Aa
Sail Away, Sail Away
Hi, all. My troubles are continuing, but I feel a little better today. I'm treating my third UTI in the last 2 1/2 weeks. Everything connected to my pelvic region aches and I'm pretty nauseated. The Vesicare is having a modicum of effect as I have successfully made it to the BR several times since Saturday, when I started it.
I saw my MS Neuro yesterday. He didn't like what he heard or found. He thinks I have a spastic bladder (Ya think?!) and it is waaayyy out of control. He is urging the urologist to max me out on the meds. On exam he saw more weakness on the right side, new weakness on the left, more dysmetria (in finger to nose) and the spasticity was more severe. He wants a full set of MRIs (3T) ASAP and will insist on some kind of DMD if there are a lot of new lesions. This sounds like a "bad neuro" decision, but really isn't. He knows I show be on a med, but because of the severity of my depression on the interferon and the fact that he doesn't think Copaxone will have much effect on my type of disease (mostly neuron death and not so much immune-inflammatory involvement) he was willing to let me be while things were stable.
He dissected my situation much like I had. It is possible that all was worse because of the non-stop UTIs - that is, the MS worsening due to the stimulation of the immune system because of infection. Or, I may be having the increase in symptoms due to new spinal cord lesions. The incontinence and weakness are almost surely due to spinal cord involvement. I suspect that if my MRI is stable - like it always is - he will say that all my problems are due to other factors. I disagreed with a couple things he said and this irritated him a little, but did not color his interactions with me.
I also asked him the question about Autonomic Nervous System involvement in MS. This is what he said.
He thinks it happens all the time. Very frequent, but mostly in the extremities - temperature changes, perfusion (blood flow) causing parts of the limbs to be red or pale or mottled. Changes in the venous system can cause changes in blood pressure, too. Causing changes in sweating. Urinary problems.
In his experience (40 years treating and studying and researching MS) gastroparesis is very UNcommon except for the severely affected, bedridden patient, but colonoparesis (floppy, weak colon) is very common.
Heart effects are seen, though not as often as the peripheral problems, especially in heart rate and rhythm, tachycardias and such.
So, for all of us that have been told that Autonomic Dysfunction does not occur in MS, my neuro very much disagrees.
I'm hanging in there - just trying to land buttered side up.
Quix
I saw my MS Neuro yesterday. He didn't like what he heard or found. He thinks I have a spastic bladder (Ya think?!) and it is waaayyy out of control. He is urging the urologist to max me out on the meds. On exam he saw more weakness on the right side, new weakness on the left, more dysmetria (in finger to nose) and the spasticity was more severe. He wants a full set of MRIs (3T) ASAP and will insist on some kind of DMD if there are a lot of new lesions. This sounds like a "bad neuro" decision, but really isn't. He knows I show be on a med, but because of the severity of my depression on the interferon and the fact that he doesn't think Copaxone will have much effect on my type of disease (mostly neuron death and not so much immune-inflammatory involvement) he was willing to let me be while things were stable.
He dissected my situation much like I had. It is possible that all was worse because of the non-stop UTIs - that is, the MS worsening due to the stimulation of the immune system because of infection. Or, I may be having the increase in symptoms due to new spinal cord lesions. The incontinence and weakness are almost surely due to spinal cord involvement. I suspect that if my MRI is stable - like it always is - he will say that all my problems are due to other factors. I disagreed with a couple things he said and this irritated him a little, but did not color his interactions with me.
I also asked him the question about Autonomic Nervous System involvement in MS. This is what he said.
He thinks it happens all the time. Very frequent, but mostly in the extremities - temperature changes, perfusion (blood flow) causing parts of the limbs to be red or pale or mottled. Changes in the venous system can cause changes in blood pressure, too. Causing changes in sweating. Urinary problems.
In his experience (40 years treating and studying and researching MS) gastroparesis is very UNcommon except for the severely affected, bedridden patient, but colonoparesis (floppy, weak colon) is very common.
Heart effects are seen, though not as often as the peripheral problems, especially in heart rate and rhythm, tachycardias and such.
So, for all of us that have been told that Autonomic Dysfunction does not occur in MS, my neuro very much disagrees.
I'm hanging in there - just trying to land buttered side up.
Quix
Quix, it seems like you can't catch a break lately!
Do know that at least you have us here to lean on. We can empathize with what you're going through. And if we haven't experienced it ourselves, at least we're here to listen.
I hope your disease is not progressing and this is maybe a flare. ???
I hope to see you back on the docks soon. Enough of your fishing trip already....
Thanks for sharing the info about autonomic dysfunction - I had to wear a heart monitor a couple yrs ago because I kept getting a racing heart beat off and on. Plus, I've had problems with drenching night sweats. The docs haven't been able to figure either of them out.
Hugs, Kelly
Do know that at least you have us here to lean on. We can empathize with what you're going through. And if we haven't experienced it ourselves, at least we're here to listen.
I hope your disease is not progressing and this is maybe a flare. ???
I hope to see you back on the docks soon. Enough of your fishing trip already....
Thanks for sharing the info about autonomic dysfunction - I had to wear a heart monitor a couple yrs ago because I kept getting a racing heart beat off and on. Plus, I've had problems with drenching night sweats. The docs haven't been able to figure either of them out.
Hugs, Kelly
Not sure what to add to everyone else's comments, except my sentiments are heartfelt also and I am glad to see you back, with a little more energy, your usual sense of humour and infinete wisdom that must make it difficult being your neuro! Try and keep positive, but if all else fails just turn to your friends on this site..they are here especially on the bad days when life feels tough.
Love and hugs
Sarah xxx
Love and hugs
Sarah xxx
I always get a lift when I see you post on the forum. I am sad you are still suffering so...I wish there was a magic wand that can just make everything ok.
My thoughts are always with you and I am sending you a big huge hug to you. Wish I could be there is person to pass this hug to you.
Always good thoughts coming your way, and I am sending some M@Ms to brighten you day. (not sure if you are a M@M fan, but I am, so thought perhaps you should try some?!)
Love,
Michelle
My thoughts are always with you and I am sending you a big huge hug to you. Wish I could be there is person to pass this hug to you.
Always good thoughts coming your way, and I am sending some M@Ms to brighten you day. (not sure if you are a M@M fan, but I am, so thought perhaps you should try some?!)
Love,
Michelle
JJ - Thank you for the crossed fingers. My legs are crossed for the very same outcome!
6monkeymom - your Dr. Suess comment reminds me of a very old ad for Nabisco Lorna Doones, "The butter in the batter makes the bitter batter better."
Udkas - Thanks for the info on how Vesicare worked for you. I am also seeing a small increment of daily improvement. The pain and cramping is gone, but the incontinence has only improved a little. I neither have a dry mouth nor constipation on the 10mg, so maybe the dose could be increased. AND I hope my insurance covers it. I am already in the donut hole for Medicare this year and have to pay full price for meds until my out of pocket is $4500. That blows bigtime.
To everyone else - thank you so much for your thoughts and comments.
Quix
6monkeymom - your Dr. Suess comment reminds me of a very old ad for Nabisco Lorna Doones, "The butter in the batter makes the bitter batter better."
Udkas - Thanks for the info on how Vesicare worked for you. I am also seeing a small increment of daily improvement. The pain and cramping is gone, but the incontinence has only improved a little. I neither have a dry mouth nor constipation on the 10mg, so maybe the dose could be increased. AND I hope my insurance covers it. I am already in the donut hole for Medicare this year and have to pay full price for meds until my out of pocket is $4500. That blows bigtime.
To everyone else - thank you so much for your thoughts and comments.
Quix
I have the floppy colon! I know that it is better than the troubles you are having with the bladder. I can go over 7 days with nothing despite IBS meds. I have had an entire bottle of mag cit and NOTHING happend. Anyway, hang in there! We love ya!
Ann
Ann
Hi Dr Quix
You are one tough cookie!
I'm glad you've still got your sense of humor!
I hate that you are having these terrible problems!
Keep on hanging in there. I know you will always land buttered side up.
Mike
You are one tough cookie!
I'm glad you've still got your sense of humor!
I hate that you are having these terrible problems!
Keep on hanging in there. I know you will always land buttered side up.
Mike
Hi Q,
thanks for the info that you got from your neuro and for sharing it, as there is not a lot of info on autonomic involvement in MS, I hope that your worsening symptoms are just due to your UTI infection and that you will be back to your old self again soon.
I found that I needed to be on the Vesicare for about 7 days before it really started to kick in, I tried 5mg at first and needed to up my dose to 10mg as 5mg didn't work for me. The dry mouth did improve a bit after a while too. For me this drug is gold, only it can and does often cause bad constipation but I prob had this problem before I went on the Vesicare and found it just made it so much worse.
Thinking of you, hope you are on the mend soon.
Cheers,
Udkas.
thanks for the info that you got from your neuro and for sharing it, as there is not a lot of info on autonomic involvement in MS, I hope that your worsening symptoms are just due to your UTI infection and that you will be back to your old self again soon.
I found that I needed to be on the Vesicare for about 7 days before it really started to kick in, I tried 5mg at first and needed to up my dose to 10mg as 5mg didn't work for me. The dry mouth did improve a bit after a while too. For me this drug is gold, only it can and does often cause bad constipation but I prob had this problem before I went on the Vesicare and found it just made it so much worse.
Thinking of you, hope you are on the mend soon.
Cheers,
Udkas.
I have great sympathy for you with all the UTIs. I had back-to-back ones last winter that landed me in the hospital for three days of IV antibiotics. Are you on the IV antibiotics? Are you administering them yourself at home? I do hope you feel better soon.
Thanks for all the info on the ANS from your neuro. I've often wondered why I have tachycardia for no apparent reason (I do think I have POTS, too, but the tachycardia can come out of nowhere). I used to be very anemic (prior to being dx w/ celiac), but low iron is definitely not the reason for this anymore.
I hope you're up and around, feeling better soon.
Stephanie
Thanks for all the info on the ANS from your neuro. I've often wondered why I have tachycardia for no apparent reason (I do think I have POTS, too, but the tachycardia can come out of nowhere). I used to be very anemic (prior to being dx w/ celiac), but low iron is definitely not the reason for this anymore.
I hope you're up and around, feeling better soon.
Stephanie
I'm very glad the medicine is starting to help. So sorry about all the UTI's :-(
I hope that you get relief from everything soon, and find a DMD that will work for you.
((hugs)) and I'm glad you are trying to land butter side up. The last thing we need is a Board-wide Bitter Butter Battle :-) Or maybe I just need to stop reading Dr, Seuss LOL
Please take care. You mean a lot to all of us!
~Jess
I hope that you get relief from everything soon, and find a DMD that will work for you.
((hugs)) and I'm glad you are trying to land butter side up. The last thing we need is a Board-wide Bitter Butter Battle :-) Or maybe I just need to stop reading Dr, Seuss LOL
Please take care. You mean a lot to all of us!
~Jess
COMMUNITY LEADER
Hey Quix,
Glad to see your trying to land butter side up lol! Autonomatic dysfunctions are a pet interest for me, love every *** bit of information.
I'm crashing, so i'll say thanks for the updated sort of good new bad news, sheesh its turning out to be that type of day. My fingers are crossed that you'll get some good news and relief, anyday now!!!
Cheers.....JJ
Glad to see your trying to land butter side up lol! Autonomatic dysfunctions are a pet interest for me, love every *** bit of information.
I'm crashing, so i'll say thanks for the updated sort of good new bad news, sheesh its turning out to be that type of day. My fingers are crossed that you'll get some good news and relief, anyday now!!!
Cheers.....JJ
thank you so much for asking your Neuro's opinion / thought on MS and AD ;)
Makes sense to me.....I'm Living it :(...No fun! However I am starting yet anotherr med tomorrow for my AD (NCS). please keep fingers, toes, and legs crossed that this one will work.
In the last couple weeks (adding last night) I have had Near Syncope 5 times and Syncope 3. Gotta get some relief as when this happens.....I am wiped out for the next day or two.
Thanks again and I am glad you are getting your Sea Legs back! ...Wait, did that even make any sense? Oh well, in my goofy mind I got a chuckle..Lol
Wishing you yet another good day tomorrow!
~Tonya
Quix,
It is good to see you post , if only for a short while. Sorry that things are slow to resolve and seem to be worse in some areas.
I do like you neuro and the fact that he can take disagreements and not let his ego get in the way. I appreciate you clarifying the Autonomic Nervous System involvement as that has been tossed around by my docs.
I hope that you can find relief soon!!! It's good to hear you're hanging in there.
Sending good thoughts your way,
Ren
It is good to see you post , if only for a short while. Sorry that things are slow to resolve and seem to be worse in some areas.
I do like you neuro and the fact that he can take disagreements and not let his ego get in the way. I appreciate you clarifying the Autonomic Nervous System involvement as that has been tossed around by my docs.
I hope that you can find relief soon!!! It's good to hear you're hanging in there.
Sending good thoughts your way,
Ren
Thanks, Lulu and Pastor Dan. I forgot something about the Autonomic Nervous System that makes it really quite likely that MS would affect it. The AD runs in a column in the spinal cord immediately adjacent to the corticospinal tract, whcih is one of the more frequently affects spots in the cord. It is easily to see that a lesion could also extend into a neighboring colum.
Columns in the spinal cord are something we haven't talked about. The spinal cord is VERY rigidly organized, with certain data passing to or from the brain in a specific place. For instance the motor neurons (causing our muscles to act) run in the Anterior Horns and the sensory data running always in the Posterior Horns. Each of these groups of specific neurons run in their own "column".
Q
Columns in the spinal cord are something we haven't talked about. The spinal cord is VERY rigidly organized, with certain data passing to or from the brain in a specific place. For instance the motor neurons (causing our muscles to act) run in the Anterior Horns and the sensory data running always in the Posterior Horns. Each of these groups of specific neurons run in their own "column".
Q
Happy to hear a smidgeon of positive energy from out your way.
Doc Momma Bear Q, with all the water problems you've been experiencing, are you sure you want to stay in that part of the country? ;>D
Really sounds like you have a pretty good neuro this time around. The autonomic info is interesting.
Peace, prayers, blessings.
Doc Momma Bear Q, with all the water problems you've been experiencing, are you sure you want to stay in that part of the country? ;>D
Really sounds like you have a pretty good neuro this time around. The autonomic info is interesting.
Peace, prayers, blessings.
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