My MS like symptoms (still haven't mustered the courage to "officially" get diagnosed) have become worse. Mostly my bladder issues. I have over active bladder combined with chronic retention, so basically, I have to pee a lot, and have crazy big bladder spasms, so much so that if I don't get to a restroom quickly, I will be a 31 year old who pees her pants, BUT, and here is the kicker, when I do try to go to the restroom, I can't. I have to push on my bladder which has a fancy french name "The Credé Maneuver" and also have to push like I am trying to drop a two-sie.
It's funny how envious you become of people who can just pee...ahh the little things in life.
I had a test called "urodynamics" done. Not a fun test. I hope you never have to have it done but if you found my blog you might already be scheduled to do it. It is a very awkward and humbling experience.
My urologist had recommended urodynamics about 9 months ago, and I scheduled it, but after some googling, I flaked out and didn't go through with it. As my symptoms worsened, I visited my urologist again, and she again recommended the urodynamics. I met with the appointment setter, assuming it would be weeks if not months from now, but nope, she moved things around my doctor's schedule, and fit me in then next morning. Oh yay (sarcasm). Which gave me less time to flake out this time.
Why was I so hesitant to do this exam you may ask, well two reasons: First, if the test showed what we all thought it would, then more signs would point to MS; Second, when I googled it the first time 9 months earlier, it mentioned some catheters being placed in some unusual places (uh, your bum, yeah a catheter in your bum).
My doctor neglected to tell me that on purpose. So this time around, I verified this information, you know, not everything you read online is true so I was hoping this information was not accurate, she reluctantly confirmed this not so pleasant aspect of the testing. She told me she doesn't like to tell patients that because they never show for their testing...I couldn't imagine why. But she said it would just be her, and a female nurse and they have done it countless times and not to worry. So I went home and worried.
There is nothing special you need to do prior to the urodynamics testing, except show up with a semi full bladder. Well I failed that part miserably. I tried, I really did, but as I was driving to my urologists office and the urge to go was getting stronger, so I had to pull over to a CVS and use the restroom.
That's the thing, how exactly can you expect someone with over active bladder to really show up for this testing with a full bladder?Once at my urologists office, they had me down a ton of water to refill the tank so to speak and take a pill, which at the time I thought was an antibiotic (since I was being catheterized) but I later concluded that it was a Valium (which explains some of my awkward chattiness) . Then they took me into this room, with this crazy looking chair in it that was connected to a large computer. The seat of the chair has a nice semi-circle cut out of it with a funnel and a bucket underneath it, and some stirrups, yay, stirrups, I love those things (more sarcasm).
*Side Note: the picture of the chair above is one I found online, I was going to take a picture of mine with my phone, but thought that might seem a little odd if someone walked in on me, not really the kind of photo you see in a family photo album you know. And on another side note, I swear the seating area of my chair was much smaller than the one in the photo, because I felt like I was going to fall in that hole, and I don't exactly have a big butt.
The MALE nurse handed me the annoying large rectangular paper napkin and told me to undress from the waist down and cover up with the napkin and sit on the crazy chair.
I was fully expecting a female nurse to return, I just assumed the male nurse was escorting me to the room, nope, in walks the same male nurse (accompanied by a female nurse). So I am sitting on this half chair with a glorified napkin on, feeling very uncomfortable, when the male nurse sits in front of me and steps on the hydraulics petal so that the terrible half chair starts rising to eye level, oh joy.
"Legs in the stirrups" how women love hearing those four words. And he proceeds to insert a pediatric sized catheter in my bladder, no biggy, I have had enough catheters in the past few months with trying to figure out this bladder thing plus this one was pretty tiny. But then came the dreaded rectal catheter (not what you think it's for, it is actually a bulb with electrodes in it used to measure spasms, I totally thought it was used for the same reason a bladder catheter is used, to empty). He proceeds to tell me, it's no big deal, it's only the width of a pinky, uh, not sure whose pinky, certainly not my pinky, perhaps Andre the Giant's pinky. Then he starts linking up all of these electrodes to me. Meanwhile I am having awkward conversations with him and the female nurse trying to pretend I am not face to crotch with the guy who just put a catheter in my bum.
Finally my urologist comes in and they start the testing. They fill your bladder with sterile water and start taking readings of my spasms, at first it isn't so bad, they ask me about the sensations I am having and when I feel like I have to urinate. They continue to fill my bladder and ask me to cough a few times to see if I leak. Then as more fluid enters my bladder my spasms start going nuts and I am "peeing" all over the half chair even with my little catheter in place (that's a fun feeling) and my urologist and the nurse exclaim "wow those are bad," yeah no duh, why do you think I am here? Up until this point I think they thought I was over exaggerating my symptoms.
So they clean me up and take out and off everything they put all over and in me.
The conclusion, I do have over active bladder, and some type of nerve damage that isn't allowing my brain to get the correct signals to my bladder. Whether that damage is from MS or some type of localized nerve damage most likely caused during the birth of my son three years ago (since that is when all of my symptoms started) is not determinable from this testing.
They prescribed a very mild medication for my over active bladder which only slightly helps, but they couldn't give me anything stronger since I already have issues with retention, anything stronger could possibly make it impossible for my to pee even with the pushing (which isn't good to do either might I add, because all of the pushing is now causing some prolapse issues... damned if you do and damned if you don't).
So my next step is to actually see a neurologist and get some MRI's to see where the damage is and get a better understanding of what is causing it.
That all being said, if I do "officially" have MS, I still will choose not to take the MS medications. Instead I have decided to try the Wahls Protocol Diet. I have already started reading this book, and it is amazing, for anyone suffering with any autoimmune issues, this book is a must read. And really even if you just want to eat an optimal diet, full of amazing health benefits, you should read this book.
Dr. Wahls has conquered her MS symptoms through diet and lifestyle changes. And she doesn't just base her information on her experience, she has actually started clinical trials of her diet. I was going to join and be a part of them, but I couldn't afford the plane tickets back and forth to go, and the time away from my then 2 year old and 9 year old seemed unbearable.
Another option I am considering for my bladder issues is an implant called an Interstim. It is basically a pacemaker for your bladder that they put in your hip/butt with wires that stimulate your sacral nerves (the nerves that control bladder and bowel function). The devise sends pulses to your nerves so you can have somewhat normal bladder function.
It all depends on what my neurologist says after I have some MRI's done, and if the Wahls Diet improves my bladder functions within a 6 month period I am giving myself. If it doesn't work, I will probably go through with the Interstim even though it scares me to death.
I start my journey on the Wahls Diet next Monday (ha, "diet starts Monday", says everyone who has no intention of actually starting a diet). The reason I am delaying my start for a week is I am going to dinner for my 10 year anniversary with my husband so I intend on eating all of the dairy and gluten I can shove in my face, as kind of a last meal so to speak.
We will see how it goes, fingers crossed.
