Phlebotomy anyone?
Bethr, how much blood did you have drawn before? ....it sure helped for a while didn't it! When I had just three vials taken, I noticed increased spasticity after a couple days, but also felt much better after that. M, sure hope you have excellent results after thurs., also keep in mind at first you might notice a little worsening? I am excited to hear your reports1
Maybe it's due to the fact that people keep collecting iron? Sure seems expensive for 18 months...http://www.timescolonist.com/health/Tes ... story.html
In a paper published in December, the Italian surgeon reported that 65 patients who had the balloon "angioplasty" saw improvements on a standard scale of MS symptoms, though the benefits disappeared for the most advanced cases by the end of 18 months.
I hope you find the new hematologist agreeable Bethr... and also that he authorizes more phlebotomies based on hemoglobin bouncing back. It does not surprise me that you are losing the benefits of your first phlebotomy, because of the iron gets out of storage sites you will be back to square one. At least that is my take on it. I think red blood cells take 45 days to totally replace. Anyway, I cannot wait until Thursday. I am getting such sore joints, so quickly, I cannot believe it. I cannot sleep from the spasms and pain... if this provides the relief I expect, and I don't expect astounding results, just noticeable improvement in stiffness, shoulder joint pain, hopefully heat intolerance... that will be enough to proceed with further treatment.
Hi Katie, I had about 5 vials taken on 6 January (not sure how big each test tube is say 50-100ml total) and fatigue disppeared for four days, then straight back to sleep and joint pain, and then 470ml on 14 January, + I've had two x menstruations during that time, I've just hit four weeks with good energy, my right hip is starting to ache again occassionally and like I said above, needing a cat nap in the afternoon, but still a great improvement.katie45 wrote:Bethr, how much blood did you have drawn before? ....it sure helped for a while didn't it! When I had just three vials taken, I noticed increased spasticity after a couple days, but also felt much better after that. M, sure hope you have excellent results after thurs., also keep in mind at first you might notice a little worsening? I am excited to hear your reports1
You should see my plant nursery, it's nearly back to being shipshape! I've done heaps of spring cleaning in the house. I'm not out of the woods yet, but things are looking up.
I'm trying to get into the hematologist early. I was told by my GP that there were no private hemotologists I could see in my city, that I would have to wait for the public system to take me on. I've read on the hematologists website, that he does take private patients usually in 1-2 weeks. I am so sick of my GP!
Good on you Katie. Keep pushing. It's so hard to educate your doctors as well as keep yourself going, and not start to think maybe you are going mad, and all this must be in your mind.
It's not! We are definitely on to something with this blood letting.
A product of our "iron filled" lifestyles probably. They have been inserting it in our basic foods for decades, fortifying everything in sight, and in some cases injecting it into us. It's no wonder we are starting to crack.
Too much iron is as bad as not having enough.
That was an argument I had with my original GP. I said to her, well if you had a patient who was anemic, you'd just give them a pill. But because i have too much iron, you just freak out at the mention of phlebotomy! It's trivial, giving blood, when you really think about it.
It's not! We are definitely on to something with this blood letting.
A product of our "iron filled" lifestyles probably. They have been inserting it in our basic foods for decades, fortifying everything in sight, and in some cases injecting it into us. It's no wonder we are starting to crack.
Too much iron is as bad as not having enough.
That was an argument I had with my original GP. I said to her, well if you had a patient who was anemic, you'd just give them a pill. But because i have too much iron, you just freak out at the mention of phlebotomy! It's trivial, giving blood, when you really think about it.
[quote="stiffness, shoulder joint pain, hopefully heat intolerance... that will be enough to proceed with further treatment.[/quote]
adding hip pain, terrible spasms and charlie horses (even in the stomache) when I exert ....wouldn't it be wonderful if all of this were gone! and without the drugs! Then we could work on regaining balance and getting back some muscle tone. Well, I can dream.....lol
m, at the risk of belaboring a point...I KNOW WE ARE NOT DREAMING THIS UP!
Our mistake was in believing 'they' wanted us to get well as much as we did.Sadley, this was never true of most of them. The interest was in using people as lab rats... for their 'studies' etc. It's sounding like science fiction, I know, but the truth is usually too bizarre to accept. Tha6t's how they get away with calling us crazy...
adding hip pain, terrible spasms and charlie horses (even in the stomache) when I exert ....wouldn't it be wonderful if all of this were gone! and without the drugs! Then we could work on regaining balance and getting back some muscle tone. Well, I can dream.....lol
m, at the risk of belaboring a point...I KNOW WE ARE NOT DREAMING THIS UP!
Our mistake was in believing 'they' wanted us to get well as much as we did.Sadley, this was never true of most of them. The interest was in using people as lab rats... for their 'studies' etc. It's sounding like science fiction, I know, but the truth is usually too bizarre to accept. Tha6t's how they get away with calling us crazy...
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ForeverSpring
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The Hemochromatosis HFE Gene Analysis report came back today. The blood was sent to the Mayo Clinic for analysis.
One copy of the H63D mutation was identified, so it is H63D Heterozygous.
The report states that the risk for either a diagnosis or a predisposition for Hereditary Hemochromatosis (HH) is low. Then the next sentence says that it cannot be excluded. Sounds like a comment made about MS!
Clinical presentation and the results of other lab tests must be taken into consideration.
ForeverSpring
One copy of the H63D mutation was identified, so it is H63D Heterozygous.
The report states that the risk for either a diagnosis or a predisposition for Hereditary Hemochromatosis (HH) is low. Then the next sentence says that it cannot be excluded. Sounds like a comment made about MS!
Clinical presentation and the results of other lab tests must be taken into consideration.ForeverSpring
Maybe we should start a new list/thread of all the heterozygotes for Hemochromatosis who feel better after blood takes/menstrual periods/phlebotomy's. It seems to be trend. Maybe it's because we don't yet know what the other mutation is. Remember HH gene results looks something like this.
Homogynous C282Y/C282Y or C282Y/H63D or H63D/H63D
Heterozygous C282Y/? or H63D/?
What does ? = Some other unidentified gene? Or one they don't routinely check for. Over 38 genes for HH have been identified, but are not tested for.
Hmmmm...........
Homogynous C282Y/C282Y or C282Y/H63D or H63D/H63D
Heterozygous C282Y/? or H63D/?
What does ? = Some other unidentified gene? Or one they don't routinely check for. Over 38 genes for HH have been identified, but are not tested for.
Hmmmm...........
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ForeverSpring
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Beth, I have the feeling that this doctor is unfamiliar with iron overload and HH, so I am not sure that he will order phlebotomy, but phlebotomy can be done at the clinic.Bethr wrote:Yes, well my test results said C282Y heterozygous carriers were unlikely to load iron as well.
Yeah right!
The test will be - Will your doctor help you to unload the extra iron you are obviously carrying.
The nurse (or nurse aide?) who phoned me about the results of my iron tests and then the gene test, has told me twice that I do not have iron overload!
I have high iron and a transferrin saturation rate of 60%! Whether she was speaking on her own, or whether she was repeating what the doctor told her, I do not know. Somebody is misinformed!I am reading further to have a better understanding before I make an appointment with the doctor to discuss these results and request phlebotomy. The sooner the better. I certainly do not want to wait until my ferritin levels are sky high on top of these other high tests. That would indicate some serious damage.
ForeverSpring
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ForeverSpring
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This field of research is so relatively new, and new gene mutations are continually being discovered. There is much that is unknown.
My report states:
"Additionally, these results do not rule out the possibility of disease causing mutations in other regions of the HFE gene or in other as yet undefined genes. These results, therefore, need to be interpreted in the context of the clinical presentation and the results of other laboratory tests."
ForeverSpring
My report states:
"Additionally, these results do not rule out the possibility of disease causing mutations in other regions of the HFE gene or in other as yet undefined genes. These results, therefore, need to be interpreted in the context of the clinical presentation and the results of other laboratory tests."
ForeverSpring
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ForeverSpring
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Do you happen to have the reference for that information?Bethr wrote:If they are unwilling to do anything, try and get a referral to a hemotologist like I did. Transferrin Saturation over >45 is a 90% positive marker for hemochromatosis. Maybe you need to print something out to show your doctor.
ForeverSpring