[waterwillow]

Hello again, since my last post a couple of days ago I went to hospital to have repeat blood test AChR.

I received the consultants letter in relation to last test. I quote

"I write to inform you that your anti-acetyl choline receptor anti-bodies are very slightly positive. I do not think this to be of any significance. However, I think it would be worthwhile repeating this blood test."

CONFUSION: When would a positive result NOT be of importance?

CONCERNED: After receiving replies to my last post I have read up a little on the web. Never sure if it is a good thing or bad. I noted the relationship with the thymus gland. My Mother died at age 66 of Hyperparathyroidism. A slow and hard thing to watch. However after removing Thyroid and Parathyroid glands a year later they opened her chest/breast bone to remove another "Gland". The only one I can think of in this area is the Thymus gland. This was in 1986 before fancy scanners etc.
I wonder if there is a familial connection in the family concerning the Thymus. Is there any genetic links proven?

Also I lost my eldest sister to lung cancer at age 56. (My age now). I read that a positive result AChR can be an early indicator of small cell lung cancer. Unfortunately as she had a bad back Xrays were of herspine and not lungs when she complained and when spotted she only survived 7 days.
How strong is this connection between AChR and Lung cancer.

AHHHHHHHHHH I read too much into things at times but the family history makes me react every time I get ill.

[southblues]

I think that the small cell carcinoma causes a different antibody.

http://www.mda.org/disease/lambert-e...drome/overview


I found it. They are anti-VGCC antibodies.

http://www.mda.org/disease/lambert-e...rome/diagnosis

[waterwillow]

Originally Posted by southblues

I think that the small cell carcinoma causes a different antibody.

http://www.mda.org/disease/lambert-e...drome/overview


I found it. They are anti-VGCC antibodies.

http://www.mda.org/disease/lambert-e...rome/diagnosis

Thanks for the links. Really fatigued today and in bed so will def check them in morning when not so fuzzy. Thanks again.

[AnnieB3]

It's okay, most people are confused while being diagnosed! It's not fun at all, is it?

You're from Ireland, right? That means you are of "northern European" descent. We are more prone to autoimmune diseases, which explains your family history.

There IS a strong correlation between small cell lung cancer and Lambert-Eaton Myasthenic Syndrome!! The GOOD news is that it is often easily treated if caught early. I'm very sorry that you lost your sister to it.

Yes, some of these diseases can run in families.

Your doctor is incorrect about the results not being significant. Every sign of disease should be respected and followed to find the reason why someone is sick. And, in LEMS, that antibody is often at lower levels. That does not mean the disease state is "mild."

I think phrases such as "mild heart attack" are oxymorons.

When was the last time you had a chest x-ray or chest CT? In MG and LEMS, they usually do a chest CT to look for thymic cancer (MG) or small cell lung cancer (LEMS). There is no correlation between MG and lung cancer.

Again, try not to worry! Many people who have LEMS and have the cancer removed, do a lot better afterwards.

You need to tell your doctor this information about your family's history and about LEMS (as Celeste has given you). You need that blood test right away, and a chest CT if it's positive.

Try not to be too stressed out. Just get the help that you deserve! Geez, are doctors bored by their jobs? Is that why they don't care whether or not they help a patient?!!!


Annie

Also get your vitamin B12 and vitamin D levels checked. Those deficiencies are quite common! A B12 deficiency can also make you very tired. In addition, celiac disease is so common in Ireland that they've done specific studies just on people from Ireland!

[davew41]

Originally Posted by waterwillow

Hello again, since my last post a couple of days ago I went to hospital to have repeat blood test AChR.

I received the consultants letter in relation to last test. I quote

"I write to inform you that your anti-acetyl choline receptor anti-bodies are very slightly positive. I do not think this to be of any significance. However, I think it would be worthwhile repeating this blood test."

CONFUSION: When would a positive result NOT be of importance?

CONCERNED: After receiving replies to my last post I have read up a little on the web. Never sure if it is a good thing or bad. I noted the relationship with the thymus gland. My Mother died at age 66 of Hyperparathyroidism. A slow and hard thing to watch. However after removing Thyroid and Parathyroid glands a year later they opened her chest/breast bone to remove another "Gland". The only one I can think of in this area is the Thymus gland. This was in 1986 before fancy scanners etc.
I wonder if there is a familial connection in the family concerning the Thymus. Is there any genetic links proven?

Also I lost my eldest sister to lung cancer at age 56. (My age now). I read that a positive result AChR can be an early indicator of small cell lung cancer. Unfortunately as she had a bad back Xrays were of herspine and not lungs when she complained and when spotted she only survived 7 days.
How strong is this connection between AChR and Lung cancer.

AHHHHHHHHHH I read too much into things at times but the family history makes me react every time I get ill.

get a cbc-dif blood test
this will give the cancer doctors a look into the platelet count and hg

a upper CT scan, with contrast
this will give them a good look into the lungs, and lymph area

get the vitamin d25 hydroxy blood work done
if your vitamin d3 is low get on it asap I take 6000 iu not 600 iu a day and
keep my levels as close to 80 as i can

I HAVE lambert eaton for over 2 years now with every 6 months testing for lug cancer and monthly blood work so far so good but you must keep on top if it..
also remember NOT all lambert is just lung cancer it can be any cancer also it can be NO Cancer and be autoimmune
i also have a thyroid issue..

[waterwillow]

Thanks so much for all your help and advice. Got another call from hosp to come on Monday morning to see my optometrist. I have prism in my right glasses lens.

I have no weight loss or anything just extreme fatigue and dreadful constipation (sorrrry).

Feel like I am in a washing machine tumbling and out of control.

Thanks to everyone