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Unsure how to proceed - MS vs Lupus vs Fibromyalgia?
Hello! I am happy to have found this community because honestly, I am a little lost at how to proceed. To start, let me give a little history of my symptoms/care:
- In July 2015 I was diagnosed with optic neuritis (which was confirmed by an MRI). I was sent to a neurologist to be monitored for MS. An MRI of the brain was normal.
- In October 2015 my hands started to tingle and go numb and I suffered from insomnia. My neurologist said it was carpal tunnel. Also, Vitamin D levels were tested and came back very low (8) and I was advised to start taking vitamin D supplements.
- In January 2016 all symptoms cleared (except for insomnia). I felt good for several months.
- In November 2016 the numbness and tingling came back in my hands - and this time, also my feet and arms. I was also very fatigued. I found a new neurologist who did another an MRI of the brain and spine (both clear) and also had me tested for several conditions that mimic MS. The Anti-DSNA test came back as a low positive. I was referred to a rheumatologist who ran several blood tests that all came up negative (including a second Anti-DSDNA). He said that symptoms were neurological and sent me back to my neurologist. My neurologist said that with a clear MRI, we would need to wait 6 months.
- In January 2017, all tingling/numbness continued, and I also started having shooting pain all over my body. I talked to my nephrologist (I've had medullary sponge kidney since childhood), and he diagnosed Fibromyalgia and started me on amitriptyline.
- In March 2017, all symptoms cleared (including insomnia). I felt good!
- From late April 2017 to now, I have experienced a new wave of fatigue and shooting pains. My sleep is broken again (partially due to the shooting pain). Also, daily - my fingers, lips, and toes turn blue and I get very cold. Two of my fingers go numb on my right hand.
******
I am feeling very low and lost and am hoping that someone here can help shed some light on how to move forward. First, do these symptoms sound familiar? My neurologist keeps pointing at lupus, but the rheumatologist was pretty confident that it is neurological. And then there is my nephrologist, who thinks it is fibro. I'm just lost.
Second, do you think I need to be seen while my symptoms are active? I can't get into my neurologist or rheumatologist until June - is this something I should see my GP for? My main concern is that I need to have it recorded by a medical professional.
Lastly, could having active symptoms change any of the blood tests?
I am due to see my neurologist again in June for another MRI (he has asked that I get them every 6 months). I have also scheduled an appointment (also in June) with a new rheumotologist to get a second opinion. My biggest concern is that I will feel well (or even better) when I see them - causing more delays in a diagnosis.
Thank you very much to anyone who took the time to not only read this post, but to respond. Any advice is greatly appreciated!
- In July 2015 I was diagnosed with optic neuritis (which was confirmed by an MRI). I was sent to a neurologist to be monitored for MS. An MRI of the brain was normal.
- In October 2015 my hands started to tingle and go numb and I suffered from insomnia. My neurologist said it was carpal tunnel. Also, Vitamin D levels were tested and came back very low (8) and I was advised to start taking vitamin D supplements.
- In January 2016 all symptoms cleared (except for insomnia). I felt good for several months.
- In November 2016 the numbness and tingling came back in my hands - and this time, also my feet and arms. I was also very fatigued. I found a new neurologist who did another an MRI of the brain and spine (both clear) and also had me tested for several conditions that mimic MS. The Anti-DSNA test came back as a low positive. I was referred to a rheumatologist who ran several blood tests that all came up negative (including a second Anti-DSDNA). He said that symptoms were neurological and sent me back to my neurologist. My neurologist said that with a clear MRI, we would need to wait 6 months.
- In January 2017, all tingling/numbness continued, and I also started having shooting pain all over my body. I talked to my nephrologist (I've had medullary sponge kidney since childhood), and he diagnosed Fibromyalgia and started me on amitriptyline.
- In March 2017, all symptoms cleared (including insomnia). I felt good!
- From late April 2017 to now, I have experienced a new wave of fatigue and shooting pains. My sleep is broken again (partially due to the shooting pain). Also, daily - my fingers, lips, and toes turn blue and I get very cold. Two of my fingers go numb on my right hand.
******
I am feeling very low and lost and am hoping that someone here can help shed some light on how to move forward. First, do these symptoms sound familiar? My neurologist keeps pointing at lupus, but the rheumatologist was pretty confident that it is neurological. And then there is my nephrologist, who thinks it is fibro. I'm just lost.
Second, do you think I need to be seen while my symptoms are active? I can't get into my neurologist or rheumatologist until June - is this something I should see my GP for? My main concern is that I need to have it recorded by a medical professional.
Lastly, could having active symptoms change any of the blood tests?
I am due to see my neurologist again in June for another MRI (he has asked that I get them every 6 months). I have also scheduled an appointment (also in June) with a new rheumotologist to get a second opinion. My biggest concern is that I will feel well (or even better) when I see them - causing more delays in a diagnosis.
Thank you very much to anyone who took the time to not only read this post, but to respond. Any advice is greatly appreciated!
Check out Raynaud's disease it doesn't explain everything but it is a disease that tends to go along with a lot of other rheumatological or autoimmune disorders. It sounds like it does explain the discoloration in your extremities. I have struggled for a diagnosis for four years still without success. I have all the symptoms of lupus but nothing ever shows up correct in my blood work the common theme with undiagnosed autoimmune disease is the low vitamin D. Although doctors are making progress in this area the factors that they look for or not Guaranteed 2% in the blood work or the symptoms to prevent the same in every patient. My suggestion would be demand MRIS of your affected areas as well as a low-dose course of prednisone. As I said I've struggled with this for years I finally got someone to do MRIs of the joints that I have pain in and have discovered both my hips and my shoulder joints are shot. The rub is my GP ran all of the antibody factors and again I'm completely clear. So it's obvious I have some systemic problem that must be arthritis related but they still can't figure it out. My best suggestion is you really have to push don't let people make you think that it's all in your head just because they can't find the evidence. If you know something is wrong trust your gut do a lot of Internet research and push back with your doctors. The times that you had where you felt really well were periods in between flares most autoimmune disorders have periods where they're dormant but then they're active and that's called a flare. I have not found any correlation between being in the middle of a full-blown flare and the blood work reflecting the factors they look for. There's just so many of these kinds of disorders with and diagnosed autoimmune disease is the low vitamin D. Although doctors are making progress in this area the factors that they look for our not guaranteed to present in the blood work or the symptoms to present the same in every patient. My suggestion would be demand MRI's of your affected areas as well as a low dose course of prednisone. As I said I've struggled with this for years I finally got someone to do MRI's of the joints that I have pain in and have discovered both my hips and my shoulder joints are shot. The rub is my GP ran all of the antibody factors and again I'm completely clear. So it's obvious I have some systemic problem they must be arthritis related but they still can't figure it out. My best suggestion is you really have to push don't let people make you think that it's all in your head just because they can't find the evidence. If you know something is wrong trust your gut do a lot of internet research and push back with your doctors. The times that you had where you felt really well we're. In between flares most autoimmune disorder have periods wear their dormant but then there active and that's called a flare. I have not found any correlation between being in the middle of a float full blown flare and the blood work reflecting the factors they look for. There's just so many of these kinds of disorders the doctors cannot keep up with good diagnosis.
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Sorry for some reason that copied some text and re posted it you need to ask for the low dose course of prednisone when you are in a flare. If it brings you out of the flare then they should continue you on a low dose and see if it prevents any new episodes. Good luck and stay patient because this can be a very long frustrating depressing process make sure your love ones understand and that they are patient with you as well hope it all works out for you
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