Im posting this question for my friend who has sarcoidosis. But doesnt know much about it, and neither do the doctor who is treating him for it.
Recently my friend was complaining of funny headaches, and a foggy head, His consultant sent him for an MRI Brain scan, which found flashing images.
The consultant is stuck on this , and doesnt know what it is.
Any help would be appreciated.
Good luck in your new group
Neurosarcoidosis generally manifests as facial palsy and an MRI typically shows granulomas (cyst-like masses) in the brain and/or spinal cord. Eye symptoms can read on an MRI as well, which will show up as optic nerve swelling. I haven't read anything so far about flashing images in an MRI and would attribute that more to brain function and a possible chemical factor than something relating to sarcoidosis, which is categorized as more of an inflammatory autoimmune disease. Which type of sarcoidosis was he diagnosed with? If he hasn't been given a "type" yet, how did they figure out that he had it? It generally shows up in the lungs, heart, spleen, brain and/or lymph nodes. A biopsy is the most fail proof way to diagnose it and they're generally reluctant to do that when the granulomas are in the brain. Is this the first bout of neural symptoms that he's had? The foggy head sounds about right but that doesn't necessarily mean that he has the neural type. Sarcoid does a very good job of leaching the vast majority of clarity and energy from a person without originating in the brain. Headaches can be a factor due to the granulomas, but they would have seen that immediately in a scan.
I'm sorry I couldn't be of more help but in this case, I don't think one has anything to do with the other. That is the frustrating thing about sarcoidosis though... there just isn't enough research being done and doctors, for the most part, are pretty clueless. Tell your friend that his best bet is to do research on his own and compile a list of articles that relate to his particular situation... then give them to his doctors and have them sort through it and develop a treatment plan. I'd be happy to supply him with a few websites that have been helpful for me if he would like. And, of course, you're welcome to ask any questions you like here.
Thank you for answering my post.
My friend was diagnosed a few years ago with sarcoidosis, after they found some granulomas in is lungs,
He sees a lung specialist only once a year, and he doesnt know much about the condition.
He is currently not on any treatment for his condition. But steroids have been mentioned.
Nobody knows what the flashes are in the brain scan, but he also suffers from pressure in his eyes, so this may be related? but wo knows?
My friend wanted me to ask you , can this cause,a hoarse voice, and swallowing problems?
The doctors were we are from in the UK, dont seem to know much on this condition, and also dont seem bothered about it also, or its consiquences.
That any information you could supply would be appreciated very much.
I am also wishing you the best in your forum.
Treatment for sarcoid is generally not done unless the risks to his life are greater than the side effects from the treatment. Prednisone is most commonly prescribed as a "first response" treatment to sarcoid, and it is not fun to be on at all. I'm experiencing just about all of the side effects and none of them are terribly easy to deal with. If his sarcoid isn't bad enough to justify living with the Prednisone side effects, they won't treat it. Honestly, this is good news for him. That being said, sarcoidosis can be life threatening. The granulomas can do irreparable damage to his lungs if left unchecked. If he beings experiencing decreased lung capacity and/or a shortness of breath of any degree... he should demand that his doctors do a CT to assess the damage. They should be able to compare it to his previous scans to determine whether or not the sarcoid is getting worse. If it is, he should get treatment immediately.
Eye pressure definitely can be an issue with sarcoidosis. Specifically, it's a swelling of the eye called uveitus and it was one of my symptoms so I'm pretty familiar. It would be in his best interests to go to an ophthalmologist to monitor the disease from that standpoint as it can cause blindness if left untreated. I almost lost vision in my left eye because of it. They will dilate his eyes to get a closer look at his optic nerve to determine whether treatment is necessary. If so, prednesolone drops (or something similar) can be prescribed to reduce the swelling. Yearly check-ups are recommended after the swelling goes down. If he starts seeing massive amounts of floaty specks (these aren't "floaters", they're white blood cells) in his vision or starts losing his ability to focus, he should get to a doctor ASAP.
The hoarse voice and swallowing problems can be sarcoid issues as well. This occurs generally when the lymph nodes are involved (as mine are). They can swell around the larynx, esophagus and wind pipe, causing complications with each. My voice isn't hoarse, but I've lost the ability to sing like I used to. I sound like crap now, which I thought was weird and I hope goes away eventually. I don't have problems swallowing, but I've read that it can be a problem sometimes.
Regarding his doctors... that doesn't surprise me. I'm pretty lucky in that aspect. My doctors seem pretty concerned about this and are doing everything they can to make sure I'm taken care of. This disease is something that should be taken seriously. While some people are lucky enough to never develop symptoms they notice, there are a fair few too many who die from it. Bernie Mac for instance. His official cause of death was pneumonia but the underlying issue was pulmonary sarcoidosis. Even the doctors in the US don't have the kind of information on this that they should. My rhuematologist doesn't always agree with my pulmonologist and my cardiologist is just happy my PVC's are benign. It ends up being an issue of "what school of thought do you subscribe to" versus "what is the accurate information for today".
The best thing he can do is educate himself and force his doctors to do the same. I know that sounds backwards, but that's the case. Here are a few sites I found helpful.
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