I was wondering if any of you have had your aldolase plasma checked.
I went to a new rheumy and she sent me for blood tests. I just got the results and my aldolase plasma is very high. From what I could find out on the internet, it is a glycolytic enzyme. Is this RSD related?
Any insight would be very much appreciated.

Linmarie

but the more I learn the less I know. I looked it up and the only way I can see it relating to RSD is the breaking down of muscle that some people get from RSD. But that is a wild guess and please just make sure you bring it up with your dr. It could be nothing or something that needs to be checked further. Sending good thoughts that it is nothing to stress you more. Carose

Hi Linmarie,

I developed RSD in June, 1995, and about a year later I got my first PC and began researching this disease on the Internet. It was the sort of research that would have been impossible until then; allowing me to read more than 3500 research abstracts (not all on RSD), and focus entirely on published research. It didn't take me long to learn that there is very little actual published research into this disease. More than 90% of the published literature on RSD is nothing more than opinion and speculation.

It took about six months of intensive (six hour per day) research before I was convinced that there is absolutely no evidence that this is a neurological disorder. It was thought to result from a peripheral nerve injury when it was discovered in 1863, but no one knew anything about nerves back then.

In 1916, French surgeon, Rene LeRiche, was invited to examine a wounded soldier (it was WWI) diagnosed with causalgia. He saw that everyplace the soldier reported pain was cyanotic, and based on an experience with a pt diagnosed with "...a rare sympathetic disorder", LeRiche hypothesized that the disease is the result of damage to sympathetic nerves, and not peripheral nerves as was first thought.

It made sense. The SNS exerts great (but not exclusive) control over circulation by contracting and dilating the smooth muscle that surrounds all of our arteries, so it was easy to imagine that damage to sympathetic nerves could cause abnormal vaso-constriction; compressing the arteries until only a tiny amount of blood could pass through them.

LeRiche introduced the surgical sympathectomy (severing sympathetic nerves into an extremity to stop them from constricting the arteries), and it worked. For the next 30 years, surgeons made lots of money cutting sympathetic nerves; The problam was (and is), that the surgeries only stopped the pain for about two years, then it returned; in the words of many patients "with a vengance". Doctors assumed the nerves had regrown and reconnected. They were wrong. There isn't space here to explain why, but they were wrong.

In the late 1940s, medical technology had advanced to the point where arterial blood flow could be measured and statistical averages could be obtained showing what was normal. To the surprise of RSD "experts", it was learned that arterial blood flow in RSD affected limbs was equal to, and sometimes greater than that in contralateral (opposite) limbs of patients, and of controls. Sympathetic vasoconstriction did not cause RSD.

All that I just said was prelude; showing how assumptions about the sort of nerve injury required to cause this disease seemed to make sense, but could not stand up to scientific analysis. In the 1940s, RSD "experts" lost their neurological explanation for cyanosis: SNS vasoconstriction did not cause the cyanosis in RSD. What was their response? They named the disease RSD (it was causalgia until then) and stopped talking about cyanosis.

I don't know why they did this. I'm guessing that after years of telling pts it was SNS vasoconstriction, they just didn't have the guts to admit they were wrong. So they stopped using the word cyanosis, and I mean STOPPED. You have a greater chance of hearing the Pope mutter "****" than hearing an RSD "expert" say the word "cyanosis".

I was brought up to drink my whiskey neat, vote the Democratic ticket and believe that doctors ALWAYS follow the Hippocratic Oath. Today, I don't drink, am a recovering Republican and know that when they continue to pretend cyanosis doesn't exist in RSD, some doctors are not following the Oath. They are lying by omission, and it is destroying the lives of RSD patients around the world; because cyanosis is the key to understanding RSD.

Cyanosis means that the cells are not getting enough oxygen (O2) [or nutrients (Nts)] to function properly. Our cells combine these two ingredients to generate the energy they need; it called aerobic (having molecular oxygen present) metabolism. Our cell mitochondria turn O2 and Nts into ATP, which is stored in the cell and used much like we eat an energy bar. Most of the cells in RSD affected tissue can't use this because they aren't getting nearly enough oxygen.

Our DNA is really incredible stuff: It contains instructions for everything the cells must do in order to survive and function, including an alternative to aerobic metabolism. Plan B is called glycolysis: (GeneratingATP without consuming oxygen and thus anaerobic).

Aldolase is a by-product of glycolysis, and thus, like cyanosis, just more evidence that RSD is the result of ischemia (blockage of arterial blood flow [to the cells]).

In my first paragraph I said that just about everything written about RSD is opinion or speculation. I should have said it is a splivit (ten pounds of horse-**** in a five pound bag). It could almost be funny if it weren't so tragic.

If the 100 or so "experts" who do most of the writing about RSD would just begin using the word "cyanosis" again, some researcher would start looking for causes. They wouldn't have to look far.

In 1963, 100 years after the discovery of causalgia/RSD/CRPS, researchers discovered a brand new disease: One in which a physical trauma begins a disease process in which tissue becomes inflammed and then cyanotic.

The disease, called ischemia-reperfusion injury (IRI), was discovered after the heart-lung machine allowed surgeons to block arterial blood flow to the heart (ischemia) in order to perform open-heart surgeries. The surgeries were successful, except that too many patients were dying. They looked for an answer and they found it.

The problem for us is that the physicians who know about IRI are cardiac and thoracic surgeons, and they believe it is caused by physician-induced ischemia (using tourniquets during surgery), which is followed by a complex series of ischemic events caused by the immune response to trauma.

(There isn't space in five posts to completely describe the IRI process, so (if God allows me the time and energy), I will have to write even more posts. Anyone who wishes can certainly look up IRI on the Internet and learn about it the way I did; and if you want to try, I'll help in every way I can).

Back to "the problem is": It makes sense that docs familiar with IRI think it only happens after physician-induced ischemia; that's the only way they have ever seen it happen. Few cardiac or thoracic surgeons have even heard of RSD, and even if they did, and looked it up, they would learn that the "experts" agree that it is a nerve injury. That would end their investigation.

If one of them read the word "cyanosis" in the context of RSD, that might cause their antennae to quiver: cyanosis is proof of hypoxia (a deficiency of oxygen reaching the tissues of the body), and they know ischemia produces hypoxia. But they aren't going to find that word in the RSD literature, and so we will continue to suffer from a disease that everyone (who counts: the doctors, not the patients), agree is a nerve injury. We're just along for a very bumpy ride until a few more RSD people begin demanding evidence...Vic

Hi Vicc,

Thank you so very, very much for your reply. I am going to look up IRI.

Please forgive me if I don't understand yet but do you think that all people with RSD have IRI? Also, is this why hbot seems to help some people with RSD? And, finally what can we do to get more oxygen into the cells?

I really appreciate you sharing all of your knowledge.

Linmarie

Hi Linmarie,

and sorry I waited so long to reply: I'm old and easily diverted.

Taking your questions out of order; hyperbaric oxygen (HBO) does help some patients with RSD, and would help almost all if it were delivered properly. By "properly", I mean something closer to what I proposed in a series of posts made on Buckwheat's thread Vascular Issues.

I'm afraid there isn't any way, besides HBO, to get more oxygen into our tissue. In it, oxygen is delivered at high-pressure throughout the body and not just through the circulatory system.

If you plan to learn about IRI, the first thing you need to learn about it the immune response to trauma. It does respond to trauma, and in exactly the same way as it does to a virus; starting with inflammation.

I'll be glad to email you copies of some abstracts that present IRI in a way that doesn't require learning a ton of new words; just a couple-hundred pounds, but I probably won't be able to do that for about a week...my energy-tank is running on "empty".

And finally, don't apologise for asking questions. I love questions and have been known to beg for them.

Looking forward to hearing from you...Vic

Dear Vic,

I know I've never talked to you before but I would like to say thank you so very much for all of your insights and obvious hard work. What you say about ischemia is the first thing that has made since to me since my own diagnosis. I am not a doctor, just an LPN but everything the pm, neuro's, pcp's and so on just didn't add up! I always knew there was an element of hypoxia, obviously, because of the cyanosis to my arm and coldness to my hand. Nobody even tried to explain that, I also assumed it was because they honestly didn't know what was causing it anymore than they know what causes rsd. I hope and pray you will continue posting and sharing your information, I have done lots of research myself but unfortunately I am a better nurse than computer wizard and don't know how to post the links that I find onto a different web site. By the way do you take trental by any chance? just curious Thanks again, Vic , I appreciate it more than you know, jennyk

It's interesting that one of the things that is most stressful for me is using my hands above my heart and that one of the best things for me in ghinko biloba. I was having memory problems so tried the ghinko and it didn't help the memory in the least but helped a lot with the pain. This leaf extract is supposed to improve circulation in the capillaries.

Jenny,
I think I am about the only one on this forum, that I know of, who does take Trental. I have done so since about 3/2005. Have I found it helpful. Yes I have found it to be in that all my meds seemed to work better since being on Trental.

DebbyV

Hi Debby,

Thank you for your response to my question about trental! Any and all advice, info is always greatly appreciated I'm wondering if you could be a little bit more specific in how it helps? Does it help with mottling and temperature of affected extremity? just curious, jenny

Thank you all for your responses. This subject is so bewildering to me.

Vicc,
I would very much like to have your info. I did briefly talk to the rheumy on the phone and she did say ischemia is a possibility with me. I have an appointment in October and would like to learn what I can by then.
Sorry to hear that your energy is so low. But I think I can kind of relate. I don't even get on the computer every day. So, whenever you are up to it my email is lindaandsteve2@earthlink.net.
Thanks again,
Linmarie