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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: When to consider CCSVI?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › CCSVI › When to consider CCSVI? › Reply To: When to consider CCSVI?

February 17, 2012 at 12:22 pm #1745
kamillean
Participant

I don’t have the answers you are looking for…I have the same questions. My daughter’s headaches seemed to go mostly away when she started the Diamox too…then they started creeping back in. She is away at college and stressed now, so I don’t know how the stress and sleep deprivation are effecting the headaches. I still think they are better overall, but she is so exhausted now from the Diamox she can’t seem to tell me exactly how her headaches are (teenager you know). I too have been wondering about the CCSVI. In the Driscoll Theory, Diana says:

If the patient either doesn’t respond to Diamox or achieves a partial reduction of
symptoms, then an fMRI should be encouraged to look for CCSVI (chronic
cerebrospinal venous insufficiency) and angioplasty should be considered if the
fMRI indicates venous blockage or bidirectionality of venous blood flow.

Since your daughter has a partial reduction in symptoms, maybe an fMRI should be done. I tried looking this up myself the other day and couldn’t seem to figure out how to get one of these done. We are from Michigan and I found a refernce to an fMRI machine, but it seemed to be used for research. Maybe they have some in Ohio where you live. I don’t even know what type of doctor to ASK about all of this. I did just make my daughter an appointment at an Allergy place to get tested for Mast Cell disorder. Has your daughter been formally diagnosed with that, or are you just trying the Z/Z treatment like we are?

I wish I had some answers for you. I plan on asking her neurologist about CCSVI, but we don’t go until May.

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