Hello everyone

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Hello everyone

Post  marion on Wed Mar 20, 2013 10:45 pm

Hi everyone

Haven't been round for ages but thought I would see who is still here. Hope all of you have been given a little peace from the migraines and other health issues that seem to go hand in hand.

My migraines lessened with the start of thyroid medication, but still put in an appearance occassionaly, particularly when the lupus flares. The autoimmune problems have come into their own to replace the migraines with aches and pains from one end to the other.

Ah the joy of it all. It is nice to have some answers for why these things have happened but as soon as I sort one thing out it goes onto another. Lupus, the illness with a thousand faces, I believe is the expression.

I left a note with the young lass on the migraine page about some things to look for in the eternal quest for answers, hoping you all find some.

Regards Marion
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Re: Hello everyone

Post  Mini on Fri Mar 22, 2013 5:08 am

It is good to see you back Marion, and the fact that your M are a little better.

I am sorry to hear that M has been replaced by something even more complex, like Lupus.
Would you mind telling us more about your symptoms of Lupus and how, and by whom, you were diagnosed.
I belive that there is a strong connection between M and some autoimmune conditions, and I think many of us still remain unaware and untreated, because it is very difficult to get any diagnosis when it comes to more complex conditions.

As you said, Lupus is a condition with many faces and doctors are use to dealing only with some parts of our bodies and know nothing about the rest, let alone to see any connection btween complex symptoms.
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Re: Hello everyone

Post  marion on Fri Mar 22, 2013 6:10 pm

Lupus or any other autoimmune illness, is very hard to diagnoise.

This is probably the bigget mistake I have made in trying to get answers:

If like me you go to the doctor when capable of driving and have tests when you are feeling "up to it", chances are you have already passed the point when whatever was out of wack is now behaving itself again.

If you look at it like measels where you have an incubation period, then the spots come out and you have passed the contagious period - the period when your body is very much under attack, it makes sense that whatever has upset your body for whatever reason, has gone again if you wait to feel reasonable enough to go for tests. You may even have already passed the point of something showing up even when you start to have the symptoms.

Have your blood test requests sitting waiting for the moment you feel like hell and have a friend drive you.

Blood tests for autoimmune. ANA anti nuclear antibodies. The blood test that gives a non-specific indicator of a broad range of autoimmune illnessess - but not all. Mine only registers if I'm at deaths door.

If your only symptom is migraine then I would doubt if it is autoimmune.

If you are tired unexpectedly, if you feel depressed and have no reason to be, if you ache in other places, ribs, hips, back etc but xrays are clear, read up on undifferentiated connective tissue disease. If you have rashes ditto. And these symptoms can span many years and not take place at once. If you swing from one problem to the next and then back again - autoimmune.

Confirming that you are autoimmune will NOT provide solutions unless you are really lucky. It will give you some clue as to how to treat yourself, but it will also bring the realisation that this is a life long committment to being well.

Stress in autoimmune is a killer - literally. Get it out of your life. I haven't. I guess that I will need six months to a year of sitting on my butt to even think about calming this down. You hear of people running away, going bush. I have come to the conclusion it is the only answer. While stress exists in your life, your body will continue to think there is a physical danger and continue to produce antibodies to try and combat this danger.

Posts regularly come up on this and similar sites commenting on the rate of high achievers suffering from migraine or autoimmune problems. Science is only just coming to the realization that constantly raising adrenal levels with years of stress, we end up affecting our endocrine system.

Autoimmune diseases create contraversy in the medical profession. Positions are VERY divided on diagnosis and treatment. Even after registering very high results on 3 types of thyroid antibodies, Tpo, TRab and the other one which I can't think of the name, the doctor I was seeing still told me to "go home and deal with it" because my TSH, regarded by old school as the golden standard, was still in range.

If you want your thyroid tested, test for antibodies, not TSH (thyroid stimulating hormone). Many doctors will point blank refuse to test for ab's. Find another doctor.

Sinus also seems to be very involved with this autoimmune process. No matter what illness forum I look at, it seems to be an extremely common complaint. And this is so logical. This is our first point of defense. If you have a sinus problem this is also a strong sign that your body is over-reacting to the world and your immune system is distressed.

Hope someone picks up something out of this. I'm not clever like so many people who have learnt to advocate for themselves and become so much more knowledgable than many specialists in their illnesses. I am trying to understand though and I think this has helped me more than anything else.

Best to all.

Marion
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I'm back

Post  estre004 on Fri May 31, 2013 10:28 am

Hey, I just came back also if anybody remembers me.

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Re: Hello everyone

Post  WitsEnd on Fri May 31, 2013 3:01 pm

estre004 wrote:Hey, I just came back also if anybody remembers me.
I do Smile
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Re: Hello everyone

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