Challenges of living a normal life, when you're anything but. Aka: Spasticity

[johnnymutt]

Hey gang! I've been hiding in the background here lately, debating, accepting. My last neuro visit ( about 2 months ago) really busted my chops. I now feel as if I have wasted the last year of my life with this guy. Perhaps he is correct, and my Vitamin D deficiency is the underlying culprit to all my problems, I just don't know anymore. He told me everything from, it's probably your weight that is causing your problem, to it's just carpal tunnel.

I decided to accept that perhaps he was right. 3 weeks after I left his office, with my new script of Vit D in hand, I actually started to feel a little better. On top of that I started physical therapy, which was helping a bit. But that's when hell visited my front door.

It took going to my family doctor, who checked me for a UTI, to going to my Urologist who said it was spasticity of the bladder, and then finally the emergency room, that didn't have a clue as to what was wrong with me.

Ends up, it is spasticity, now in my whole abdomen. A completely new problem, on top of the spasticity that already exists in my arms, legs, and face. I thought I knew what pain was before this. I tell you right now, I was wrong. To have your guts feeling like they are ripping apart from the inside, and there is nothing you can do about it to ease the pain, is quite a sensation. Now to eat or drink without pain is a challenge, as my throat and stomach start to seize ever time. To feel where the food actually is in your intestines as it moves from point A to point B. And lets not forget about the sides or the diaphragm, the chest, I mean everything in the abdomen.

I am now on 2 medications to help me pee. Flomax and Sanctura. I started a new med for the spasticity as well, Zanaflex. Between the sanctura and the zanaflex, I have been pretty dang tired. I feel myself slowly spiraling down that hole I lived in for 4 years, depression. I am fighting it oh so much. I really do not want to go back there ever again.

I just don't know what to do or where to turn for help anymore. I know I have something wrong with me, seems that I'm the only one that knows it. My work is suffering so much, they don't see anything wrong with me, and are only going on what I tell them. I feel worthless as a man to my wife. I am really at this point, putting up a good front for my 6yr old daughter, I want her to have a normal happy childhood, and not live under the stress of having a sick parent.

Ok, I won't go on and on, so to tie this up, I may have some sort of a new lead. It seems that my lactic acid levels are elevated, and have been on multiple blood draws. Perhaps there is something there that can be read into.

I apologize for two things, one, for lurking around in the background, and not at least saying hey every now and again
Two, for making you sit there and read through all of this. I know it's a bit all over the place, I just have so much going on in life that it's hard to pinpoint on one thing. And here I go, still typing, still not ending this post, Lol ;-) .

Ok, good day to you all, thanks for listening to me blather on and on.
Johnny

[jensequitur]

Johnny, I agree with Lulu - it's time to search for a new neuro, one that will help you look for a diagnosis.  

Are you taking Baclofen?  It helps with the moderate muscle spasms, although the big ones break through and I have to pop some Flexaril.  It also sounds like you might have to self-cath for a while.  

From personal experience, I know that spasticity comes from lesions on the spine.  Have you had a 3T thoracic MRI?  I highly recommend that everybody who's being looked at for MS have their spine scanned, on the highest Tesla possible.  I finally had mine done, and the scan showed what I've known for years - I have several lesions on the spine, some upper, some lower.  They cause my throat to spasm, my chest to spasm, my abdomen to tense and relax involuntarily (rather like I was doing crunches - very strange!) and the muscles around the bottom of the ribs also spasm.  I feel very fortunate that so far that activity's been on the surface...

[Lulu54]

Johnny,
so good to see you come out of the shadows - it always makes me smile when my up north buddy checks in, even if it is with such cra ppy news.

From all you have experienced, perhaps it is time to move on to another neuro?  An MS one this time?  You will need a referral from your doctor to get into any of them, but it sounds like either your GP or the urologist could do that for you.

Sanctura is my favorite drug - ask for the extended release form and take it before bedtime on an empty stomach is how I do it.

Is it possible that you are suffering from fatigue and the weight of the depression and not from the drugs itself?  

Bladder spasticity is a significant symptom - now they need to get you a name for this condition.  

Hang in there and don't be a stranger, ok?

hugs, Lulu

[COBOB]

Johnny,

First off, your Dr. really owes you an explanation for the spasticity.  As far as I know, decreased Vit D is not associated with increased muscle spasticity.  And I seem to remember an article I read somewhere along the way the increased levels of lactic acid are associated with a neuro protective effect (along with being associated with one of the most common forms of arthritis GOUT.)  

They are treating the symptom/sign (Effect), spasticity, but are they looking for the underlying Cause.  I don't think I would let them off that easy.   Is your Neurologist an MS doc or a general Neurologist?  What did the Urologist say about the bladder spasticity?  It is not something you can fake!   Now you have a verified medical sign that the neurologist should have to explain.  This is not something related to weight, Vit D or the phase of the moon.

Bob

[wiggles94]

Hi Johnny.  So sorry to hear about all that you have been going through.
I am fairly new to this site, but have found everyone so helpful.  Seems like you are a bit overwhelmed right now and your life seems out of control.  But given what you are going through, that seems very normal.

Is there ONE thing in your life right now that you can control and change that might help give you back a sense of empowerment and make you feel better?
Best of luck to you and glad you are reaching out.  It is awful to feel alone in all of this!
Take care.  BTW - I am partial to "Johnnys" because my son's name is John, and I often call him Johnny.  Be well!

[bairdy]

hi
no no no!! dont ever say sorry for being in the background .
some times its hard to put in words how you feel and post on hear , i have been there!!
but the people on hear are allways hear for you to have your say on what ever the subject?.
some days its good to let it all out.
i think you need to go back to your doctor and talk to him you know your own body and its telling you something is wrong.
sorry i cant give you any more advice as im new to this journey and still finding my feet,
hang in there mate
regards bairdy