Forum Replies Created
March 21, 2015 at 1:37 pm in reply to: mast cell medication #5403
Gastrocrom is one. Ketitofen is the other most often used prescription.
You can try over-the-counter Zantac, Pepcid, Tagamet, or generics of them. Zantac is taken with the Zyrtec, not instead.January 24, 2015 at 1:37 am in reply to: Connective Tissues (possible EDS), hormones? #5258
I can relate. I recommend you send your MRI to a good Chiari neurosurgeon. They should order another MRI and they are educated about EDS. One possible hormone connection is if you have Empty Sella like many Chiarians. Another is EDS patients have trouble keeping their vitamin D3 levels up. D3 is an extremely important hormone.January 5, 2015 at 1:08 am in reply to: Does this sound like/look like Intracranial Hypertension? MRI images included. #5205
How much Gliacin do you take? I tried Boswellia extract and it doesn’t do anything like Diamox for me, but my dose was low.
I feel “migraine” is what all the doctors say if they know little about IIH, Chiari, etc.
I’m planning to get on Dr Francomano’s waiting list. I don’t know if any other doctors understand EDS, mast cells, IIH, etc to the degree she does.January 3, 2015 at 2:21 pm in reply to: Does this sound like/look like Intracranial Hypertension? MRI images included. #5199
Do what Dr Diana suggests with the fluid, if you have any more fluid come out of your ear. She says to save it and get it tested, to determine if it’s CSF. You only need to save a little of the fluid.
Maybe you are lucky and have no CCI. For CCI have your MRI and symptoms looked at by a neurosurgeon. I wouldn’t believe anyone except a good neurosurgeon who is familiar with CCI.
I would try and get a supine brain MRI first instead of upright MRI.January 3, 2015 at 1:36 pm in reply to: Does this sound like/look like Intracranial Hypertension? MRI images included. #5197
You are at a similar point as I am, trying to convince the doctors of IH, and finding out more about what else is wrong.
You may have Chari 0 if not Chiari 1. Your brainstem does not look completely normal to me. For Chiari, you can get a CINE MRI done or upright MRIs.
Do you have a brain MRI? Look for retroflexed odontoid, excess fluid at the top, areas with not enough space for fluid, empty sella, and other abnormalities. Since you had problems with your neck, look into CCI too.
Because of possible CCI, I would not do most PT until you have a specialist tell you it’s safe for you.December 10, 2014 at 5:33 pm in reply to: New member needing advice please, Dr doesn't believe #5173
You should find a new doctor who will accept that you have EDS. It’s hard for us to find doctors. Most doctors are taught that EDS is very rare and has obvious signs. They don’t have up to date information. Their info is at least 10 years old.December 10, 2014 at 5:29 pm in reply to: Driscoll Theory Question #5172
You will probably have to travel to see a geneticist who is very familiar with EDS diagnosis.December 9, 2014 at 3:19 am in reply to: EDS and Optic Nerve Hypoplasia anyone? (Edited.) #5159
Do you mean optic nerve hypoplasia or brain hypoplasia or some other type?
Hard to believe we can have multiple rare conditions, but we do. The faulty collagen is everywhere 🙁December 7, 2014 at 2:12 am in reply to: Dr Diana, Barbara… or anyone willing to help! #5157
for the first few years I also wore it attached to a body brace, which held most of my upper back fairly rigid too
Do you perchance have any recommendations for upper body bracing, that is not expensive?December 6, 2014 at 2:47 am in reply to: Diamox question #5153
Get regular, not extended release.
Typical start dose is 250mg. Personally l want to start with 125mg. I usually have to take low doses of everything.December 5, 2014 at 4:12 pm in reply to: What could be wrong? #5152
I also have a retroflexed odontoid with a lot of pannus (if I’m interpreting my brain MRI correctly). I have not looked at my c-spine or rest of my spine yet.
(Barbara, I realized today that the MRI image I sent you was not the middle slice. The green circle part you saw seems to be pannus, but the odontoid is only visible in the middle slice.)
I read other posts of Barbara’s about using the hard collar instead of soft. I am feeling like the hard collar could be worse on my out of place neck. I believe when my head is in its usual position, my odontoid and cervical vertebrae are pressing less on my dura. If I use a collar to reposition my head into normal position, it would be pressing more.
Update… decided to order a Philadelphia and see how it feels. I know most others will be too soft.December 5, 2014 at 12:43 am in reply to: What could be wrong? #5151
If it is craniocervical instability (CCI) then it is CRUCIAL that you restrict any action that is going to apply subtle pressure on your brain and brainstem – or your future could be very bleak!
Can I wear a Philadelphia collar with my existing issues? My neck curves the wrong way and the vertebrae don’t line up as they should. A cervical vertebrae is getting close to the spinal cord. This is a hard collar, so won’t it be trying to force my neck into the normal position, which is very unnatural for me? Or will it conform somewhat and give me support for my neck’s usual position? I really want the support. Just checking so I get a collar that works.December 4, 2014 at 7:09 pm in reply to: The Driscoll Theory – book now available! #5150
we can’t do color (without the book being INCREDIBLY expensive). The pictures (and the text, actually) look terrible without color.
If you did not know, some printers can do the book in B+W with only a few pages in color, and they charge color costs for those pages only. Just an idea. The B+W text should look great, or I can’t see how anyone would use them for printing.December 4, 2014 at 5:38 pm in reply to: The Driscoll Theory – book now available! #5146
Makes sense. Peer-reviewed journal articles would, I guess, take much longer. I believe the doctors would be more receptive when they have a zebra in front of them, showing them the material. An abbreviated form for doctors would be great. I guess doctors would respond best to journal article length.December 4, 2014 at 2:03 pm in reply to: What could be wrong? #5141
Thanks. Great article. So you have learned to measure xray/MRI of c-spine like they do. If only more radiologists could be taught do look out for CCI, PTC, Chiari, etc.
That’s scary. I feel like I have to move my neck and let it crack and pop, or be in more pain.
I’m going to try a collar. Sleeping in one sounds hard.
So if I get the 3 positions of MRIs I can know for sure I have CCI. I know I have something where my head feels like a bowling ball like Dr Diana said.