Hi, it's Maggie.
I've been posting about my chronic severe back pain for awhile now--it's what brought me to this board, which I love.
I had been to my neurologist and showed him where the pain was, and asked if it was spasticity, and he just shrugged and said, "hard to tell."
I went to my PCP, and he prescribed different muscle relaxers and an anti-inflammatory, but those didn’t help. He then referred me to a pain clinic, where they gave me Tramadol. That helped for awhile.
Then I called my neurologist again in desperation and his nurse called back to tell me I had a referral to a physician in their spine clinic, and I was so excited.
The appointment was June 4, and I went and the spine specialist evaluated me.
He said that I definitely had “drastically increased tone” or spasticity, and that is the cause of the pain.
However, he said that the source of the pain is not coming from my spine (based on MRIs of my spine, which have come up clear, and which I had done in early April, and copies of which have been sent to my PCP, neurologist, and the spine specialist).
The spine specialist said it's coming from my brain (which, as a person with MS, obviously comes up with lesions on all my MRIs, including the last one). He said he could not think of any cause of the spasticity in my back other than MS.
I wanted to say, well, um, DUH. I haven't had a stroke, nor do I have cerebral palsy. Let's see, I do happen to have MS, and have had it for five years, officially. And I have spasticity.
Do I need an MD to figure this out?
I'm sorry for the sarcasm. I am just reminded of what Sissy said recently of her pain, “does this mean after six years I no longer have MS?”
I did not think (except in my greatest moments of doubt, based on the lack of response from my neurologist) that the cause was other than MS, especially when the MRIs of my spine showed no other issues.
He said that because he was a “spine guy” and my spasticity is coming from my brain he could not help me. When I asked who could, he said I might want to see a different neurologist.
I feel like I am going crazy!!! My neurologist REFERRED me to the “spine guy.” They both work in the same top-ranked Neuroscience Facility in the United States.
At that point, my boyfriend (I feel so silly being 40 years old and using the term “boyfriend,” but I don’t know what else to say!) had an outburst. He basically said in a very aggressive tone that the spine doctor did not see my pain every day and that my neurologist didn’t either, but that he did, and that it was unbearable.
He said it had gone on far too long and it was too late for me to start over with a new neurologist, that they were a neuroscience center especially trained in MS, and that if the spine doctor could not help me than either he or my neurologist needed to find someone who could.
And the spine doctor said, “are you asking me to cure MS?”
And I said, “no, we’re just asking for help,” and I mentioned the suggestions I’d heard here, from trigger point injections to a Baclofen pump.
He said that he would “ask around” for doctors who might “do that sort of thing” and I asked if he would give me a referral and when and he said, “when I find one.”
And then he got up from his chair and said, “at least you’re not a stroke patient—this is how stroke patients with spasticity walk,” and he imitated what I guess he thinks is a typical stroke patient with spasticity.
I do not think this is good medical care, and that is an understatement.
On Monday, I’m going to call and ask if he has been able to give me a referral.
But I wanted to ask all of you: what kind of doctor can evaluate my back and figure out where to do 1. Trigger point injections; 2. Botox injections; and 3. If I might need a Baclofen pump!
I can research myself if the Center has this kind of doctor because based on his attitude I am concerned "the spine guy" won't follow up.
I apologize deeply because one of you may have told me what kind of doctor does this in the past, but I am so tired and I can’t find the post.
I also wanted to ask: I’ve gathered from several posts that some doctors let people take more than 80 mg of oral Baclofen.
I take 30 in the am, 20 in the afternoon, and 30 in the evening.
I was thinking of upping it on my own to 40 in the morning, 40 in the afternoon, and 40 in the evening, just to see if it will help get me through until I get a referral to someone who can help. I want to shower, make meals, tidy the house, grocery shop.
And oh, my sweet daughter. I want to go with her on walks in the woods. I want to take her swimming. I want to smile at her without masking excruciating pain.
I want not to groan and whimper in front of her. I want to get her breakfast without doing it bent at a 90 degree to a 45 degree angle. I want to look forward to picking her up from day camp instead of dreading it because it is easier to be in this kind of pain alone than in front of my girl.
Would it be dangerous to up it? I just can’t get help and I feel like I need to help myself. Not only do I hate the pain, but I hate what it’s doing to me and to those I love.
Please help if you can.
Maggie
I've been posting about my chronic severe back pain for awhile now--it's what brought me to this board, which I love.
I had been to my neurologist and showed him where the pain was, and asked if it was spasticity, and he just shrugged and said, "hard to tell."
I went to my PCP, and he prescribed different muscle relaxers and an anti-inflammatory, but those didn’t help. He then referred me to a pain clinic, where they gave me Tramadol. That helped for awhile.
Then I called my neurologist again in desperation and his nurse called back to tell me I had a referral to a physician in their spine clinic, and I was so excited.
The appointment was June 4, and I went and the spine specialist evaluated me.
He said that I definitely had “drastically increased tone” or spasticity, and that is the cause of the pain.
However, he said that the source of the pain is not coming from my spine (based on MRIs of my spine, which have come up clear, and which I had done in early April, and copies of which have been sent to my PCP, neurologist, and the spine specialist).
The spine specialist said it's coming from my brain (which, as a person with MS, obviously comes up with lesions on all my MRIs, including the last one). He said he could not think of any cause of the spasticity in my back other than MS.
I wanted to say, well, um, DUH. I haven't had a stroke, nor do I have cerebral palsy. Let's see, I do happen to have MS, and have had it for five years, officially. And I have spasticity.
Do I need an MD to figure this out?
I'm sorry for the sarcasm. I am just reminded of what Sissy said recently of her pain, “does this mean after six years I no longer have MS?”
I did not think (except in my greatest moments of doubt, based on the lack of response from my neurologist) that the cause was other than MS, especially when the MRIs of my spine showed no other issues.
He said that because he was a “spine guy” and my spasticity is coming from my brain he could not help me. When I asked who could, he said I might want to see a different neurologist.
I feel like I am going crazy!!! My neurologist REFERRED me to the “spine guy.” They both work in the same top-ranked Neuroscience Facility in the United States.
At that point, my boyfriend (I feel so silly being 40 years old and using the term “boyfriend,” but I don’t know what else to say!) had an outburst. He basically said in a very aggressive tone that the spine doctor did not see my pain every day and that my neurologist didn’t either, but that he did, and that it was unbearable.
He said it had gone on far too long and it was too late for me to start over with a new neurologist, that they were a neuroscience center especially trained in MS, and that if the spine doctor could not help me than either he or my neurologist needed to find someone who could.
And the spine doctor said, “are you asking me to cure MS?”
And I said, “no, we’re just asking for help,” and I mentioned the suggestions I’d heard here, from trigger point injections to a Baclofen pump.
He said that he would “ask around” for doctors who might “do that sort of thing” and I asked if he would give me a referral and when and he said, “when I find one.”
And then he got up from his chair and said, “at least you’re not a stroke patient—this is how stroke patients with spasticity walk,” and he imitated what I guess he thinks is a typical stroke patient with spasticity.
I do not think this is good medical care, and that is an understatement.
On Monday, I’m going to call and ask if he has been able to give me a referral.
But I wanted to ask all of you: what kind of doctor can evaluate my back and figure out where to do 1. Trigger point injections; 2. Botox injections; and 3. If I might need a Baclofen pump!
I can research myself if the Center has this kind of doctor because based on his attitude I am concerned "the spine guy" won't follow up.
I apologize deeply because one of you may have told me what kind of doctor does this in the past, but I am so tired and I can’t find the post.
I also wanted to ask: I’ve gathered from several posts that some doctors let people take more than 80 mg of oral Baclofen.
I take 30 in the am, 20 in the afternoon, and 30 in the evening.
I was thinking of upping it on my own to 40 in the morning, 40 in the afternoon, and 40 in the evening, just to see if it will help get me through until I get a referral to someone who can help. I want to shower, make meals, tidy the house, grocery shop.
And oh, my sweet daughter. I want to go with her on walks in the woods. I want to take her swimming. I want to smile at her without masking excruciating pain.
I want not to groan and whimper in front of her. I want to get her breakfast without doing it bent at a 90 degree to a 45 degree angle. I want to look forward to picking her up from day camp instead of dreading it because it is easier to be in this kind of pain alone than in front of my girl.
Would it be dangerous to up it? I just can’t get help and I feel like I need to help myself. Not only do I hate the pain, but I hate what it’s doing to me and to those I love.
Please help if you can.
Maggie
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