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PalominoMorganParticipant
Yes, VERY familiar with tethered cord. Dx’d with it. Suppose to be scheduling surgery. No insurance now though.
I find a great way to share pics is by using tinypic.com. They then give you links you can post to the image so that it’s just that Mage on a web page. If the file is small enough you can also attach it to your posts, but you’d probably have to shrink the image too much.
My mom was an X-ray and CT tech. I like to think I got some of her knack for reading images. I am self taught and earning my M.D. Thru the school of hard knocks. So far I have done residencies in neurology, chiari and brain malformations, spinal issues, hip dysplasia, scleroderma and other autoimmune diseases like lupus and Mastocytosis. Also well versed in connective tissue disorders.
I have all “normal” reports from local drs, yet when I went to experts they all agreed with my reads. Not bad for a “patient”.
I will post mine from the computer in a little bit.
PalominoMorganParticipantMy physical therapist saw my MRI and said “WOW! You sure have a long tail! Does it hurt to sit? It should.”
With no other frame of reference what do you say to that?
Oh, and as for diagnostics ever being “way off”… don’t hold your breath. So much comes back normal (as read by1 person) its not even funny. That’s why so much credence is give to symptoms for us. Imaging and tests are often out of proportion to the trouble being caused.
Do you have a lumbar and sacral image you could share? You have me curious now. If you show me yours I’ll show you mine. 🙂
May 27, 2012 at 3:26 pm in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2230PalominoMorganParticipantThe migraine is your brain’s way of saying “what’s with the pressure? I thought we were working on this.”. Forgetting the night dose is HELL.
PalominoMorganParticipantYup. EDS and TC and chiari are more related than in the general public. Chiari in EDS has a 1 in 15 correlation. MUCH higher than the general population.
PalominoMorganParticipantThis is only what my dr prescribed for me! Not medical advice. I am on Zantac 150 twice a day. I take 10mg Zyrtec twice a day too.
PalominoMorganParticipantI get double vision in one eye. Worst in the mornings when I first wake up or when I get a migraine (late in the day). I suspect mine are from CSF pressure spikes which cause my brain to go further out of my noggin, stretching the cranial nerves affecting the eyes.
PalominoMorganParticipantNot sure. Not always lots of research about EDS, but I wouldn’t be surprised. Our eyes are connective tissue mostly.
PalominoMorganParticipantNot uncommon to have EDS and not be freakishly hypermobile. It is a mistake many novice docs make too.
That being said, you may be more hypermobile than you realize in some joints. I don’t look like a circus freak, but have had many “in the know” docs, such as Francomano, say I was pretty hypermobile. I looked up normal range of motions at one point. The best link was thru Livestrong. I was SHOCKED at how restrictive normal ranges of motion actually are.
PalominoMorganParticipantDon’t worry about getting banned here. I left Expired for similar reasons. Nobody is willing to have an honest discussion about so many topics that it does get very frustrating.
As for the EDNF board… Let’s just say I’m NOT surprised. There are some (well, at least 1) very vocal anti-Driscoll Board member. God forbid someone else discover something that might help us. People are too concerned about their own egos to truly see who they are hurting…. us.
PalominoMorganParticipantWish I could chime in. Nobody here seems capable of doing that blood draw. I believe I have HPOTS too.
PalominoMorganParticipantNope, MM. Feel free. The mistake was all mine. I read “over there” as “over here”. Stupid cognitive issues. SO SORRY! I knew my brain was off, but that was bad. I did re read your post several times, but it didn’t sink in.
PalominoMorganParticipantI have always had floaters but last Feb in 2011 I had a searing pain go thru my left eye. Turned out it was a big ole vitreous detachment. I was 34 at the time. I have just learned to live with my floaters.
PalominoMorganParticipantWell, I am wondering what politics you are referring to. I simply gave my opinion here. I’m sorry if you feels that is a “political” agenda. I have been around long enough to see the game that is being played and who is on what side. I don’t discuss that though because THAT would be a nightmare.
The point was to welcome folks here and to let you know we can have honest, frank discussions about things as we see fit. There is no big brother here. Big brother I’d Dr. D here. So, please feel free to share openly.
PalominoMorganParticipantApril 28, 2012 at 8:47 pm in reply to: palpilledema anyone? Also does anyones eye pressures test high first when they first get checked? then go down the longer they sit in the Dr Office? #2073PalominoMorganParticipantHad to look up this. Interesting as it seems related to intercranial hypertension. If Dr. d has time she may chime in here since eyes are her specialty.
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