Phlebotomy anyone?

[Bethr]

Well, the good news is I got another blood test, and I feel wonderful again! I was a bit too high yesterday, it's almost eurphoric. The joint pain has gone, just a bit stiff this morning. I don't think it's going to last, but I'm enjoying it while I can.

My Doctor is coming around a bit now. She's hesitant to send me for phlebs straight away, and is sending me to a rheumatologist instead

I have my appointment in about 12 days time. So a blood test will suffice. I'm heading out to landscape a new garden this morning while I have the energy. It may help with my diagnosis, if she finds Calcium Pyrophosphate Deposition Disorder in the joints that's a pointer for hemochromatosis I suppose. Why do they always need to go around in big circles, when the answer is pointing them straight in the face.

Like I've said earlier, I believe I have a Porphyria gene (Porphyria has been described as genetic MS and many Porphs are diagnosed as having MS initially or like us, still are).
By this stage, I don't really care whats wrong, as I know what the fix is. I'm kind of working backwards with this one .

It's so important that I get this through though, so I can help my sister and brother, who have been suffering with this for a hell of a lot longer than I have.

I should have some new Iron test results in a few days. Will be interesting to see whats happened since January with that transferrin saturation.

Cheers..........

[Merlyn]

Katie-am trying to find a source of phlebotomy supplies that don't require professional licenses. Have to start checking out Taiwan, Hong Kong, China, India, Mexico... so far I have found places that you can order from, but they require such large amounts, like 10,000 needles, 500 blood bags. I have e-mailed a few companies in India, but so far nobody's answered.

[katie45]

This is not going to be easy!!Simka was one that sent some of merlyn's ifo to and this is his reply...

There is no evidence for role of iron in the pathogenesis of multiple sclerosis
regards
M.Simka

[katie45]

M, thank you for checking out sources for supplies etc. I can't beleive how closed minded the pros are! BUT THEN i GUESS THEY don't really have a reason to give a damn. They should have to live a day or two in our life...

[mangio]

I had my ferritin done, now I am going to try for the
the entire iron panel as per the suggestions of this thread - thanks.

I found one research paper (two or three years ago) from the UK.
The tests were for both iron and aluminum but urine tests not blood
work.

If I remember correctly the iron was on average 8x higher in
the mser's compared to controls. Al was also
considerably higher than controls and the patterns were different
for each type of ms.

Possibly there has been more work from this group since that
paper was published.

[katie45]

wow, 8x higher...I believe it! Any chance you could find those reports?

[mangio]

katie,
I originally learned of the research because MSRC had made reference
to the work. I went to the website and found some of the old data. The
copy of the numbers are very faint and my eyes quite fuzzy but I
did manage to get some of the numbers I think correct?

Here is a sample:

Fe normal/controls: .09 - .47 range
Fe rrms: .09 - 2.13

Al rrms: 0.65 - 39.48 - almost 40x
Al control: .23 - .66

Si normal/controls: 142 - 631
Si rrms: 68 - 288 * thanks and reference in your pm

[Merlyn]

There is no evidence for role of iron in the pathogenesis of multiple sclerosis
regards
M.Simka

Well, I sure am glad this is not my doctor! Somehow he has missed the hundreds of studies that prove that statement wrong.

[Merlyn]

I also want to offer a sincere apology for the way I worded my letter to Mark Sirius the other day. I emphasized the word "I" and this is so blatantly untrue. I could not verify anything without the wonderful participation of everyone here! I got carried away and I'm sorry if I offended anyone. I am really truly concerned that people once again will go through risky risky procedures that don't get to the root cause of their illness. I do come from a good place in my heart, and I am so angry about this whole indefensible lack of testing for iron metabolism that I have to rein in my words.

[Bethr]

You have done wonders already Merlyn! If this info helps just one person it's totally worth it. We've already surpassed that number!

I have been keeping a diary since January when I had my first dramatic blood test. My symptoms are definitely monthly, as you may remember I always got relief from fatigue symptoms when I menstruated. So I've also made a monthly cycle calendar up with a section for each symptom I suffer from so I can see any patterns and the effects from the blood takes in line with my menstrual cycle.

This has shown up an amazing pattern of symptoms. I'm on to my third cycle now so the patterns are clear.

I sleep heavily on my 16th day of my menstrual cycle, and my neurological symptoms have all happened on day 16 and 17. My rash appears exactly on the 21st day, I find that amazing. My joints are always sore during menstruation and majorly improved on day 8.
I suffer from fatigue on the 4th week of my cycle.

Days 8 - 16 are my good days. All hell lets loose on day 16.

Wonder what the Rheumatologist will make of it The main reason the Dr is sending me is because of the rash which is on my wrist joint which swells a bit under the rash and that part doesn't go away, sort of like carpal tunnel. The rash is monthly just like everything else.

It still points to Porphyria for me. The three main triggers in PCT are Iron, Estrogen and alcohol. I can't drink alcohol, I learnt young it makes me vomit and I just don't go there. Contraceptive pills I can't take either, I was on them for years, (my rash never went away at all back then) and they made me so moody. My Dr once put me on a double dose for a ovarian cyst and I got so sick I lost 5 stone. Candida took over, and my rash was everywhere, pus in my nails, pus in the rash, whole body breakdown.
Got off the pill after that.

Now Iron, I got sick when I started to load, first brain symptoms started at that point. My own Estrogen may be doing the rest of the influencing.

Still, it's the influence of the C282Y iron loading gene that's put me over the top this time. Iron is not my friend. I have hyperpigmentation which is incredibly dark at the moment because it's the height of summer and I've been out in the garden so much.

Now how do I convince the doctors of this one. OMG

[katie45]

No worries Merlyn....I sent back to m.Simka to look at some of the studies (included a couple links and statements of Zamboni himself regarding iron/brain) Most of these drs. belong on used car lots.

[Bethr]

Another thought. In light of this find, I think it would be a good idea for women to keep a track of their symptoms in line with their monthly cycle, day 1 being the first day of menstruation.

It's certainly opened my eyes

[katie45]

Bethr, sounds like a good idea...in my case I would have to go back 6 yrs....when menopause from hell started my ability to walk stopped, the heat intolerance/ hot flushes were murderous. I do know that in my 20's and 30's I thought I was 'lucky' as periods only lasted 2 days! Now I live just one long premenstrual syndrome apparently.

[katie45]

I have found a retired nurse who is willing to do phlebs for me and lives in my building if I get proof of the mutated gene for hh.! I'm praying!

[Bethr]

Good luck Katie. We have to keep pushing

When are your tests coming back?
Hopefully I will get mine today and will report in later.