December 27, 2012 at 4:53 pm #371
Hi all! I am 38 years old and was recently diagnosed with EDS Hypermobility type, as well as POTS/autonomic dysfunction. My question is this–there is some overlapping of symptoms between TC, POTS, and MCAS–but is the presentation of these symptoms different between the potential diagnosis? My MRI is normal, so any TC is occult. But I answered “yes” to almost everything on Dr. Henderson’s Tethered Cord questionnaire. However, some of those could be caused by dysautonomia. The big things I’m dealing with is a progression in urinary symptoms over the last year–started with frequency and urgency, now I just constantly leak small amounts and don’t even realize it as it happens. Urodynamics showed detrusor instability, and the urologist suggested a stim in my back after none of the meds helped. This was prior to my EDS diagnosis, and I didn’t want to do something so drastic when I didn’t even know what was wrong with me yet (all of these other symptoms popped up at the same time). I also have low back pain, cramps in my right leg that have progressed to almost constant fasciculations during flares, pain in my feet, numbness and tingling in feet and hands (nerve studies are normal), and itching for no good reason.
I guess I’m trying to figure out if it’s worth a trip to Dr. Henderson for $600 out of pocket, or if I should try to work on increasing salt and water intake and see if that alleviates anything. I just don’t want any nerve damage to be permanent, if it really is TC. It’s already been 18 months since the symptoms first started.
Thanks for all of your input!December 30, 2012 at 6:01 pm #3276Dr. DianaKeymaster
Hi Blue129, of course it is impossible to diagnose/treat over the internet, right? I will say that I NEVER believe an MRI report unless I actually SEE the images myself (you would not BELIEVE what I have seen called “normal”. yikes.) I hope your doctor has checked CLOSELY for MRI/MRV and bloodwork abnomalities. Tingling and numbness can be low B12 or thick blood. I have a video out (about the MTHFR genetic defect — it also mentions other prothrombotic tesing)it is likely worth watching (not to mention, the bloopers are great. ha.) Is there any chance you have interstitial cystitis? (be SURE to have that ruled out!) If you are considering TC surgery,, please TALK to patients who had had the procedure — at least 1-2 years out, OK? I think a lot of us are prone to poor healing and may have fibrillary defects (more video fodder — Stanford found this out). This makes us more prone to CSF leaks, and by cutting into the cord, we subject ourselves to that possibility. I know of patients who developed chronic leaks after LP’s and it was a living nightmare for them. I am not saying “don’t have the surgery”. I AM recommending that you rule out ALL other possibilities, KNOW what your risks/rewards may be and do your homework by talking to other patients. K? Hang in, my friend. Big hug….January 3, 2013 at 5:36 am #3286
Don’t see where I was looking for a diagnosis…I believe I was trying to “do my homework by talking to other patients”. Nevermind.January 3, 2013 at 9:32 pm #3288BarbaraParticipant
I’ve had slowly progressing bladder troubles, started with hesitancy, and odd smelling urine, the specialist said I had a cystocele and needed an operation to ‘hold my bladder up’ as it had fallen over a bit (EDS & naff collagen probably!). The hesitancy problem eased, although the odd smelling urine didn’t (which, as they said it was because I wasn’t emptying my bladder fully, I expected this to be resolved – but no). I personally think there is something irregular that we are passing out within our urine, that would be a ‘test positive’ for our condition – if only I (or someone else) could work out what it was!!
Anyway, following this op, I seemed fairly ok for a while but then I had a hospital test that applied traction to my cervical spine (and consequently, the spinal cord) and new symptoms started immediately. (Incidentally they said I had occult tethered cord, at the time). I lost the feeling of a full bladder, so then had to ‘manage’ the emptying of my bladder based on what quantities I’d had to drink and how long since. If I forgot, I had leakages, just by leaning forwards or altering position – and the worse thing, I couldn’t feel that I was passing any urine when this happened!
Intermittently, I got the feeling of a full bladder back and this led to ‘urgency’, if I hadn’t been to the loo sufficient enough. To cap it all, I could no longer empty my bladder completely, in the normal way just by relaxing, this only emptied about a third of it. So I have to then press on my lower abdomen with my hands, this releases another third. I then have to strain and tense up my abdomen (to apply internal pressure) and this just about empties it.
I had the uro-dynamics test that showed just 50mls remained and they said they would show me how to self-catheterise but I declined, as I felt I was managing ok as I was. I was told there was a weakness in the detrussor muscle.
The point of this lengthy post is that, with good management, you can avoid those embarrassing leaks, you just have to make sure you empty your bladder more regularly than you normally would, so that there is no build up of pressure within the bladder (that maybe you can’t feel). That way, you are still relying on your own body (in a fashion) to carry out the full function.
(UK)January 4, 2013 at 8:31 pm #3298
We have two different causes of bladder dysfunction so unfortunately what worked for you will not work for me, but I do really appreciate you taking the time to answer my question!January 5, 2013 at 4:41 pm #3302Dr. DianaKeymaster
Oh, Blue, I just thought of something — there is a “secret” FB group for patients of Dr. Henderson, but I believe you have to be a patient to join. If you think you “qualify” I could see if I can find the contact person for you…
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