Aa
problems walking
Hi, I'm new here and have some questions.
1. When do solumedrol infusions start to kick in? I had 5 every other day last week, and after infusion 3, i was able to walk a lot better. However, now that its been 5 days since my last infusion, last night my legs started dragging again, esp. My left one, and i can't do nearly as many leg lifts as 2 days ago.
2. I've begun having awful burning pain from my sacrum down, especialy on the inside, as well as what feels like spasms in my rectal area and above my knees. I lost bowel control at least 12 years ago and have a permanent colostomy for that. Is this typical?
3. I had an abnormal ssep and scattered hyperintense lesions on t2 and flair in my periventricular and subcortical area. What does that mean?
4. I've been suffering for 15 years with relapsing remitting, more relapsing than remitting except for the past 3 years when I felt wonderful. Now I'm exhausted all the time, can barely get around the house, i have a tremor, especially in the mornings, must lie down to rest a lot, sitting makes the burning pain worse, as does having to urinate.
5. Ive lost weight even on steroids, and have little appetite.
6. Is it normal to have intense ringing in your ears, get dizzy when bending down or even looking up then down, to have blurry vision at times, and just generally to feel rotten right after solumedrol infusions? I don't really feel much better than i did before the infusions right now.
Do the ms drugs alter the course of the disease? What good do steroids do?
Thanks! Melinda
1. When do solumedrol infusions start to kick in? I had 5 every other day last week, and after infusion 3, i was able to walk a lot better. However, now that its been 5 days since my last infusion, last night my legs started dragging again, esp. My left one, and i can't do nearly as many leg lifts as 2 days ago.
2. I've begun having awful burning pain from my sacrum down, especialy on the inside, as well as what feels like spasms in my rectal area and above my knees. I lost bowel control at least 12 years ago and have a permanent colostomy for that. Is this typical?
3. I had an abnormal ssep and scattered hyperintense lesions on t2 and flair in my periventricular and subcortical area. What does that mean?
4. I've been suffering for 15 years with relapsing remitting, more relapsing than remitting except for the past 3 years when I felt wonderful. Now I'm exhausted all the time, can barely get around the house, i have a tremor, especially in the mornings, must lie down to rest a lot, sitting makes the burning pain worse, as does having to urinate.
5. Ive lost weight even on steroids, and have little appetite.
6. Is it normal to have intense ringing in your ears, get dizzy when bending down or even looking up then down, to have blurry vision at times, and just generally to feel rotten right after solumedrol infusions? I don't really feel much better than i did before the infusions right now.
Do the ms drugs alter the course of the disease? What good do steroids do?
Thanks! Melinda
Ess, thanks for your reply. I have not yet been dx'd with MS, but I'm wondering why not. My last MRI's were done in April of this year, and it's the first time, to my knowledge, that they found the hyperintense lesions on my brain, and it's the first time my SSEP was abnormal, to my knowledge.
My neurologist is not an MS specialist, and he's fed up with me, thinks I'm faking having a hard time walking (like what would THAT gain me??), and when I told him what all is going on with me, he said, "It's kinda like when you take your car to the shop, and you tell them your headlights don't work, your trunk won't open, and your brakes are bad - they don't have anything to do with each other." Meaning, "quit complaining, I'm not going to correlate any of your test results, I'm going to read the abnormal ones to you, then I'm going to tell you they're normal, b/c I can't figure out how they correlate with each other, etc." I'm getting a referral to another neuro who specializes in MS and neuromuscular diseases, as well as EMG and evoked potentials, so hopefully he'll be able to help.
I lost all bowel control early on with this, during one of my relapses, and due to not being able to get in the water to do water therapy being incontinent, they went ahead and put in a colostomy.
Does MS cause psychosis, like hallucinations, not knowing where you are, doing strange things like jumping off the porch and lying in the snow, paranoia, etc.? For a few years, that was happening to me, as well as bouts of severe nausea/vomiting where I'd throw up for 4-5 days and would be unable to lift my head off the bed or move my eyes w/o vomiting. I suffered with that for about 3 years on a regular basis. No one ever figured out why, and there was nothing that helped - no nausea medicine or anything. It was a head thing, not a stomach thing. I'd get this funny feeling in the back of my head, and I'd know before the day was out I'd be vomiting. I haven't had that for about 4 years now, thank the Lord, and I went 3 years without any symptoms other than fatigue until 2 months ago. That was by far the longest remission I'd had, and I thought it was gone for good. I was dx'd with RSD 4 years ago, but RSD doesn't cause all the stuff I have, and even the burning pain was not caused by any kind of injury.
My neurologist is not an MS specialist, and he's fed up with me, thinks I'm faking having a hard time walking (like what would THAT gain me??), and when I told him what all is going on with me, he said, "It's kinda like when you take your car to the shop, and you tell them your headlights don't work, your trunk won't open, and your brakes are bad - they don't have anything to do with each other." Meaning, "quit complaining, I'm not going to correlate any of your test results, I'm going to read the abnormal ones to you, then I'm going to tell you they're normal, b/c I can't figure out how they correlate with each other, etc." I'm getting a referral to another neuro who specializes in MS and neuromuscular diseases, as well as EMG and evoked potentials, so hopefully he'll be able to help.
I lost all bowel control early on with this, during one of my relapses, and due to not being able to get in the water to do water therapy being incontinent, they went ahead and put in a colostomy.
Does MS cause psychosis, like hallucinations, not knowing where you are, doing strange things like jumping off the porch and lying in the snow, paranoia, etc.? For a few years, that was happening to me, as well as bouts of severe nausea/vomiting where I'd throw up for 4-5 days and would be unable to lift my head off the bed or move my eyes w/o vomiting. I suffered with that for about 3 years on a regular basis. No one ever figured out why, and there was nothing that helped - no nausea medicine or anything. It was a head thing, not a stomach thing. I'd get this funny feeling in the back of my head, and I'd know before the day was out I'd be vomiting. I haven't had that for about 4 years now, thank the Lord, and I went 3 years without any symptoms other than fatigue until 2 months ago. That was by far the longest remission I'd had, and I thought it was gone for good. I was dx'd with RSD 4 years ago, but RSD doesn't cause all the stuff I have, and even the burning pain was not caused by any kind of injury.
Hi, Melinda. I'm sorry you're having such a rough time of it. I know that really sux.
Is this your first course of IV steroids? People react differently to them so it's almost impossible to make any general statements. Some have severe mood issues (mostly grumpy :-) ), some have insomnia, some have weight gain that's likely to be quite temporary, some get huge bursts of energy, and so on. Some, like me, have no particular reaction except an astoundingly red face, also very temporary.
If the steroids are going to work, that might be right away, and it might not be for even two weeks. You do need to give the treatments time. That having been said, though, it's also true that they don't always work. Their job is to interrupt the relapse by significantly reducing inflammation, and most people report better relief if the steroids are started early in the relapse. But once again, people differ.
How long ago were you diagnosed with MS? Are you saying that your lost bowel control and subsequent colostomy 12 years ago are part of your MS? I have not heard of a colostomy from MS, though I know bowel issues can be a result of this disease.
When was your last MRI? The one you described is quite consistent with MS, all other things being equal. Do you see an MS neurologist regularly? And hasn't your doctor talked with you about the various drugs? There are now 10 treatments available, all of which have been shown to reduce relapses and possibly slow disease progression. All have some side effects, but luckily nearly everyone can find a tolerable method, maybe after trial and error a couple of times. Please see the National MS Society web site for full information on these meds.
ess
Is this your first course of IV steroids? People react differently to them so it's almost impossible to make any general statements. Some have severe mood issues (mostly grumpy :-) ), some have insomnia, some have weight gain that's likely to be quite temporary, some get huge bursts of energy, and so on. Some, like me, have no particular reaction except an astoundingly red face, also very temporary.
If the steroids are going to work, that might be right away, and it might not be for even two weeks. You do need to give the treatments time. That having been said, though, it's also true that they don't always work. Their job is to interrupt the relapse by significantly reducing inflammation, and most people report better relief if the steroids are started early in the relapse. But once again, people differ.
How long ago were you diagnosed with MS? Are you saying that your lost bowel control and subsequent colostomy 12 years ago are part of your MS? I have not heard of a colostomy from MS, though I know bowel issues can be a result of this disease.
When was your last MRI? The one you described is quite consistent with MS, all other things being equal. Do you see an MS neurologist regularly? And hasn't your doctor talked with you about the various drugs? There are now 10 treatments available, all of which have been shown to reduce relapses and possibly slow disease progression. All have some side effects, but luckily nearly everyone can find a tolerable method, maybe after trial and error a couple of times. Please see the National MS Society web site for full information on these meds.
ess
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
