Seasha, thank you with all my heart for saying I could start a new thread. To all, this is a very long post with history included. I don’t want to take up your time unnecessarily, so please, if you think you can help, skip down to my questions in bold.
I am very worried. The last day I was in the hospital the doctor there said that since August 2012 of last year I had 3 new lesions in my temporal lobe, and 2 were active (this was on Sept. 4, just about a week ago). He said his diagnosis was a “relapse with the UTI as an inciting event,” and he had the hospital schedule a follow-up with my neurologist on September 24th!!!
I was extremely concerned because this seemed far too long to wait. I also was in a lot of pain when I left the hospital, and I have been in a lot of pain since.
So I called my neurologist’s office and it turned out he had not looked at the MRI. I explained to the nurse what it said and they fit me in on Friday Sept. 6.
I feel like I have to explain what this relapse feels like. Please bear with me. I don’t know when it started. I was on morphine and the IV antibiotics for the UTI for those 7 days in the hospital, and all I know is when they took me off the morphine I had new pain.
My two biggest problems are 1. severe clenching from the abdomen down and 2. feeling like my stomach is being eaten from the inside out.
1. The clenching starts just below my ribs and stretches around my back, and it continues down to my abdomen, lower back, bottom, and tops of my thighs. I also get seizing foot cramps in both feet, and I have to keep kicking them out.
This clenching is so bad that I can’t sit still. When I sit, I’ll find I am lifting my bottom off the seat and crossing my legs as hard and tight as I can without meaning to. I can walk, but I walk very stiffly and slowly because of the clenching and the pain.
The clenching is constant, and has been since I left the hospital.
I told my neurologist about the clenching, and he put me back on Percocet every four hours for pain. He also has me continuing to take Neurontin, 100 mg 3 times a day, which is a new drug for me. He also raised my Baclofen. I used to just take 20 at night for spasticity, and now he has me take 20 in the morning and 20 at night.
Unfortunately, none of this seems to be working very well. The Percocet seems to be losing its efficacy. I can get about 2 hours out of one. It’s not that it stops the clenching so much as it keeps it at a distance enough so I can think straight (relatively
) and unstiffen enough to sit still and walk better.
I don’t think the Neurontin is helping, but it is hard to know, because in the day I am on Percocet, too.
20 mg of Baclofen does not cut it at all, in the day or at night. What I have been doing is taking 40 mg at night. If I take that along with 2 Clonazepam and my 3rd Neurontin I can get 8 hours of sleep, but only every other night, which I know is very strange.
So, for example, on Sept. 8th I took that and slept 8 hours, but last night (Sept. 9th) I took the same thing at the same time and for 5 hours I was up clenching and twisting around. Then I broke down and took 10 more Baclofen and finally fell asleep at 5 am.
All I can do at these times is watch back to back Law and Order: Special Victims Units on hulu. I know it’s ridiculous, but I can’t read or write or think or clean the house, which really, really needs to be cleaned.. The TV just distracts me from the pain enough so I feel like I’m not going crazy. Last night I watched 5 episodes. Who knew SVU would be an effective pain reliever? Thank you, Mariska Hargitay!!! 
2. I also feel at least a few times a day like my stomach is being eaten from the inside out, especially after I have eaten. The Percocet helps with that, but it is pretty severe and scary. The bouts of the pain last about an hour or so. I do wonder if maybe it could be from all those antibiotics?
A couple days after I left the hospital my tongue turned black and I looked it up on google and apparently there is a condition called Hairy Black Tongue (which is actually kind of funny, when you think about it. What would they call MS if they just followed the same rules. Messed Up Brain and Spine?) that can be caused by prolonged use of antibiotics. I started taking probiotics and it’s getting better. Now my husband calls it fuzzy brown tongue.
The other problems I have I don’t know whether to chalk up to the relapse or the lack of sleep or the new meds (the raised Percocet, the Neurontin).
--I have severe hand tremors on and off throughout the day.
--My face doesn’t look right. My mouth is always drawn in and turned down, and my eyes are always at half-mast.
--My vision is sometimes blurry.
--My cognition is slow and my sense of time seems to be very off. Sometimes it will feel like an hour has passed and it’s been ten minutes, but more often it will seem like at most a half an hour has passed and it’s been two. I am having a hard time prioritizing or making sense of things.
The good things are that I can still pee normally since the cystoscopy. And the probiotics and stool softener have gotten things moving again! And I persuaded my neurologist to stop prescribing Bentyl, thank goodness. He is having me take Pyrideum and Flomax for my bladder.
All of this has been going on since September 4th, the day I left the hospital. When I saw my neurologist on the 6th he wrote these prescriptions. He did a clinical exam and I did well, but I had taken a leftover Percocet to get through the car ride down. He said my lesions did not match my symptoms and that he thought that we should “watch and wait.”
He said he did want to get an MRI of my T-spine and I just got ahold of the nurse today and got it scheduled for Friday the 13th at noon. I told the nurse that the pain was still severe and I asked if I could schedule a follow-up appointment after the results from the MRI were in and she said he’d probably just give me a call. I also told her I needed more Percocet for the pain. When I saw the neurologist on Friday he said just to call him when I ran out of my old Percocet, but it turns out the prescription has to be written, which is why my husband had to drive to Colorado today.
So my questions are:
1. Is it normal to have this much pain with an MS relapse? I have had pain with relapses before, and with just day-to-day MS symptoms, in the past 8 years since my diagnosis. But this pain is beyond anything. I live from Percocet to Percocet. I count myself lucky if I can sleep 5 hours. Maybe it would be different if I hadn’t had so much pain with the UTI and cystitis for a month before the dr. said I was having the relapse because of the UTI?
2. Why aren’t the meds working? I have heard good things about Neurontin but it hasn’t seemed to help yet???
3. What does my neurologist mean when he says my symptoms don’t match my lesions and we should watch and wait? Watch and wait for what?
I do not mean to be impatient but we watched and waited with my UTI and I ended up in the hospital for a week after almost a month of escalating pain and MS symptoms, and now I’m having a relapse beyond anything I have ever experienced.
4. Am I just being a brat, as my Mom would say? I know there are so many people who have so much more severe MS issues than I do. You can be honest with me and tell me. It’s just for me—I’ve been lucky. I have only had two severe relapses in 8 years, and neither one has been anywhere near as bad as this one. And for the most part I’ve been able to keep working full-time and be there for my family.
So I guess what I am saying is I am ready to accept that this is what is happening, that it’s inevitable. But I just want to know what the plan is. How long am I supposed to live with this kind of pain and this lack of sleep without going crazy? If it’s normal for my neurologist not to have a plan, then that is OK, too. I just need to know if any of this is normal.
I also keep thinking about something Kimba22 said, about not being near a Trauma 1 hospital? My MS was so stable for so many years I guess I just didn’t think about it before, but now it seems like being in a rural area is really hurting me (nothing against rural areas—I grew up in rural Michigan). But maybe my husband and I need to go to Denver?
In the end, I guess all these questions above lead to that final question: I am feeling like I am not getting the right kind of care. But I worry lack of sleep and the constant pain meds are making me paranoid. So if you can give me a reality check, please do.
I just got on the site and saw Brothrgoose, you posted that you’d emailed. My husband is sleeping now. With the Percocet, I was able to take care of my little girl tonight!!! I took extra. I do not feel comfortable with that and I am going to try not to do it, but I got to hear all about her first grade class.
I am about to go to sleep too, if I can, and I’ll ask my husband for help with the email in the morning. If I can’t sleep, there’s always Law and Order: SVU! And me knowing you all are there. 
Just saying that makes me start to cry with gratitude and this fear I keep trying to tamp down in my day to day life.
I haven’t been so scared in all my life, even when I was diagnosed, and I don’t think back to back Law and Order SVUs would keep on keeping me on without knowing you are there and you care. Bless this board, and all of you.
Emily
PS. And Kimba, I just also saw what you asked about the IV steroids. He did not mention steroids at all. I have been on oral Prednisone for my first and second relapse. It helped both times, though the side effects were unpleasant—nothing near what I’ve been through lately, though, at all. I’ve never been on IV steroids. Is this something we should look into?
Emily.
I am very worried. The last day I was in the hospital the doctor there said that since August 2012 of last year I had 3 new lesions in my temporal lobe, and 2 were active (this was on Sept. 4, just about a week ago). He said his diagnosis was a “relapse with the UTI as an inciting event,” and he had the hospital schedule a follow-up with my neurologist on September 24th!!!
I was extremely concerned because this seemed far too long to wait. I also was in a lot of pain when I left the hospital, and I have been in a lot of pain since.
So I called my neurologist’s office and it turned out he had not looked at the MRI. I explained to the nurse what it said and they fit me in on Friday Sept. 6.
I feel like I have to explain what this relapse feels like. Please bear with me. I don’t know when it started. I was on morphine and the IV antibiotics for the UTI for those 7 days in the hospital, and all I know is when they took me off the morphine I had new pain.
My two biggest problems are 1. severe clenching from the abdomen down and 2. feeling like my stomach is being eaten from the inside out.
1. The clenching starts just below my ribs and stretches around my back, and it continues down to my abdomen, lower back, bottom, and tops of my thighs. I also get seizing foot cramps in both feet, and I have to keep kicking them out.
This clenching is so bad that I can’t sit still. When I sit, I’ll find I am lifting my bottom off the seat and crossing my legs as hard and tight as I can without meaning to. I can walk, but I walk very stiffly and slowly because of the clenching and the pain.
The clenching is constant, and has been since I left the hospital.
I told my neurologist about the clenching, and he put me back on Percocet every four hours for pain. He also has me continuing to take Neurontin, 100 mg 3 times a day, which is a new drug for me. He also raised my Baclofen. I used to just take 20 at night for spasticity, and now he has me take 20 in the morning and 20 at night.
Unfortunately, none of this seems to be working very well. The Percocet seems to be losing its efficacy. I can get about 2 hours out of one. It’s not that it stops the clenching so much as it keeps it at a distance enough so I can think straight (relatively
) and unstiffen enough to sit still and walk better.I don’t think the Neurontin is helping, but it is hard to know, because in the day I am on Percocet, too.
20 mg of Baclofen does not cut it at all, in the day or at night. What I have been doing is taking 40 mg at night. If I take that along with 2 Clonazepam and my 3rd Neurontin I can get 8 hours of sleep, but only every other night, which I know is very strange.
So, for example, on Sept. 8th I took that and slept 8 hours, but last night (Sept. 9th) I took the same thing at the same time and for 5 hours I was up clenching and twisting around. Then I broke down and took 10 more Baclofen and finally fell asleep at 5 am.
All I can do at these times is watch back to back Law and Order: Special Victims Units on hulu. I know it’s ridiculous, but I can’t read or write or think or clean the house, which really, really needs to be cleaned.
. The TV just distracts me from the pain enough so I feel like I’m not going crazy. Last night I watched 5 episodes. Who knew SVU would be an effective pain reliever? Thank you, Mariska Hargitay!!! 2. I also feel at least a few times a day like my stomach is being eaten from the inside out, especially after I have eaten. The Percocet helps with that, but it is pretty severe and scary. The bouts of the pain last about an hour or so. I do wonder if maybe it could be from all those antibiotics?
A couple days after I left the hospital my tongue turned black and I looked it up on google and apparently there is a condition called Hairy Black Tongue (which is actually kind of funny, when you think about it. What would they call MS if they just followed the same rules. Messed Up Brain and Spine?
) that can be caused by prolonged use of antibiotics. I started taking probiotics and it’s getting better. Now my husband calls it fuzzy brown tongue.The other problems I have I don’t know whether to chalk up to the relapse or the lack of sleep or the new meds (the raised Percocet, the Neurontin).
--I have severe hand tremors on and off throughout the day.
--My face doesn’t look right. My mouth is always drawn in and turned down, and my eyes are always at half-mast.
--My vision is sometimes blurry.
--My cognition is slow and my sense of time seems to be very off. Sometimes it will feel like an hour has passed and it’s been ten minutes, but more often it will seem like at most a half an hour has passed and it’s been two. I am having a hard time prioritizing or making sense of things.
The good things are that I can still pee normally since the cystoscopy. And the probiotics and stool softener have gotten things moving again! And I persuaded my neurologist to stop prescribing Bentyl, thank goodness. He is having me take Pyrideum and Flomax for my bladder.
All of this has been going on since September 4th, the day I left the hospital. When I saw my neurologist on the 6th he wrote these prescriptions. He did a clinical exam and I did well, but I had taken a leftover Percocet to get through the car ride down. He said my lesions did not match my symptoms and that he thought that we should “watch and wait.”
He said he did want to get an MRI of my T-spine and I just got ahold of the nurse today and got it scheduled for Friday the 13th at noon. I told the nurse that the pain was still severe and I asked if I could schedule a follow-up appointment after the results from the MRI were in and she said he’d probably just give me a call. I also told her I needed more Percocet for the pain. When I saw the neurologist on Friday he said just to call him when I ran out of my old Percocet, but it turns out the prescription has to be written, which is why my husband had to drive to Colorado today.
So my questions are:
1. Is it normal to have this much pain with an MS relapse? I have had pain with relapses before, and with just day-to-day MS symptoms, in the past 8 years since my diagnosis. But this pain is beyond anything. I live from Percocet to Percocet. I count myself lucky if I can sleep 5 hours. Maybe it would be different if I hadn’t had so much pain with the UTI and cystitis for a month before the dr. said I was having the relapse because of the UTI?
2. Why aren’t the meds working? I have heard good things about Neurontin but it hasn’t seemed to help yet???
3. What does my neurologist mean when he says my symptoms don’t match my lesions and we should watch and wait? Watch and wait for what?
I do not mean to be impatient but we watched and waited with my UTI and I ended up in the hospital for a week after almost a month of escalating pain and MS symptoms, and now I’m having a relapse beyond anything I have ever experienced. 4. Am I just being a brat, as my Mom would say? I know there are so many people who have so much more severe MS issues than I do. You can be honest with me and tell me. It’s just for me—I’ve been lucky. I have only had two severe relapses in 8 years, and neither one has been anywhere near as bad as this one. And for the most part I’ve been able to keep working full-time and be there for my family.
So I guess what I am saying is I am ready to accept that this is what is happening, that it’s inevitable. But I just want to know what the plan is. How long am I supposed to live with this kind of pain and this lack of sleep without going crazy? If it’s normal for my neurologist not to have a plan, then that is OK, too. I just need to know if any of this is normal.
I also keep thinking about something Kimba22 said, about not being near a Trauma 1 hospital? My MS was so stable for so many years I guess I just didn’t think about it before, but now it seems like being in a rural area is really hurting me (nothing against rural areas—I grew up in rural Michigan). But maybe my husband and I need to go to Denver?
In the end, I guess all these questions above lead to that final question: I am feeling like I am not getting the right kind of care. But I worry lack of sleep and the constant pain meds are making me paranoid. So if you can give me a reality check, please do.
I just got on the site and saw Brothrgoose, you posted that you’d emailed. My husband is sleeping now. With the Percocet, I was able to take care of my little girl tonight!!! I took extra. I do not feel comfortable with that and I am going to try not to do it, but I got to hear all about her first grade class.
I am about to go to sleep too, if I can, and I’ll ask my husband for help with the email in the morning. If I can’t sleep, there’s always Law and Order: SVU!
And me knowing you all are there. Just saying that makes me start to cry with gratitude and this fear I keep trying to tamp down in my day to day life. I haven’t been so scared in all my life, even when I was diagnosed, and I don’t think back to back Law and Order SVUs would keep on keeping me on without knowing you are there and you care. Bless this board, and all of you.
Emily
PS. And Kimba, I just also saw what you asked about the IV steroids. He did not mention steroids at all. I have been on oral Prednisone for my first and second relapse. It helped both times, though the side effects were unpleasant—nothing near what I’ve been through lately, though, at all. I’ve never been on IV steroids. Is this something we should look into?
Emily.
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