I was told I have IIH beginning of last year. After 8 months for an appointment my optic nerves were no longer inflamed so he sd if he can’t see it he can’t diagnose it and referred me to a regular neurologist. The regular neurologist walks in the room and basically says you have Ehlers Danos Syndrome or EDS. Not sure if hyper or vascular so we are undergoing more genetic testing. Ik I sd I wouldn’t but a constant headache for over a year will make ya rethink that position. Both IIH and EDS are related to MPN’s. There was a study put out that we are born with our MPN that activates later in life. EDS is the same. My neurologist has several patients with ET and PV. Rare diseases linked to a rare cancer. How much luckier can we get…

Ren, I have the same and have been to ER twice with MRIs done. One showed ocular occlusion and the second was mostly normal. I did learn there are several types of MRIs. I had another done this week ordered by ENT and it showed several things with one to include intracranial hypertension. I looked it up and it describes my symptoms very well. It relates to the blood so I wondered about the correlation 🤷🏻‍♀️. I have my hemo/oncologist looking over the report and hope to hear from him soon.

Hi Angela, I agree so much with you. I just found a new neurologist and boy, she is handling things so much different than my last neurologist! I specifically went to her because I have head pressure, dizziness, vision problems, memory lapses and intense pain in the back of my head. I have had so many tests too with no solutions for these symptoms. I have been struggling for over four years with this. She listened to me and then said, lets look at one symptom and then see how this could affect the other areas. So basically she feels I could have inter-cranial hypertension. Instead of doing a spinal tap right now- I had one last year but of course they never checked for pressure- she has me trying a medicine to see what happens. If the symptoms disappear, i have it. And if not, well then we need to investigate more. I cant say just yet if its working as I have taken only two 1/2 pills. My swelling behind my ears is I think less but perhaps that is wishful thinking! Interestingly when i looked up the condition it said this can happen with polycythemia vera. Now I am wondering what my MPN doc will have to say about this new development. I think this is a complicated disease because some of the symptoms are not common and some people are affected so differently from others. Really good question. Thanks for posting!

It’s just strange how each specialist treats us different. My neurologist only ran some labs because I showed up one day with my arms all full of spots from itching and he thought some vitamin deficiency could be causing my brain issues.. when I told him my ET causes itching bad.. 🙄🙄🙄. Otherwise I had at least 8 MRI/MRAs last year still nothing absolute for my brain.

Hi Angela - realised I never wrote back here following the studies I had. MRV all normal so thankfully that showed no issues to date with blood vessels in the head, ie clots etc. Nerve conduction study was interesting, I do have some slight nerve damage detected in extremities (and higher than normal for my age and ethnicity apparently), but not sure if this is due to ET or coincidental. MRI pointed out only a potential pituitary lesion so small enough that it would require another MRI in order to see/detect. Specific blood tests ordered by the neurologist pointed to high prolactin. The neurologist didn’t think the results of the tests would explain my headaches, so that would put me back at the initial starting point of headaches/significant tightness feeling in the head caused by ET…