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Sarcoidosis vs MS on mrMRI
I was hoping you could help me differentiate or show resemblence between diseases. My brother and I had swollen lymph nodes for a few years-both had surgically excised whole and biopsied. Both diagnosed with sarcoidosis based on a report of necrotizing epithelial granulomas indicating sarcoids-(non-lung involvement) and did see intensivist to rule out the other 30 or so things(infection,lupus,ana,etc.etc.), I also have menierre's and raynauds which both are managed with just life modification. The only symptoms my brother and I have is that we both agree there seems to be a pattern of re-occurrent extreme tiredness lasting about a week and all of a sudden he and I are both developing new allergies-me cleaners and latex, him food to wear we have both experienced anaphylaxis and carry epi-pens. My question and concern comes from my aunt. The past couple years she had seen a neurologist for intermitent vision changes and we kinda at first thought she was exageratting but she is having lots of symtoms of parasthesia, vision loss/floaters, says she gets this rush of a numb feeling in her head, intermitent muscle weakness and involuntary jerky reflexes. Numerous of episodes of severe dizziness with syncope, some facial muscle weakness that is intermitent. She has had two MRI's with what was described to her as white spots resembling signs of MS and demyelination. During the past two years she had also had two episodes where she had clots to her. I have insisted to her she should go to an intensivist or a larger hospital neurologist. Given that there is a family history of sarcoids how closely can the two diseases resemble each other. another reason I worry of sarcoids is the possibility of cardiac sarcoids causing her syncope or is there a connection of MS with cardiac symptoms. The other reason I mentioned my brother and my symptoms was that I thought maybe it could be helpful if they would be anything that seems to go with one or another. She is only in her forties so I am hoping with education I can help her to see that while she doesn't want to feel like she is abandoning her family M.D. that so much more could be done? We live below Columbus, Ohio is there physicians there you could recommend. This is absolutely wonderful that you do this, Thank you!
Hi jim2dandy,
I also have neuro-sarcoidosis (no lung-involvement). Interesting that you should mention swollen lymph nodes. Mine have been swollen since end 2005, and the sarcoidosis symptoms started August 2006. (Also had one biopsied last year, and given the all-clear.)
X-rays and MRI's don't show anything, but an MRI with contrast showed nerve-thickening and nodules forming at the ends of the nerves of the cauda aquina.
I find it strange that both you and your brother have been diagnosed with the same thing, as my mom has similar symptoms and my neurologist said that it's unlikely that she would also have the same thing. I will admit that my mom has other mechanical spinal problems, but I find it strange that she also has that 'delayed walking' thing. Do you also have trouble walking immediately, after having sat for about half an hour?
I've had so many varied symptoms, but most of them have disappeared. Only this delayed walking comes and goes regularly.
The doctors don't know what causes sarcoidosis, but I'm wondering if it cannot perhaps be a viral infection, making it possible that people of the same physical vicinity might contract it? I don't know.
I have a real problem with inflammation (always have) and have done a lot of reading about the subject. They say it is actually the cause of many serious diseases, as it can actually cause things like high cholestrol. This book I read also said that things like aerosols and room-freshners - oh, and pollution etc. can also cause inflammation. Strangely enough, my oldest brother and I have both 'inherited' a rubber (latex, silicone) allergy from my mom.
I've found that when I manage to keep my inflammation in check, my body is intirely more dependable and most of the symptoms disappear/are a lot better.
I wonder if inflammation is not an auto-immune response, and that sarcoidosis may be triggered by a viral infection?
Do you have a problem with inflammation?
Last year I had a spinal tap, which showed high levels of protein. But who would have known what would happen next! The spinal fluid either didn't replenish, or the tiny pinprick where the needle went in, would not heal. I was down for almost two weeks. If I lifted my head, I got severe headache, as the brain would rest on the skull, instead of the usual fluid. Halfway through the two weeks, as I was sleeping one night and turned over to my right - while dreaming - the room started spinning! It's the most horrible feeling! Every time you tilt your head at a certain angle, if your eyes are open, the room spins past you. I then also started vomitting and got severely dehydrated, so that I was re-admitted to hospital twice more.
It sounds a lot like Menniere's, doesn't it? I was diagnosed with an inner-ear infection.
All this spinning lasted for 3 months.
To: faithtbo
I also had eye symptoms during those 3 months. When I lay in the dark with my eyes shut for a few minutes and then opened them, I saw lightning flashes. That's usually a symptom of retinal detachment, so had an eye specialist check it out. He said it was only a type of migraine, caused by the pressure on the nerve. I also struggled to open my right eye in the morning as I wakened - but: these symptoms also cleared up.
Isn't floaters a thing of getting older?
The most hopeful thing that I've read (and heared), is that sarcoidosis heals by itself. It can take anything from 18 to 36 months. It's been 26 months for me now, but almost all of the symptoms have disappeared. It's only the small insignificant little things that are left, and I have hope that they too will completely disappear. At least the big symptoms are gone, such as walking and not being able to stop. People laugh when they hear that, but let me tell you, it's really scary if you see a car coming, and you can't stop...
Sorry to have bent your ears ;-)
Good luck for your recovery, I know this whole process can be like mourning a big loss. How far are you through the process?
I also have neuro-sarcoidosis (no lung-involvement). Interesting that you should mention swollen lymph nodes. Mine have been swollen since end 2005, and the sarcoidosis symptoms started August 2006. (Also had one biopsied last year, and given the all-clear.)
X-rays and MRI's don't show anything, but an MRI with contrast showed nerve-thickening and nodules forming at the ends of the nerves of the cauda aquina.
I find it strange that both you and your brother have been diagnosed with the same thing, as my mom has similar symptoms and my neurologist said that it's unlikely that she would also have the same thing. I will admit that my mom has other mechanical spinal problems, but I find it strange that she also has that 'delayed walking' thing. Do you also have trouble walking immediately, after having sat for about half an hour?
I've had so many varied symptoms, but most of them have disappeared. Only this delayed walking comes and goes regularly.
The doctors don't know what causes sarcoidosis, but I'm wondering if it cannot perhaps be a viral infection, making it possible that people of the same physical vicinity might contract it? I don't know.
I have a real problem with inflammation (always have) and have done a lot of reading about the subject. They say it is actually the cause of many serious diseases, as it can actually cause things like high cholestrol. This book I read also said that things like aerosols and room-freshners - oh, and pollution etc. can also cause inflammation. Strangely enough, my oldest brother and I have both 'inherited' a rubber (latex, silicone) allergy from my mom.
I've found that when I manage to keep my inflammation in check, my body is intirely more dependable and most of the symptoms disappear/are a lot better.
I wonder if inflammation is not an auto-immune response, and that sarcoidosis may be triggered by a viral infection?
Do you have a problem with inflammation?
Last year I had a spinal tap, which showed high levels of protein. But who would have known what would happen next! The spinal fluid either didn't replenish, or the tiny pinprick where the needle went in, would not heal. I was down for almost two weeks. If I lifted my head, I got severe headache, as the brain would rest on the skull, instead of the usual fluid. Halfway through the two weeks, as I was sleeping one night and turned over to my right - while dreaming - the room started spinning! It's the most horrible feeling! Every time you tilt your head at a certain angle, if your eyes are open, the room spins past you. I then also started vomitting and got severely dehydrated, so that I was re-admitted to hospital twice more.
It sounds a lot like Menniere's, doesn't it? I was diagnosed with an inner-ear infection.
All this spinning lasted for 3 months.
To: faithtbo
I also had eye symptoms during those 3 months. When I lay in the dark with my eyes shut for a few minutes and then opened them, I saw lightning flashes. That's usually a symptom of retinal detachment, so had an eye specialist check it out. He said it was only a type of migraine, caused by the pressure on the nerve. I also struggled to open my right eye in the morning as I wakened - but: these symptoms also cleared up.
Isn't floaters a thing of getting older?
The most hopeful thing that I've read (and heared), is that sarcoidosis heals by itself. It can take anything from 18 to 36 months. It's been 26 months for me now, but almost all of the symptoms have disappeared. It's only the small insignificant little things that are left, and I have hope that they too will completely disappear. At least the big symptoms are gone, such as walking and not being able to stop. People laugh when they hear that, but let me tell you, it's really scary if you see a car coming, and you can't stop...
Sorry to have bent your ears ;-)
Good luck for your recovery, I know this whole process can be like mourning a big loss. How far are you through the process?
Did you receive an answer to your questions? I too have sarcoidosis; however, I have pulmonary with cranial neuropathy. I have a droopy eyelid and they have found white spots on my brain MRI as well. Although I believe it is part of the sarcoid Tomorrow I am being tested for Raynaud's. Do you know if that is common among sarcoid patients? What was determined?
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