Hughes and MS, diagnosing them?

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Hughes and MS, diagnosing them?

Postby Wonderfulworld » Wed Dec 20, 2006 4:44 pm

Hi
I am sure most of you have seen the recent stories on Hughes syndrome (Antiphospholipid syndrome or "sticky blood") and up to possibly 5% of people with MS being misdiagnosed.......and actually having Hughes instead?
http://www.msrc.co.uk/index.cfm?fuseact ... pageid=736

I'm just wondering, is it possible to have both MS and Hughes, or are they either/or?
It's just that I have now sadly had 3 miscarriages, latest one being a week ago, and obstetrician is strongly hinting he thinks it's a strong possibility I have Hughes. This would throw my whole dx of MS into doubt.........very scary, very unknown.................don't know what to think.
It will be 10 weeks before I get results from the tests, and I am very upset. If it's positive for Hughes, does this mean I don't have MS? I am sorry, just very confused at the moment.
I did have a test for Hughes about 6 months ago and it was negative......is it possible to be positive on one occasion and negative on another?
Sorry, there are probably too many questions in this post, just my head is "all over the place" at the moment............
Thanks for any feedback you can give me.
:oops: :?
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Multiple "autoimmune" diseases

Postby lyndacarol » Wed Dec 20, 2006 6:21 pm

I am so sorry to hear of your miscarriage, Wonderful!

From reading and an immunologist friend, I have learned that it is quite common for a person with one autoimmune disease to develop a second or even a third. This has been my case: first, endometriosis; then, MS.

My mother-in-law had a similar experience--first, rheumatoid arthritis; then, thyroid disease; then Sjogren's disease.

Dr. Noel Rose, head of the Johns Hopkins Center for Autoimmune Research, has written that he feels there is a common thread to all autoimmune diseases. I think this revolves around excess insulin; please consider requesting a fasting serum insulin test from your physician. Some women with polycystic ovarian disease (another autoimmune problem) have seen difficulties with conception improve when they took metformin (Glucophage), which is often prescribed for type 2 diabetes.
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Postby Lyon » Wed Dec 20, 2006 7:16 pm

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Postby Wonderfulworld » Thu Dec 21, 2006 3:57 am

Thanks Lynda and Lyon for your replies.
Lynda that makes sense about autoimmune, I also have asthma and coeliac disease. I just think everything wrong with me has to do with inflammation and my body attacking my tissues instead of foreign substances. The obstetrician took so many vials of blood from me last week he could well have included an insulin test, as I had been fasting for 18 hours at that stage. I will ask him in Feb when I go back for the results and get an insulin test done then if he hasn't.

Lyon, Hughes is definitely autoimmune - see http://www.hughes-syndrome.org/
Yes, if I had Hughes things would be better, but I really really don't think that it is - I have had fairly classic MS symptoms since I was 12 years old, dx 8 years ago at 26. It would change everything. I suppose it's possible there was a problem with the test my doc did but I doubt it.
To be honest I don't know what to think, and I just need to hear the results of the tests, wish it wasn't 10 weeks wait................
Thanks again for your replies.
World not feeling particularly wonderful at the moment!
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Postby Chris55 » Thu Dec 21, 2006 6:58 am

With all due respect to the inculin, I think we are dealing with a bacteria. See the news today on gut bacteria causing obesity.
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Postby Lyon » Thu Dec 21, 2006 10:00 am

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Concerning insulin testing

Postby lyndacarol » Thu Dec 21, 2006 8:36 pm

Wonderfulworld, you seem to have a good understanding of your situation. First, I think it's important to know your own body well, as you seem to. With Hughes and/or MS and "autoimmune" asthma and celiac sprue, you qualify with me for the "Multiple Autoimmune Disease Club."

I agree with you that inflammation is GREATLY involved with our conditions! That is the reason I am trying to reduce my level of inflammation by diet and anti-inflammatory supplements; but I have no success so far.

Your obstetrician MAY have included a fasting serum insulin test for you, but I doubt it. The testing was only developed in the 1950s and is not generally routinely done.

If you request one, the desired results should be below 10 UU/ML. In five friends with MS (including myself) who have had this test, all 5 had higher numbers! Another friend plans to request one when she sees her physician the end of January--I'll just bet it will be above 10! I'll let you know when I find out.
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Postby Wonderfulworld » Fri Dec 22, 2006 3:30 am

Thanks Lynda - what does one do if the results are above 10uu/ml?
Does insulin help?
I'm not sure what happens then if you're trying to conceive, if you can/should continue to take it?
I know I have been tested for diabetes about 5 times but never had any elevated readings..............
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High number indicates excess insulin

Postby lyndacarol » Fri Dec 22, 2006 9:38 am

WW, a result above 10 indicates that the pancreas is secreting more insulin than is necessary to handle the glucose that is in the bloodstream--leaving excess insulin circulating there. So one would NOT want to take in more insulin.

I am not surprised that your tests for diabetes came out fine, since the level of glucose (not insulin) was tested then. High glucose is the definition of diabetes. The body always overcompensates in the production of insulin for the amount of glucose it finds circulating.

The problem becomes "How do we adjust the insulin level down to more closely match the amount of glucose?" To my knowledge, there is no drug designed to lower levels of insulin. (But I believe metformin--commercially called Glucophage here-- and pioglitazone--commercially called Actos here--will lower circulating insulin levels.)

Otherwise, the only recommendation I have received for lowering insulin levels is through diet. This is to remove any food that will convert to glucose--no (or VERY few) carbohydrates, no sugar, of course. I am trying this; my glucose is always at a good level, but my pancreas continues to secrete too much insulin.

(By the way, my suspicion is that my inflammation or mucus also stimulates my pancreas to overproduce. So I continue to try to reduce that too, but unsucessfully so far)

If your test result is above 10, you might try diet, with a better outcome than mine. You might discuss one of these drugs with your physician. (I don't know if they are recommended for pregnant women.) I know metformin has been used by women with polycystic ovarian syndrome and allowed them to conceive.

My GUESS is that excess insulin interferes with conception and lowering it might help achieve pregnancy.

I continue to seek to lower my own level. I will let you know what I find. I wish you the best in your own attempts. Oh, remember that I am NOT a scientist or physician, but perhaps these ideas will initiate discussions with yours.
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Postby Wonderfulworld » Sun Dec 24, 2006 5:07 am

Thanks for that information Lynda.
I will indeed ask for this in Feb when I'm back in the obs clinic.........
In the meantime it's a waiting game for the other results. :?
Thank you again for the detailed info.
WW
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Infertility and hyperinsulinemia

Postby lyndacarol » Thu Jan 11, 2007 5:53 pm

I am tempted to put this post under the "Insulin" thread as well. But since it may be of special interest to Wonderfulworld, I put this here:

Two days ago our local midday news carried a health segment on infertility. Among several ideas, the report said women, who had difficulty conceiving, often could become pregnant after losing some weight. (These were NOT obese women!)

Then the report stated that women with Polycystic Ovarian Syndrome (PCOS) seemed to have too much insulin, which kept them from becoming pregnant.

Another good reason for some to test for the insulin level!
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Caution on the drugs Glucophage and pioglitazone

Postby lyndacarol » Thu Jan 11, 2007 8:29 pm

Because I mentioned these two drugs in a December posting here I will add this information from the treatise, Insulin: Our Silent Killer by Thomas Smith (which I know I have mentioned before).

In recounting his own experience with Type 2 Diabetes, he states on page 16, "For those who prefer to understand what the doctor is really doing we include this section. The information contained in this section is the reason the writer refused orthodox treatment."

On page 17, he writes about Glucophage (metformin):
Biguanides
Currently this oral glycemic category has one drug listed; it is: Glucophage. This is a popular drug manufactured by Bristol Meyers Squibb Company. Its active agent is "Metaformin". It is packaged in small white tablets containing 500mg and 850 mg dosages. It acts, in ways that were not clear in the PDR (Physicians Desk Reference), to lower blood glucose levels by three mechanisms. They are: it decreases hepatic glucose secretion, it decreases intestinal absorption of glucose and it increases peripheral uptake of glucose. Its main positive claims seem to be that it does not stimulate insulin production from the pancreas, it does not seem to be metabolized by the liver and it does not cause hypoglycemia. However, the PDR states that there were no studies made on people with hepatic (liver) dysfunction. Excretion is by the kidneys; it is contra-indicated for people with kidney disease. This drug is prescribed for Type II diabetes.

Side effects include: a small percentage risk of possible lactic acidosis, caused by metaformin accumulation in the system; this is fatal to 50% of those who experience it, however. The UGDP study (a study of oral hypoglycemic agents by the "University Group Diabetes Program"), which was referenced in the PDR, found increased cardiovascular mortality with this product. It often removes vitamin B12 from the system. Other side effects include Ketoacidosis, Hyperventilation, Myalgia, Malaise, unusual Somnolence, Diarrhea, Nausea, Vomiting, Bloating, Flatulence and Anorexia.


He later cautions against the family of drugs like pioglitazone because the first one approved (Rezulin) was eventually withdrawn after several deaths.

This information only points out the importance of discussing these choices with your physician.
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Postby Wonderfulworld » Fri Jan 12, 2007 12:51 pm

Thanks for those Lynda - the infertility and weight one is particularly interesting, I have seen that before I think.

Sadly though it is not my particular issue as I have a BMI of 21.5 and no PCOS. But a friend of mine does have PCOS and is rake-thin so I know it doesn't always cause weight gain. But I am definitely PCOS-free. (at least I know I DON'T have something for a change!!!)

I think the fasting serumm insulin test you mentioned does sound good and I will ask for it in Feb when I see him again.
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Postby Jill » Sun Jan 14, 2007 2:00 pm

hi wonderful life,
i was tested for hughes last fall. i think most doctors test for it thinking that the patient may have it INSTEAD of MS, not in conjunction with MS. (although it is probably possible to have both, i suspect it is unlikely) if you DO have hughes, it would be better news that MS as there are good treatments for it that can have you feelinng "normal"! i was hoping i had it instead of this MS mess. my testing didn't take 10 weeks though! geez, where are they sending your blood anyway....antarctica?! i had my negative results within week. best of luck to you whatever the outcome.
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