This Is MS Multiple Sclerosis Knowledge & Support Community

scared, I have no definite solution/answers to what your condition might be, but I will say that when I experienced these symptoms that you describe, to outsiders it did appear like anxiety and felt very scary...I recently started b complex ( without b5) and biotin (very calming) it seems to be help...

Hi Bethr, was thinking 'bout this chronic hypoxia...and the impact that smoking would have ( congrats, by the way) Do you feel quitting has been a big plus in this? I, too have smoked many years and hate admitting it since it has such a negative stigma attached!

Hi Bethr, glad you stopped in....I was in hospital a week ago...dehydrated, vomiting (never do that) pain,pain...know it was porph attack...stopped after they started iv, went home, drank fluids, ate carbs, started quinine...did test...neg!! further test in lab, will get results in a week. I never w...

Bethr, thought I'd ask your opinion, if I can....I have been stuck with this undxed since I was 28...wonder if I actually got proper treatment at this late date,do you think it may still be reversible? been livivg out of w/chair for 10 yrs...Is it too late for recovery? Have you heard of other's bei...

Bethr.. my older sister had to have liver transplant...they never tested for hh. younger sis and older and younger brothers are being phlebbed regularly and doing so much better! mother is carrier h63d, I am convinced she also has porph. hmmmm....then for me, I get the ms label? Can your brother con...

''You are going to use "butterfly rigs" so I assume you mean you are going to draw your own blood. Need not tell you this might be risky for infection, but I was wondering, do all those draws not result in a very scarred vein on the inside of your arm?..'' 1 eye, I see no other way to help...

Nice to hear you're doing ok Bethr! Long haul for you too, I think. I'm hoping to get butterfly rigs thru mail and arrange low volume plebs...I simply don't buy that my whole family has hh but I have MS? not. we'll see...stay in touch here, k?

Hey Bethr! wonder how you're doing? Still doing the phlebs? I'm still fighting for mine...Since I was last here my younger brother, sister and mother tested pos for the genes c282y/h63d...but not me...go figure...I'm hurting bad now, and so need a blood draw..If my test was really neg, they're sure ...

Hi dear, believe the worst part of this is we want a reason ...I sure did, two small kids,told ms...no cause no cure...geez..I was 28, I tried to hide it too...spent all these years looking /researching...I'm 58 now and my siblings and mother have just been diagnosed (because of that research) as ei...

haemochromatosis (iron overload) /porphyria all involve HFE gene mutation, hereditary....high liver enzymes, damage to liver from iron , damage to brain, pancreas,heart,lungs, thyroid,adrenals etc. etc. all caused by faulty iron metabolism....trtmnt is blood draws/loss from surgery ( a little radica...

Dr. Sclafani, Thank you for your invaluable expertise and generosity in the sharing of it. You mentioned followup being taken care of in canada.I was treated in san diego on sept 28 and will seek followup in the next months.I am in BC..and wonder if you have a suggestion for followup close by? thank...

San Diego..Hubbard Foundation?

ME TOO $1000.( but reserve the right to bitch)

procedures show to be overwhelmingly effective.... I wish this had applied to drug trials..it didn't...most were proved innefective or risky..and 'fast tracked' anyway...none have ever been shown ''overwhelmingly'' effective and weren't ever required to be...can u say double standard? There has to b...

Shye, Bethr has more info on porphyria ...she has been diagnosed. I'm just spouting what I think and hoping I'll still be here to watch the s...hit the fan.( that worked out well didn't it) lol