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January 13, 2015 at 7:39 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #5213MJParticipant
Hi Barbara.
The empty sella…is that just the curved part your red line points to?
What about the bright spot just yo the right of that?
My MRI has an extremely bright white spot there.
Do you know what that is?
Is it related to the empty sella, or something different?Thanks, MJ
PS I just found a hard bump behind my right ear, and when I press on it the entire right side of my head kills with lots of pressure, and severe pain travels down the back of my neck on that side. Also, lots of pain surrounding my entire ear area when I press on it. Any ideas?
MJParticipantHi SoShonika.
Welcome! And thank you for your input. I do not have the pain at the moment, but if it comes back I will look into everything you suggested.
Thanks,
MJMJParticipantI have similar questions, as the Coke *really* throws me off!!! I can toss out guesses all day long, but honestly, I see some imaging in your future! BTW, “usually” suspected clots should be evaluated fairly urgently because the window for treatment is so narrow. Veeeeeeerrrry interesting! 😉
Okay, well I literally just got home from getting my ankle and foot x-rayed. I guess depending on the results, perhaps an ultrasound or MRI is next?
Dr. Diana, I have a rheumatologist willing to send me for whatever testing I need. Can you please help me? He wants angiograms of my brain and heart. What do I need to test for CCSVI? Angiogram of neck? Please advise of any testing you think I should get. Many thanks.
My GP has no knowledge of EDS. She is trying her best and reading up on it. Can she email you through the medical professional part of your contacts?
MJParticipantDo you have any muscle problems as well?
My muscles work well, but I am having a lot of pain from simple things, particularly in my shoulders, but other areas as well. For instance, and I am sure a lot of people can relate, I have to lay on my Tempur-pedic adjustable bed to brush my teeth. I put it in a position comfortable for my neck. I even use an electric toothbrush, but my arm and shoulder are so sore just holding up the toothbrush!!!
MJParticipantHi Raisul. Glad I could help. Keep in touch.
MJ
MJParticipantOk, thanks Dr. Diana. No one would give me DIAMOX before, but I can try again…I also have a video of my pupils dilating in and out, when I have my symptoms in the evening. To me, evening symptoms and pupils suggest Hydrocephalous…
April 26, 2014 at 4:18 pm in reply to: SEVERE EPISODE OF SINUS PRESSURE, NAUSEA, WEAKNESS, ETC. #5003MJParticipantOh wow…good that you got it on video! So what was happening for you? Was it Hydrocephalous related? Or did it have to do with your angioplasty? Was Hydrocephalous causing POTS for you? BTW, I could TOTALLY hear the squishy noise in your ears!!!
I don’t get squishy ear sounds, but I ALWAYS have ‘crackling’ at base of skull/ neck when I move my head – eg tilt back, turn to side; anything. DO YOU THINK MY EPISODE WAS HYDROCEPHALOUS?
I have high BP with POTS, rather than low – but I do get low too, and I know you have the high BP if I remember correctly, and I am just wondering if the high BP and pots could be caused by hydrocephalus?
I want to come to the states to get an upright MRI – my horizontal MRI doesn’t show much, and I am pretty sure about Hydrocephalous, and very sure of CCI. Should I get an upright MRA as well? Where should I go?
MJParticipantFinding more strange patches of skin when I look closely…
MJParticipantHi Barbara. Yes, they automatically did it. They are a cardio rehab and have many POTS patients. I did mention it, but they were going to do it anyway!
MJ
MJParticipantI just went to a cardiologist today bc of a bad POTS flare-up since the weekend. My heart rate is in the 140s on standing from resting of about 60 to 70. I can only stand up for a few seconds because of the pots and Syncope. I can walk-it is very difficult, but much easier than just standing there.
I just wanted to let you know Dr. Diana that I showed my cardiologist the neck vein pictures today. She said it was because I was skinny. I could not be more annoyed. She also said she could not do anything to help me with the severe POTS flare-up. Just water and salt – as if…
But the good news is with this flareup, I had cardiopulmonary testing on Monday, and now I finally have concrete documentation that I do have dysautonomia and pots. Everything was recorded on ECG standing, sitting standing and sitting again. I did not have pots the day of my tilt table test, but this proves it – they will be sending the electrophysiologist a copy of the results. I couldn’t be more happy because no one believed me about the pots. So as annoyed as I am with the medical system, hang in there everyone! Two years ago I was not diagnosed with anything…since then I have been officially diagnosed with EDS, VVS, increased intrinsic heart rate, and now I will have the diagnosis of pots and dysautonomia once the specialist receives the report.
OH, APRIL 24 – RHEUMATOLOGIST-HOPEFULLY TESTING FOR DERMATOMYOSITIS AND SYSTEMIC SCLEROSIS!!!!! WILL POST IT ONCE I HAVE THE RESULTS…
MJParticipantHi Dino68. Thanks for sharing. Unfortunately I don’t have any answers yet. If you and your mom figure anything out, please let me know. I will do the same…
MJ
MJParticipantI do have a similar patch of skin on my right cheek, it is just less prominent. I have now noticed the same thing on my chest. It was the same colour as the skin patch on my cheek, but yesterday it was red – I will attatch a pic. Today it is back to same colour as cheek.
The first pic has a small vertical red line right in the middle of the front of my neck. This happens after an intense stinging feeling there. The second pic shows the patch of skin on cheek and chest. Third pic is close-up patch on chest.
MJParticipantI don’t have a bloody nose, but every day for at least two weeks, I have to blow my nose and there is blood in it. It is worse on the left side. I have no idea if this is related or not-but it does seem to be about the same timing as this patch of skin on my face.
MJParticipantI will try, but I have shown my doctor and all of the specialists I have seen pictures of my distended neck vein (and lots of other pics). No one has done anything to help me. Oh, and I asked the neurosurgeon if that MRI pics could be a vein with two giant aneurysms [not sure if you remember this], he said it could be, but to ask a radiologist…I don’t see an option here to attach pics, or I would attack neck vein and MRI pic…
MJParticipantI noticed it about two weeks ago… But I guess it could’ve been there longer. It is not rough and scaly, but it does feel like a slightly different texture-feels a little softer than the rest of my skin. It has been here for at least two weeks solid ( since I first noticed it). Yes, a strange place-but I am not surprised it is on the left side of my body. The rash, red hands, vein distention, etc. is always much worse on the left side of my body. My left hand and my left foot are always more red, more hot and have more vein distention etc.
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