Challenges of living a normal life, when you're anything but. Aka: Spasticity
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.
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
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!
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.
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.
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...
First of all, I wanted to say thank you, to all. You all really helped boost my spirits.
I'm not taking Baclofen, which after reading, I think I might be happy with. It seems that Zanaflex doesn't weaken the muscles as much as Baclofen, over the long term usages. I will say that the Zan isn't as effective as I'd hoped, it peaks one to two hours after you take it, and dies down about 4hrs later. I'm only allowed to take it 3 times a day due to the possibility of liver damage. So that's about 8 hrs a day that I'm suffering.
I'm going to take your advice on the 3T thoracic MRI, I'm calling my family doc next week to have him get me one scheduled.
Always good to hear from you to! I agree with you on looking for a new neuro. I'm going to search out a doc at the Cleveland clinic, unless you know of a good doc in your area (it would be a shorter drive).
I'm taking the Sanctura XR as well, and it has helped so much. It doesn't completely get rid of the spastic bladder, but I'll take what I can get at the moment.
As far as the fatigue thing, you might have something there. The drug doesn't affect me the same every time I take it. For like a week I'll be exhausted, and then for a couple of days I won't even know I've taken it (as far as the exhaustion goes). You've got me thinking on that one!
My doc is a general Neuro that treats MS, is all. Although I was looking for a doc that specializes in MS, his is the name that came up.
Just remember, us "Johnny's" are devious in nature, hehe. I think that by searching out a new neuro, I will gain some control, or at least an illusion of control.
Thanks for the pep talk, and a bit of your wisdom, You really helped bring me up a notch.
Seriously, thank you all, you're my rock in this horrific storm.
I forgot to ask, anyone with facial spasticity, this question.
I've been dealing with spasticity in the face now for about 4 or 5 months. Sometimes it's pretty dang bad, probably is TN, but not according to my Neuro, so I'll stick with spasticity for now.
The other day, I had my right eye go blurry with vertical double vision (double vision with an image on top and bottom????? what ever you call it) that lasted a day and a half. It is one of the reasons I went to the ER. I have been tested for ON with a VEP and got the all clear, even though I had a suspicious looking lesion on my nerve, according to the Neuro.
Question is, could spasticity be pulling at my eye muscles and causing my manifestation of visual problems? I can sometime feel pain that far up in my face, from the muscles.
Another question. I have had problems with the right side of my upper lip going numb in the past (about 4 months ago), and I had it go numb about a week ago. Since then the numbness is cleared, but now I'm continuously slobbering out the right side of my mouth. I mean all the time, my whiskers are damp. It's getting embarrassing now.
Have any of you with facial spasticity had this happen?
I know the kind of abdominal pain that you describe. It hit me driving in the car the first time. Came on like an induced labor, had me panting like a woman in labor and then began to go into that blinking stage after 20 minutes of hard cramping. It was intense! After that, the neuro bumped up the baclofen a level. There are still break through spasms that can be intense, and I don't have a backup plan for when those happen. But next time I'll call my GP instead of neuro.
You sound like you're in a rough place. I'm so sorry. But if I were in your shoes, I'd find another neuro willing to work harder to find answers. I'm having spasiticty issues too, and no spinal MRI for me yet. Neuro won't order one either, saying my symptoms aren't consistent with spinal cord lesions. Apparently, lower body spasticity, urinary frequency and urgency and abdominal spasms don't count. Well, not if they are adequately controlled with the baclofen treatment, that is.
I do wish you the best, and hope you find a better neuro.
You should ask your Neuro: "if you were having these symptoms, would you want and MRI?" I bet he would be yelling bloody murder demanding one. I'm not sure we get the same "Standard of care that they would expect for themselves."
Good idea, Bob. He said he doesn't think anything will show up on it. I might ask my GP for one instead. I do have a chiro working on the 'clinically' justifying it part. The insurance demands a month of treatment progress notes before approving such a thing. I've also considered paying cash then sending the insurance company the bill.
But for right now, I'm wondering what good having that MRI would do anyway. My GP would know. He wants me back in a few weeks for an update anyway. What's a couple more weeks?
Now watch. I've said it. Now you know in the next couple of weeks, something horrible will happen because I've said it.
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