January 4, 2013 at 4:30 pm #385
I am seeing my nuero again in a few weeks time. I have had a full spine and head MRI with contrast with a few minor things show up on it, but after reading more of The Driscoll theory, i feel that an MRV and MRA is needed for further investigation.
Can i ask how people have “persueded” their MD’s to look further into just a diagnosis of migraine. I will explain that Diamox has helped which would suggest high pressure issues.
From my enquires i have made about CCSVI i think there are only a few radiologists who know what they are looking at in the UK, and it will have to be done privately.
This maybe a stupid question but a MRV wouldnt show CCSVI would it? From what i can gather this is needs a Doppler scan?
Sorry for questions, just would like to get it straight for my next visit!!!January 13, 2013 at 2:50 pm #3325
Hi Diamondcut, If Diamox has been helpful for you, that should convince your doctors to perform an MRV to look for venous abnormalities and thromboembolisms. Most doctors like to do an MRA also, because those of us with EDS tend to have arterial abnormalities, too. It’s just a smart thing to do. Did you see my last video? I’d recommend that you NOT use the term “CCSVI”. Most doctors will have a knee-jerk closed mind. Instead, they will need to look for venous abnormalities which may be systemic (hence the avoidance of the term “CCSVI” which only refers to stenosed jugular veins and azygous veins). What is critical, is to go to a doctor who can differentiate a stenosed vein as a fibrosed vein or a thromboembolism. We are all prone to having “thick blood” and can develop blood clots very easily. Your doctor will need to image your veins and discern whether the stenosis are actually blood clots (needing immediate treatment) or not. Did you see my video on MTHFR defects? It’s good to be screened for common causes of easy blood clotting. I don’t have any of the “common causes”, yet am on a TON of blood thinners. This treatment has had a hugely positive effect on my condition. So, rather than ask about “CCSVI”, you’ll likely do better to ask about “venous thrombosis”, especially of your head and neck. Sound good? Let us know? Big hug…January 13, 2013 at 3:31 pm #3330
Hi Dr Driscoll
Yes i am with you on the CCSVI, the other week i asked my cardio about it an i saw the flood gates come down lol. I think by saying arterial abnormalities and systemic venous issues will be far easier to put to them!I did see your last vidoe on CCSVI and i get what you are saying totally.
I had my genetics read by 23and me and didnt appear to have blood clotting issues, but i have read a lot of research papaers on thick blood and migraine.The only thing i dont understand if we are prone to blood clotting, how can POTs patients have low blood volume if thats the case? If i take aspirin i get extremely dizzy on standing and i would say thats becuase it thins the blood? Can you have low blood volume but be prone to clotting then?
I have an appointment in about 6 weeks with my neuro so i will let you all know how the (venous thrombosis)goes down lol!!! wish me luck…!January 13, 2013 at 3:41 pm #3332
I wonder if Hughes syndrome has cropped up in many EDS patients? I have read it is common in Lupus.January 13, 2013 at 3:58 pm #3333
Hi Dr Driscoll
The only thing i dont understand if we are prone to blood clotting, how can POTs patients have low blood volume if thats the case? Can you have low blood volume but be prone to clotting then?
GREAT question!! I would like to know how they determine our blood volume. I wonder if they assume a certain blood “thickness” in their calculation, and the results are skewed because of a false assumption? I often wondered if patients who were helped with saline IV’s were actually benefiting from the saline thinning the blood? I don’t have an answer for you, but again, I’d love to know how the calculation for our blood volume is obtained. I think that will give us the answer! 🙂January 13, 2013 at 4:00 pm #3334
I wonder if Hughes syndrome has cropped up in many EDS patients? I have read it is common in Lupus.
YES, YES, YES!!! There is even a Facebook group for EDSers with Hughes Syndrome. Amazingly, it is also very common in M.S., and other “autoimmune” disorders (lupus, as you mentioned is a good example). 😉January 14, 2013 at 3:40 pm #3347
I mentioned Hughes, only becuase i had an online friend with EDS/POTS who had chronic migraine (aswell as other problmes) but she mentioned as i have so many headache issues too, try being tested for it. I put it to the bottom of my list as i pressumed that cant be me i have low blood volume.
Its strange but recently i had the best tests that are avaliable in the UK for blood volume, just had my Renin and Aldosterone checked as well as 24 hour urine metadrenalin and sodium. All were normal, which kind of means now i am not so sure i have low blood volume…..Its all so unpredicatable.
I think a blood test for Hughes Syndrom is well worth checking though. That could make sense with the IV saline, i would guesss that would have an effect on thinning the blood in a more dramatic way than just drinking salt water, else people would just do that. Off to the GP again…..February 1, 2013 at 12:03 am #3383
I think a blood test for Hughes Syndrom is well worth checking though. That could make sense with the IV saline, i would guesss that would have an effect on thinning the blood in a more dramatic way than just drinking salt water, else people would just do that. Off to the GP again…..
Hi Diamondcut, I’m so disappointed in what it takes to get a diagnosis of Hughes…You must have had a clot AND positive results at least twice. Our blood thickening can change over time, so while waiting for a diagnosis, we could easily have a stroke. Jeez. Did you see my MTHFR video? I recommend a comprehensive panel for thrombotic risk. You can also be tested for the most common inherited blood thickening disorders (MTHFR gene, Factor 2, Factor V Leiden, etc). I highly recommend that! 😉
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