Hiiiš¤, Iād really like if I could have some opinions and advice on my symptoms Iāve been having.
I have been having bladder numbness for about 8 months now. Iāve had MRIās of my brain and spinal cord for Neurological Disorders and Cauda Equina Syndrome in my lower spine. Everything has came back negative but I am still suffering with no sensation of bladder fullness no matter how much I drink. I was then sent to a Neurologist and because my brain MRI was clear he could not say it was connected to anything neurological.
I have trouble peeing for a long amount of time, usually I can only get a small amount out every time using the bathroom. Usually, I have hesitation before I go to the toilet too. Also, I am dealing with genital numbness inside. Itās all making me very insecure. I have trouble emptying bowls too. It seems like from the waist down I have numbness and malfunction.
I suffer from muscle spasms daily round my body too but it isnāt the most worrying symptom for me and hyper sensitive fingers with tingles in the tips of both hands. Which I can only think is my nerves. It seems different sensation nerves are being effected? Is MS the only common cause for my age?
I was wondering if thereās any chance anyone would know what would cause this at 19 years old? It seems usually woman older get these disorders. Iām very worried for my health, it would be great to know if a neurological disorder is the only case and what ones it could be connected to for a young girl? It would really help to know what type of nerve damage could be causing this at 19.
Thank you if youāve read this far!!
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Hi Tayaswinnss
Not sure what, other than neurological damage, would be causing bladder numbness - I know that mine is due to lesions in my spine. It would be worth getting a full head and spinal mri done (again) as spinal lesions can be notoriously difficult to spot. Has anyone suggested having a lumbar puncture done to check for oligoclonal banding - basically an indication of inflammation of the brain/spinal cord.
Other than this, has your GP ruled out B12 deficiency or thyroid issues; and have you been checked out by Rheumatology re. Lupus etc.
Thereās a long list of conditions that have similar symptoms and most of the time all the others have to be ruled out first before reaching a diagnosis.
Hope you get some answers soon.
Hi,
Thank you so much for replying! Since seeing a neurologist he dismissed me straight away really because my brain MRI was clear and said it couldnāt be neurological which I do not agree with and wish he had tested me for other disorders.
Iāve now gone to a urologist privately because that is the next step he told me to take but id rather be seen by a second neurologist and be tested further.
If you donāt mind me asking what are your spine lesions from? I have wondered if I have something going on with my spine as when my symptoms started I had quite a lot of aches and pain in my lower back. Is there any chance an infection could have caused this in the spine? Not sure if that is a neurological cause.
Thank you!
Hi,
My spinal lesions are from MS; I have 3 lesions in my brain which have not altered one bit since they were first spotted on an MRI in 2013/14, and my neurologist was adamant were nothing to do with the symptoms I have had since 2013, the spinal lesions were first spotted in 2022 after I developed issues with bladder numbness/urine retention/hesitancy in urinating etc. I saw a urologist to rule out any cause other than neurological - and they insisted that Neurology take another look at things, full spinal MRI and 4 new lesions later I was diagnosed with MS.
Its a good idea to see urology regardless, they may be able to say - this is caused by x, or they may refer you back to neurology. They can also help you with the numb bladder/hesitancy/retention issues - TMI, I now self catheterise 2 - 3 times a day to make sure my bladder is emptied properly, nowhere near as bad as it sounds at first, you might like me see the funny side of it, and way better than struggling and taking forever to have a pee.
Hii, yes I am still going to go through with my urology and hope they can help. Iād love if I was provided a catheter even though it does scare me quite a bit with thinking of doing it myself but knowing I have an empty bladder would make me feel much more comfortable thinking my kidneys can stay healthy. Even though my MRI had came back clear which were done the first month of my symptoms, could there be a chance MS hasnāt been obvious on my scans yet? Sorry for asking so much, I just see MS is very common for young people too and donāt really find a lot else with other disorders. Thank you xx
Hi, Iām told that MS lesions, particularly spinal lesions, can be particularly difficult to spot in their early stages of development, they donāt have to be huge to cause issues - it all depends on the exact position they develop in.
Intermittent Self Catheterisation (ISC) is decidedly weird to begin with; the urology team will demonstrate/explain fully and make sure you know how to and are able to do it, and it does get easier.
I am sorry that you have these worryingly symptoms deal with and that it is taking time to find out what ails. Sometimes gentle persistence and not giving up is what a person needs to get answers. I hope that you make progress soon.
Thank you so much! Yes it is all strange but will keep trying to find answers x
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Hi, okay thank you so much for answering all my questions and giving me some advice! Itās good to know that MS can take sometime to show up and it must be the spine that does affect bladder control and feeling. I will push for more tests on this after urology.