This Is MS Multiple Sclerosis Knowledge & Support Community

I totally understand ladies! I'm feeling much the same. The good thing is I can look out for my own family now. The good thing is that the way to keep clear of these diseases is to stay clear of the trigger (or should I say bullet!!!) I have the gene, so I am forewarned. I still have my health (somewhat ), and I intend to keep it and help my kids avoid it too. That's pretty empowering.

Ultimately my doctor has been hopeless in all this. If I hadn't worked it out for myself I'd still be in that dark void!

So, with this information readily available ,we sit in wheelchairs, with brains full of iron/inflamation, and symptoms of stroke etc while the drs refuse to do genetic hfe testing because???

Bethr, did u have to pay for your testing too? genetic test ?

No, we only have to to pay for the doctor visit (about US$20).
The Govt. subsidises the Dr visits and pays for everything else, including specialists. But if you want to get to a specialist fast you sometimes need private insurance. That costs about US$700 a year to cover a family of four. Welfare state here.......

Did u have any trouble convincing dr. to run the gen. test? What did you say?
I'm wondering if my having been labelled ms previously had some influence

No, because my iron levels were near consistent with DX for hemochromatosis, just 25 points short on the ferritin and I still menstruate etc, also had the right symptoms. But I had to draw attention to this, as my doctor knew nothing about hemochromatosis. She thought it had something to do with drinking and old men with stuffed livers
She's close to retirement age.

So yes I had to push a bit, but got it first try. Also my cousin was diagnosed in the previous year, so I'm sure that helped.
I have changed doctors since then, to a much younger one with more up to date training.

Is your doctor older? Do you know which genes your brother has?

I'm sure my old doctor just put my fatigue down to MS. Geez, I don't even have a DX being a "single event" girl. I got my sisters label.

Bethr, don't know which genes brother has, they didn't test him, just told him after a heart attack to 'give blood' every 2 weeks and they keep testing his blood....all my siblings have very clear hh symptoms and some family members are deceased with them.
My dr of 25 yrs is in his 50's, other one a bit younger. You see I think if they don't 'confirm and register pts, they can avoid curing whole families, leaving them to be dxed with all these money making labels...HH drs are very scarce in canada as far as I know. Tells me they are not very popular among drs of 'neuro-type diseases.

Oh, OK. I've read in studies that reducing iron helped heart disease.
Isn't it wicked how people seem to have to reach some critical point before they are treated. Just like you say, where is the preventative medicine. The knowledge is already there, but Drs; seem scared to apply it, or to be seen to be out of the box.

Doctors are killing people. They have killed about four with these stents. I accuse them of being negligent. There is no other word for it. Why are they telling people to spend thousands of dollars investigating this bizarre theory of CCSVI, without doing a simple blood test for iron metabolism. I think they should be locked up, accused of crimes against the disabled. Radical? Really who is radical? A blood test will not kill anyone, and it will show them if the root of the problem is iron metabolism.

Dr. told me the lab refused to test for the gene unless a family member was confirmed and in the registry. Who's ruling the labs?? Government. Even if you can find dr who can think outside the box...they too, are blocked. why do 'ranges' differ in gov labs of the same province? Merlyn had to pay a private lab for a truthful result of a dna test...wonder what the result would've been if it had been a gov. lab?

A simple blood test versus the complications being reported with CCSVI treatment? Who is the crazy one, me or the doctors?

Complications reported by Dr. Zamboni regarding "The Liberation Procedure"
-headache, nausea
-restenosis and need for reballooning

Complications self-reported by venous stent patients-
-headache, nausea
-accessory nerve damage caused by pinching in the lumen
-vagus nerve aggravation caused by pinching in the lumen
-risk of bleeding and other complications including stroke, due to use of coumadin, heparin and blood thinners as part of aftercare
-risk of venous stent migration into larger veins and the heart
-restenosis of stent site and need for ballooning of stent
-unknown patency for stents in jugular veins
-allergic reactions to pain medications administered during procedure

Risk for both angioplasty and stent procedure:
tearing of veins by catheter
infection
thrombosis/clotting

Katie45-I am more of a stupidity theory person than a conspiracy theory person LOL I honestly think nobody has put together the link between hemochromatosis and MS, or more comprehensively, the link between iron metabolism and MS. And I think the reason is MONEY. If MS, Parkinson's, Alzheimer's, Huntington's can be prevented by keeping iron levels low, then think of the loss of drug money and the research dollars. I am a heretic, I do not believe in doctors as Gods, I don't believe half of them could think the way out of a wet paper bag. I have met some good doctors, some very nice people, but really they are brainwashed by medical curricula that is determined by the drug companies. What I find is that people want to believe that doctors know what they are doing, because otherwise where the answers? This time, there is an answer, and I am grateful. No one can stop me from treating myself properly. It's pretty simple, on the Canadian hemochromatosis forum, some people do the procedure at home. They warn that it is safer to do 200-250 mL blood removal at a time. It is when you take out 500 mL that you run a small risk of passing out or blood sugar dropping or blood pressure dropping. That is why they do it in a hospital usually, because they remove so much at once. I had no bad reaction to the 500 mL, but if I am going to do it at home more often, I will lessen the amount removed at one time. I think I have discovered the greatest therapy on earth for MS because of the safety and the efficacy and the fact that no one can stop me. I gave me my power back, control over my life again.

M, how much did the dna test cost (in total) I'm going to have to test privately.And I need a source for phleb supplies...I don't know if vicky will do this without doc's ok.

I don't get it, when I have blood taken (2 vials) I cannot drive home. The drs office is across the street from me! I feel terrible (prisoner in Azkaban) and it takes me a couple of days to get over it. If I am menstruating, I just refuse my blood test because I would not be able to get out of the office. (even in a wheelchair)

Interesting.,

kc

katie45 wrote:M, how much did the dna test cost (in total) I'm going to have to test privately.And I need a source for phleb supplies...I don't know if vicky will do this without doc's ok.

Do you have a Health and Disability Commission (maybe under some other name?, ours is a Govt. Dept.). This was where I was heading if I didn't get some action. I still may do that if needed, especially if my sister can't get any blood taken because she has a MS DX, when she is over the normal iron ranges.

M, you said: . And I think the reason is MONEY. If MS, Parkinson's, Alzheimer's, Huntington's can be prevented by keeping iron levels low, then think of the loss of drug money and the research dollars. I am a heretic, I do not believe in doctors as Gods, I don't believe


I luv u sweetie, but u just defined conspiracy...lol