and have no energy. I need to do something.
I apologize for this being so long. Thank you in advance for your time and input, your forum is greatly appreciated.
Posted by CCF Neuro MD msf on May 06, 1999 at 17:27:22
I will do my best to answer all your questions:
1 - Yes, the bowel problem can have the same cause as the bladder problem (although the opposite is also possible...).
2 - All the symptoms that you describe can be seen in MS, but none of them is specific of MS. Bladder problems in MS often consist of urinary urgency / frequency / incontinence, due to an "hyperactive" bladder which contracts even with a small quantity of urine (50cc, 100cc). Urinary retention is also seen in MS, but a very "hypoactive" bladder like yours (no feeling before 1100cc) would be a little bit unusual for MS. To summarize, your symptoms could be consistent with MS, but are not typical of MS either.
3 - The fact that you have intermittent or fluctuating symptoms (besides the bladder problem) does not necessarily mean that you have MS. Many symptoms have a tendency to vary over time.
4 - It is always necessary to look for a local problem, especially when newurological tests are negative. For example, a lack of reactivity of the bladder can result from accidental "over-stretching" of the bladder muscle. Then the bladder will not be able to empty itself correctly for several weeks. However, this problem resolves after a few weeks if the bladder is emptied regularly by other means (supra-pubic catheter, self-catheterization), which is what you did. I would encourage you to pursue investigations regarding the bowel problem, as it may be linked to the bladder problem.
5 - This is a difficult question. I understand that you have had many tests already, probably including a spinal tap, evoked potentials, and EMGs. When all tests come back negative, and a local cause is ruled out, we usually monitor the symptoms, and repeat tests as necessary.
6 - Yes, some symptoms can be treated even if no cause is found. Regarding your bladder, we have not found anything else that what you have done (self-cathing or suprapubic catheter) when there is a significant urinary retention. The treatment of your bowel problem will depend upon the results of examination and tests. Fatigue can be treated for itself, for example with Amantadine or Cylert. Burning pain and tingling can also be relieved, for example with Neurontin, Amitriptyline, or Tegretol. I would encourage you to discuss the management of your symptoms with your doctor. Treating symptoms is a step-by-step process, and it can take time to find out the medication and the dose that works for you.
I hope these answers help.
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