Aa
?????
So, I had the appointment with the pain specialist today. I am more confused than ever. This doctor is a pain specialist, but also specializes in fibromyalgia, is a physiatrist, and actually seems to really know his stuff regarding other diseases too. Neurological diseases. He has written many papers/articles that have been published and teaches at a medical college, as well as travels to other medical colleges in different states to teach seminars.
First off, I will say I absolutely loved him! He is the first doctor that actually sat down and listened to me. Everything. Not just the first one or two things. He let me tell my whole story. He spent a lot of time with me. Not once did I feel rushed or did he act like he was in a rush. His wife even came to meet him for lunch and he didn't go. He stayed with me until everything was covered. I cried. In front of him. And he didn't think I was nuts! He actually empathized with me. "This must be tough!" His actual words!
Next, he does agree with my diagnosis of fibromyalgia. He has been on the "leading edge" of fibro research, has done many studies, and recently published some new something or other. (Sorry, lol! Can't remember) He is going to work to treat my fibromyalgia and believes that I should be feeling "up to 80% better in about 4 weeks" with the medication, therapy, and counseling. This hospital has a whole fibro program that they have their patient's go through when they are diagnosed. I told him I am open to anything at this point, bring it on. And the therapist is going to get me fitted for an AFO for the foot drop. Which leads me to my next point...
He thinks that I DO have MS??? I don't get it. At first, he noted right away that I have neurological symptoms in addition to the fibro. He thought it was coming from my neck. He asked for my MRI reports, which I didn't bring but was able to pull up on the computer thanks to modern technology. He looked over the reports and said he changed his mind, that the neuro problems were definately coming from the brain. He asked who ruled out MS and why. I told him the whole story, all the neuros, all the tests being negative, etc. He said that I definately have lesions on my brain, which I already knew, and that they pointed to a demylinating process, which I didn't know.
Errr!!!! Anyways, he did a neuro exam on me. Again, positive Babinski, positive Rhomberg's, unable to tandem walk, walk on heels or toes, and also have hyperactive reflexes. Fibro can explain some of the symptoms, but not these. Also, fibro doesn't cause foot drop. He believes that I do have MS and that it is just either really early, or that I don't have relapsing-remitting, which could explain the MRI. He wants to monitor me for "the MS" and if/when things get worse, do another MRI. He said he just may do one anyways in the near future because it'll be a year in January since my last one.
I'm soooo confused!!! I don't understand!?! How does one doctor say it's this, one say it isn't this, another one say it's this, and so on? Why is there no concensus among anyone. It seems like it should be straight forward to me, if they are using the McDonald criteria, which they should be using, right? Maybe this guy is just confident in himself and his clinical skills? I don't know? So, who do I believe? A neuro? An MS specialist? Or a pain/physiatrist doc?
Anyways, that was my appt in a nutshell. It took 2 1/2 hours. By the way, he did say that many (neuro's included) doctors diagnose their patients with fibro when they don't know what it is. A lot of them use it when they don't necessarily even agree that it exists. He said it's almost like a cop-out for them. But I DO have it so...just saying for anyone else who was told this. Also, I went to this guy for 2 reasons; 1) because my mom recommended him; and 2) because he is in a different network than all the other doctors I've seen thus far. So maybe he wouldn't have any preconceived ideas?
Sorry this is so long! I am just really confused I thought I could get some advice/opinions. Hope you all are doing well!
(((hugs)))
Sarah (maybe I should've done this post as a journal entry instead?)
First off, I will say I absolutely loved him! He is the first doctor that actually sat down and listened to me. Everything. Not just the first one or two things. He let me tell my whole story. He spent a lot of time with me. Not once did I feel rushed or did he act like he was in a rush. His wife even came to meet him for lunch and he didn't go. He stayed with me until everything was covered. I cried. In front of him. And he didn't think I was nuts! He actually empathized with me. "This must be tough!" His actual words!
Next, he does agree with my diagnosis of fibromyalgia. He has been on the "leading edge" of fibro research, has done many studies, and recently published some new something or other. (Sorry, lol! Can't remember) He is going to work to treat my fibromyalgia and believes that I should be feeling "up to 80% better in about 4 weeks" with the medication, therapy, and counseling. This hospital has a whole fibro program that they have their patient's go through when they are diagnosed. I told him I am open to anything at this point, bring it on. And the therapist is going to get me fitted for an AFO for the foot drop. Which leads me to my next point...
He thinks that I DO have MS??? I don't get it. At first, he noted right away that I have neurological symptoms in addition to the fibro. He thought it was coming from my neck. He asked for my MRI reports, which I didn't bring but was able to pull up on the computer thanks to modern technology. He looked over the reports and said he changed his mind, that the neuro problems were definately coming from the brain. He asked who ruled out MS and why. I told him the whole story, all the neuros, all the tests being negative, etc. He said that I definately have lesions on my brain, which I already knew, and that they pointed to a demylinating process, which I didn't know.
Errr!!!! Anyways, he did a neuro exam on me. Again, positive Babinski, positive Rhomberg's, unable to tandem walk, walk on heels or toes, and also have hyperactive reflexes. Fibro can explain some of the symptoms, but not these. Also, fibro doesn't cause foot drop. He believes that I do have MS and that it is just either really early, or that I don't have relapsing-remitting, which could explain the MRI. He wants to monitor me for "the MS" and if/when things get worse, do another MRI. He said he just may do one anyways in the near future because it'll be a year in January since my last one.
I'm soooo confused!!! I don't understand!?! How does one doctor say it's this, one say it isn't this, another one say it's this, and so on? Why is there no concensus among anyone. It seems like it should be straight forward to me, if they are using the McDonald criteria, which they should be using, right? Maybe this guy is just confident in himself and his clinical skills? I don't know? So, who do I believe? A neuro? An MS specialist? Or a pain/physiatrist doc?
Anyways, that was my appt in a nutshell. It took 2 1/2 hours. By the way, he did say that many (neuro's included) doctors diagnose their patients with fibro when they don't know what it is. A lot of them use it when they don't necessarily even agree that it exists. He said it's almost like a cop-out for them. But I DO have it so...just saying for anyone else who was told this. Also, I went to this guy for 2 reasons; 1) because my mom recommended him; and 2) because he is in a different network than all the other doctors I've seen thus far. So maybe he wouldn't have any preconceived ideas?
Sorry this is so long! I am just really confused I thought I could get some advice/opinions. Hope you all are doing well!
(((hugs)))
Sarah (maybe I should've done this post as a journal entry instead?)
Hi this is SO typical.
Its no wonder us peeps get confused.
When i had my Disability Living Allowance assessment by their GP, she said she was convinced I had MS, and this was in the early stages. She told me every test she performed on me pointed to MS. IF she had the results then of my VEP test i know she would have confirmed it to me off record.
BUT she cant she is not in that place to do so.
ONLY my neuro can do that, and he aint about to do that.
I wonder sometimes if it is a lottery, or they are only allowed to diagnose so many people each year with MS....to keep the figures down, and the applications for support and money too, as it is always going to be harder to get government disability if you have no label.
OMG I sound cynical....silly me...I AM LOL.
I had a POSITIVE VEP for optical neuritis. Now go figure 70-90% of people with positive optical neuritis have MS.....what are the odds for me that lets say I am one of 30per cent who doesnt even with all my clinical results, MRI lesions, and O BANDS in my LP....I mean who are they trying to kid really.
You probably do have MS but for some bizarre reason they wont tell you that. I mean what would happen if they did? Would the NHS fall down, would there be marching in the streets, riots etc, no just one person would actually bizarrely feel better because they were being taken seriously for a change.
Wow now that could be a whole new concept to life itself lol.
Take us seriously and we will heal ourselves lol.
Go with the flow, listen to this guy and he will help you. Never mind the rest of the them....they are not there to help you he is.
Big hugs. xxx Maria...
Its no wonder us peeps get confused.
When i had my Disability Living Allowance assessment by their GP, she said she was convinced I had MS, and this was in the early stages. She told me every test she performed on me pointed to MS. IF she had the results then of my VEP test i know she would have confirmed it to me off record.
BUT she cant she is not in that place to do so.
ONLY my neuro can do that, and he aint about to do that.
I wonder sometimes if it is a lottery, or they are only allowed to diagnose so many people each year with MS....to keep the figures down, and the applications for support and money too, as it is always going to be harder to get government disability if you have no label.
OMG I sound cynical....silly me...I AM LOL.
I had a POSITIVE VEP for optical neuritis. Now go figure 70-90% of people with positive optical neuritis have MS.....what are the odds for me that lets say I am one of 30per cent who doesnt even with all my clinical results, MRI lesions, and O BANDS in my LP....I mean who are they trying to kid really.
You probably do have MS but for some bizarre reason they wont tell you that. I mean what would happen if they did? Would the NHS fall down, would there be marching in the streets, riots etc, no just one person would actually bizarrely feel better because they were being taken seriously for a change.
Wow now that could be a whole new concept to life itself lol.
Take us seriously and we will heal ourselves lol.
Go with the flow, listen to this guy and he will help you. Never mind the rest of the them....they are not there to help you he is.
Big hugs. xxx Maria...
Hi Sarah,
I resd your post quick because I am running out the door. BUT I know there are people who CAN be Dx. with both MS and other issues...All in all, even though it was confusing for you, it sounds like this doc is good for you...Sometimes being validated can be surprising at first (I know how you feel) A doc being out of network from others you have seen in the same circle can have a whole new perspective on you...
Overall, are you happy with him? Did he give you MORE attention than you EVER had?
I wanna talk more but just can't right now.
I am overwhelmed with work right now but know I feel good about this appt. for you! even though it seems confusing..It takes 1 doctor to turn your care around.. and even if it seems the one you last expected to help? well, he seems to be helping...
Did I miss understand your post or get some of this rught? Be well my friend. We'll chat later on.
Jibby
I resd your post quick because I am running out the door. BUT I know there are people who CAN be Dx. with both MS and other issues...All in all, even though it was confusing for you, it sounds like this doc is good for you...Sometimes being validated can be surprising at first (I know how you feel) A doc being out of network from others you have seen in the same circle can have a whole new perspective on you...
Overall, are you happy with him? Did he give you MORE attention than you EVER had?
I wanna talk more but just can't right now.
I am overwhelmed with work right now but know I feel good about this appt. for you! even though it seems confusing..It takes 1 doctor to turn your care around.. and even if it seems the one you last expected to help? well, he seems to be helping...
Did I miss understand your post or get some of this rught? Be well my friend. We'll chat later on.
Jibby
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