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MattiesMomParticipant
Suggestions from a non-professional member:
Was this MRI done with contrast? Mine was not, so I am assuming that may be why yours looks different. Can you make a screen shot for more of the profile/ side pictures? In my very unprofessional opinion, looks like your hindbrain looks kind of compressed… but not necessarily below the skull bone, but I can’t tell exactly because you have white areas on your pictures where I do not.
Also, wondering what is going on with your odontenoid… can’t tell from these pictures. It would probably show up better if you attached a few of the side/ profile images.
August 16, 2012 at 4:09 pm in reply to: Did you see the vid about the end of my POTS? Please respond if you're interested in the clinical trials! #2759MattiesMomParticipantYes, just watched the video. I am trying to understand, are you talking about a clinical trial involving CCSVI/ angioplasty for the clinical trial, or something different? P.S. I have pictures of me laying down, where my vein in my neck gets large like yours does in the video.
I am very interested in the clinical trials.
MattiesMomParticipantThere is a fascinating article (written by a mother) about MTHFR in HEDS… if you look up http://www.mthfrheds.com.
MattiesMomParticipantI wish I could participate, but been on Diamox since late April. I am probably going to go off of it soon to get some neuro imaging done.
MattiesMomParticipantMy HEDS daughter was born with a full head of hair, but my niece was bald until after she was 3. She was seriously like completely bald. My niece is 9 and I have asked her to the beighton scale for me, and she is 8/9, just can’t touch palms to the floor.
MattiesMomParticipantMegha,
My daughter often gets the excruciating pain in her legs at night. Dr. Diana speaks about this pain in her video titled “Hypermobility Form of Ehlers Danlos”, may be easier to find on youtube. There is also a member here named Beth who wrote about this type of pain in her EDS kids on her blog (hope she doesn’t mind me posting the link.) Though links don’t work from this forum, so you will have to copy and paste. http://slingsandarrowsofoutrageousfortune.wordpress.com/what-i-wish-i-knew-then/
My daughter had this happen again the night before last. I am getting better at reducing the pain quicker. I give her an over the counter pain reliever and an antihistamine. She is already on a nightly dose of Zyrtec, but I give a her a natural antihistamine called D-Hist when she has this pain and as needed. (D-Hist is made by Orthomolecular and available online, but I get it from our ND’s office.) The D-Hist contains Quecertin, Bromelain, and stinging nettles- all known to naturally reduce histamines.
But this 3rd addition to our leg pain relieving regimen seems to be what helps reduce the pain quickest. I massage Arnicare (Arnica Cream) into her legs where the pain is. We use Boiron brand at get it at our local health food store, but I have seen in at the pharmacy before too. When I massage the Arnica Cream into the painful areas on her legs, the pain subsides in like 10-15 minutes. I still do all 3, the pain reliever, the antihistamine and the cream, but I think the cream has been the best thing we have found to help quickly, so I am sticking to our routine.
Also wanted to tell you that I have POTS and all day pain in my legs. It is a disabling pain. But it is different than the night time only pains that I had as a child. I would wake my mom up in the evenings with this excruciating pain, and the doctors called it growing pains too. Strange thing was, that I was the only one of all my siblings who experienced this awful night time pain.
I can almost predict when it will happen to my daughter. For example, if she tries to walk too far, or keep up with running kids… I will usually say to my husband “I bet her legs will be killing her tonight.” She usually wakes up with this pain or has it right at bedtime. We have only known about the Ehlers-Danlos since March, so before that, her doctor would call it growing pains too, but we always knew there was more to it.
Best wishes
May 7, 2012 at 12:47 am in reply to: I see most have POTS in this forum-Does autonomic neuropathy qualify? #2120MattiesMomParticipantI would definitely think it applies. The authors of this medscape paper say POTS patients seem to suffer from a type of autonomic neuropathy. http://www.medscape.com/viewarticle/717904_5
“These patients seem to suffer from a mild type of autonomic neuropathy; the peripheral vessels cannot constrict when there is orthostatic stress. In many patients symptoms start abruptly following viral infections, trauma, surgery and after pregnancy. Serum auto-antibodies to alpha-3-acetylcholine receptors of the peripheral ganglia have been detected in some patients with a post-viral presentation. In some cases, there is a hyperadrenergic state[8] leading to increased noradrenaline due to impaired clearance or decreased uptake of noradrenaline by the synaptic cleft. These patients suffer from profuse sweating, anxiety, tremulousness, tachycardia and high blood pressure. This variety usually runs in families and is thought to be due to an underlying genetic disorder. The secondary form of the disorder is seen in conditions associated with autonomic neuropathy, e.g. diabetes mellitus or amyloidosis, and in conditions that may be associated with intrinsic abnormalities in capacitance vessels, e.g. hypermobility syndromes. In other conditions the underlying pathogenesis is less clear, e.g. Sjögren’s syndrome.”
MattiesMomParticipantThanks Palomino, Makes me feel much better. I have major cognitive issues myself, and sometimes can’t get out what I want to say in the right words, so I truly thought I need to just not type on forums because I don’t get my point across correctly. I am glad we are good now. 🙂
MattiesMomParticipant@PalominoMorgan, When I originally chimed in, it was because I was trying to accept your “welcome”. Now I am afraid to speak here on the this (pretty ill) forum because I fear you or someone else may interpret what I say the completely wrong way. That really bums me out. :/
MattiesMomParticipantI wasn’t referring to your opinion or politics here. I was talking about threads on Inspire, and I was in agreement with you. I was sad to see people treating Dr. D harshly (on Inspire). I was referring to their politics (on Inspire), trying to hush her from spreading awareness. I saw several threads (a mast cell thread), the thread you started to get Dr. D to speak at the EDNF conference, etc. I was shocked that people were accusing anyone of trying to “steal” people to her forum, etc. I was shocked that people were saying that she shouldn’t speak at the conference or discounted her theory because she is an optometrist etc. I was saying I was sad to read things like that because I admire her and her research. I followed those entire threads, and I did feel it became political. (On Inspire)
Wow, I think you took what I said wrong. Maybe you should re-read my post.
I was not talking about this forum. I said I prefer to hang out here, as opposed to Inspire.
MattiesMomParticipantI was kind of shocked by some things that seemed very harsh going on over there. I am new to all of this, trying to get information, and I was glad to have another forum that Dr. Diana was reaching out on. Now, I am sad with what I read on threads, and realize there are politics even in these small online communities. I was sad that Dr. Diana left. Her threads were the best. I haven’t removed myself from that forum, but I certainly prefer to hang out here where the info seems most relevant to me and my daughter. 🙂
MattiesMomParticipantBeth, I hope your daughter recovers quickly from her surgery. I am glad to have found Dr. Diana and her research, I believe from your blog that I was fortunate to have stumbled upon. 😉
I depend on Diamox now, and my Z/Z combo. I have had days where I had to cut back on Diamox, (I was taking it more than originally prescribed, so pharmacy wouldn’t refill early, but we have sorted that out) and I realized just how much more miserable I was without it.
I NEED hope in my life, for both myself and my especially my daughter.
I feel like I am one of the lucky ones to be here now, to benefit from Dr. Diana’s knowledge and her willingness to share it with others.
MattiesMomParticipantHere is the 5-MTHF 1mg that we both take. (Teeny capsules.) I buy it from my ND’s office because it is across the street from my home. 🙂 http://www.amazon.com/Thorne-Research-5-MTHF-5-Methyltetrahydrofolate-1mg/dp/B001PLESO2 P.S. Looks like the links do work above.
I am curious to see if anyone else chimes in on this discussion, as I didn’t link the MTHFR to EDS yet. I am still a newbie here. 🙂
MattiesMomParticipantI don’t tell you this to scare you, just to share info. It is a hot topic in autism right now, as it is being linked to autism in some, I believe due to the inability to properly detox. It’s mentioned in the bottom of this abstract. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2610366/ “Differences in allele frequency and/or significant gene-gene interactions were found for relevant genes encoding the reduced folate carrier (RFC 80G>A), transcobalamin II (TCN2 776G>C), catechol-O-methyltransferase (COMT 472G>A), methylenetetrahydrofolate reductase (MTHFR 677C>T and 1298A>C), and GST M1. We propose that an increased vulnerability to oxidative stress (endogenous or environmental) may contribute to the development and clinical manifestations of autism.” Another pubmed article http://www.ncbi.nlm.nih.gov/pubmed/19440165 “Results: MTHFR 677T-allele frequency was found to be higher in autistic children compared with nonautistic children (16.3 vs. 6.5%) with 2.79-fold increased risk for autism [95% confidence interval (CI): 1.58-4.93] Conclusion: MTHFR C677T is a risk factor, whereas MTRR A66G and SHMT C1420T polymorphisms reduce risk for autism. MTHFR A1298C acts additively in increasing the risk for autism.” Here is another discussion about it. http://heal-thyself.ning.com/forum/topics/mthfr-c677t-folate I know I have more articles and info saved on my other computer if you are interested I could get you some links. You will have to copy and paste links because they don’t work from this forum.
MattiesMomParticipantDo you supplement her at all? 5-MTHF (methyltetrahydrofolate) is the type of folate (activated folic acid) that should be supplemented for MTHFR per my integrative naturopath doctor. Both my daughter and I are suspected to have MTHFR due to our midline defects, so we both supplement. I honestly don’t know a whole lot about it. What I do know is that regular folic acid is not absorbed properly, so the special folate is absorbed so you can help to avoid problems. I believe methyl B12 should be supplemented as well. We were supposed to get tested, but got sidetracked by our EDS and my POTS diagnosis. Our ND did tell me that the supplement is all that she would add even if we were positive, and we are already on it. I do remember her telling me that people with MTHFR defect sometimes have a hard time with the methylation (detox) pathway if burdened with heavy metals, etc. We already had previous lab work that showed we both were having methylation problems.
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