NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › External Commuicating Hydrocephalus –video is up! › Reply To: External Commuicating Hydrocephalus –video is up!
I hate it when I prematurely click submit!
I just wanted to say thank you and thank God for you, Dr. D. You do so much to help others and it’s so appreciated!
Thank you! As to your questions — you are a PERFECT person to join in our blood work registry! Please tell me you will! I believe I’ve figured out the link between POTS, metabolic syndrome, pseudo-tumor cerebri and external communicating hydrocephalus, and I think this test will show it, and give us a treatment option. I have a (newly acquired) “frozen shoulder” — the doctor said it is related to metabolic syndrome. Oh, REALLY?! I was just pulling all of this together, and that just compounded the evidence for me.
I’m SO glad you were able to tolerate Diamox! That should offer some support for the doctors who shudder because of sulpha allergies. I work with two doctors who are careful (scratch tests, hospital administration, etc), but whose patients rarely react. Good to hear!
Esophoria or esotropia does NOT occur with age! Heavens. Betcha’ $5 the Diamox will reduce, if not eliminate it. 🙂 Let us know? If you missed it, I chat a bit about my experience with lateral rectus palsy, too in my CCSVI interview. Take a peek? One patient started Diamox, and had episodes of fusion for the first time in years, and she was up to 17 prism diopters (that’s a LOT). So I wouldn’t worry too much about that.
Would you mind putting your doctor’s info on our “good docs” thread? That could be so helpful.
Thanks again, my friend. You made my day.
Dr. D – Wow and to think I almost didn’t post anything! What a great feeling to know that my medical issues would make someone’s day. Boy, my mom will get a kick out of that!
I absolutely will join the blood work registry! I just need to figure out hwo. I’ve had so many tests and have copies of everything that I will be happy to share with whomever or I will go do new tests if necessary. Whatever it takes to help! I’ll also add my family doctor…what a patient saint that man is for putting up with me! He has referred me out to the best specialists in Columbus, OH, but I can’t get them to listen and well, it’s hard to tell someone you think you have serious issues when a lot of your tests APPEAR normal.
So frozen shoulder, huh? Painful! My dad has this, but he is supposedly the non-EDS contributor for me and his is due to diabetes I’m guessing. Looking at your photos, you sure don’t look like the metabolic syndrome type if there can be such a thing! Well, you know it’s all high cholesterol, obesity, etc., as the supposed contributing factors. Have you checked out the study OSU has done on pseudo-tumor cerebri? I was wondering if the findings of the majority of people diagnosed were women around 40 that had experienced recent weight gain just prior to diagnosis, which had them suspecting endocrine system dysfunction of some sort, comes into play with all of this as well. They immediately jump to the conclusion that because I’m a woman and age 41 that I’m their stereotypical finding. They’re actually doing a clinical study and accepting anyone that has 2 family members from the same family with IIH. Sadly, I can’t get anyone else to go through the hassle and heartache I’ve endured to get this far. I’m determined!!!
So, I’m still missing something and can’t find much info on the web, which that’s how we know we’re uh, unique since you can find almost anything on the web. Pseudo-tumor cerebri is just intracranial hypertension or increased cranial pressure? External communicating hydrocephalus is same thing? I looked at my MRI again and it doesn’t look atrophied, but just the opposite. Again, I know exactly squat about how to read MRI’s, but am just comparing. I can’t figure out if my sella or whatever is half empty either and everyone that’s looked at them says I’m completely normal. What a crock! I trust no one.
Interestingly enough, I didn’t have esophoria until I started the Diamox. I’ve been on it for about 2 1/2 months now and I saw a big difference in the first few weeks, but then it was as if the benefits just diminished until I’m right back to swuarre one. In fact, the eye problems, ear pain and drainage in the mornings have gotten worse. Should I be taking a higher dose tnan 500mg daily?? Now I’m angry that my optometrist told me that this was in no way connected to the PTC!!! I have the worst luck with doctors, I swear!!!
Does the link between all these fun things we have require a Driscoll Theory 3? Is the test to prove it a run of the mill test that a famillyl doc could order or will it require a specialist? I’m dying over here! I have a very strong curiosity gene and find all of this fascinating. 🙂
Thanks for responding. You made MY day and continue to do so with all you do. – Jodi