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Lisa
@techi

Posts: 303
Joined: Jun 18, 2017

Headache

Posted by @techi, Nov 16, 2017

I have been having a headache for three days. I can’t take any unsaid. My speech is slurred and dizzy. I told my Dr and the Dr at the Mayo Clinic. I have had so many neurologist and t hey say everything is ok or some will giving diagnoses that are wrong. I mean after you have had viral encephalitis and autoimmune encephalitis but still no answers. Then I am diagnosed with conversion disorder or FRM. And then l can’t see clearly because of the light so now l have to stay in the bed all day. Has anybody gone through the same thing or simillar?

REPLY

@techi Sure, Techi. Has anyone taken a good CT or MRI of our brain, especially around the cerebral cortex area? Mayo did not for me, but the locals did. It showed a growth of amorphous white matter with is a symptom of A-Cys. Also, I am have a really tough time focusing on things now. The little cross-hatch furrows in front of the words on the screen or the page cause me to try to squint to see what is in front of me. This squinting is, I think, the partial cause of my #9 headaches just behind my eyes. This is also a sign of several different mutations of amyloidosis, including hATTR and A-Cys, and some others. Any, how is your Serum FreeLiteChain(c) doing. Lower than 1.4 mg/dL, I hope. And your 24-hr proteinuria? Lower than 0.4 per 24 hours, I hope. Have they checked your ANA? Hopefully it is not out of reference range.

They said l have white matter and the neurologist at the Mayo clinic said it was normal. Now this doesn’t happen to me alot and this is the worst one. I have HE also so l dont know ifb thats what’s going on
But now l am having problems seeing Also the do said l have mild galcoma so it can be that also. So l have a lot of calling to do what are they going to do for you surgery or medicine medicine they will give you

@techi I hope and pray that some of the new meds that attack these things will be on the market soon. I am tired of the headaches, the AFib heart, the A-V block in the heart, the macular skin all over my body, not being able to breathe or urinate naturally, having to cough all the time, the pain, the bruises all over my body……..

@oldkarl

@techi Sure, Techi. Has anyone taken a good CT or MRI of our brain, especially around the cerebral cortex area? Mayo did not for me, but the locals did. It showed a growth of amorphous white matter with is a symptom of A-Cys. Also, I am have a really tough time focusing on things now. The little cross-hatch furrows in front of the words on the screen or the page cause me to try to squint to see what is in front of me. This squinting is, I think, the partial cause of my #9 headaches just behind my eyes. This is also a sign of several different mutations of amyloidosis, including hATTR and A-Cys, and some others. Any, how is your Serum FreeLiteChain(c) doing. Lower than 1.4 mg/dL, I hope. And your 24-hr proteinuria? Lower than 0.4 per 24 hours, I hope. Have they checked your ANA? Hopefully it is not out of reference range.

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Yes they have checked my Ana and it is positive and apparently very high but they don’t think anything is wrong. They said the can’t find any autoimmune problems it could be a residual of autoimmune encephalitis disease l had prior but l do notice sometimes like l am not focusing. It seems very strange.And l never had a headache like this before that l am aware of. My family said when l had,my encephalitis l complained about headaches but l can’t remember that and all the neurologist l have act like they don’t want to bother dealing with what’s happening. So l don’t know if it’s part of a brain issue or a liver problem. And what doctor to turn to but l am blessed l not having anymore memory problems and l think that was all due to medicines so l guess all is good. So l had to take ibuprofen with my epi-pen next to me but l can’t take those all the time due to my liver so the doctors tell me tramadol which l don’t think that’s good either. And they did ct, MRI scans. I squint too but I had to change my glasses and l have mild galcoma and l take drops for that but l noticed with the headaches l was having l couldn’t stand bright lights but that is probably normal when you have had a headache so long. So what are they doing for you? And who is treating you?

@techi Hi, Lisa. Have you had a SERUM FreeLiteChain(c) assay lately? If it is over 1.4, that is probably your problem, Amyloid Cystatin-C or Gelsolin. ACys produces a lot of white matter in the cerebral cortex, just like Alzheimers in other parts of the brain. Also have your urine checked for protein. The easy first sign is foam from protein and air bubbles on your urine in the toilet. And ACys and some others also cause dysphasia in your corneas, making it difficult to focus on anything. It creates little furrows running various directions. There is lots of material at Amyloidosis Foundation, NIH and other sites.

Thank you so much forgive me for not answering i had a an appointment with a new hepatologist but when l went to the neurologist here he told me didn’t l tell you before everything is ok. So today l got a message from the autoimmune encephalitis alliance and they were talking about patient who have along history with encephalitis that had no history of headaches they are finding out that patients can begin having headaches. And it so unfortunate when the patient has to go through it and tries to express their concerns to the doctor and they have no idea what to do or even care. But l will definitely try to get some more test done. I am suppose to see another rheumontologist next week and hopefully he will have some answers or try to find out what they need to do. Thank you so much for the information it truly helps when you have no idea what to do or where to find the answers.

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