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auto immune?

Posted by paula on 1/22/02 at 23:27 (070929)

the auto immune issue dr reynolds brings up is interesting. anyone here thougght about that? wondering how many here have other or mild auto immune problems.? i do. thyroid, very mild arthritis. one therapist thought i had myo fascial syndrome. is this an interesting line of persuit to others? i'd lilke to hear how many of us have or suspect we have auto immunities.

Re: auto immune?

nancy s. on 1/23/02 at 06:39 (070949)

paula, i now have a strong suspicion that something auto-immune is going on with me (in fact, i believe i mentioned it after dr. reynolds brought it up). i suspect this because:

1. ten years ago i developed supposed carpal tunnel -- in both hands /wrists -- even though only my left hand was being overused (editing books). the exact same symptoms plagued me on both sides.

2. almost three years ago i developed pf in my left foot, but the three tendonitises i developed from that were bilateral. (could have been because of altered gait, though.)

3. i now have bilateral adhesive capsulitis ('frozen shoulder'), something that, according to my doctor and websites on the subject, is quite rare. (one frozen shoulder isn't all that rare; two are rare.) again, i have the exact same symptoms on both sides.

all my bloodwork showed nothing wrong as far as the regular serious systemic illnesses go (rheumatoid, lupus, etc.).

i'm left to wonder whether i fall into the category of what i think of as a sort of bermuda triangle collection of syndromes. fibromyalgia? chronic fatigue? i don't know. but the symptoms and pain are as real as any can get.

nancy

Re: auto immune?

CatherineL on 1/23/02 at 09:18 (070959)

Hi,
good topic...

I'm ready for my appt next Tues with a reumetologist, as both my mother and sister have been diagnosed with fibro, and I have many of the symptoms.

Also, thinking back, I have had long recovery periods for most injuries I've had...
-10 yrs ago, a auto accident, were I was hit from behind, -it took about 5 yrs to 'mostly' recover
-8 yrs ago broken bones in my foot took almost 1 year before I felt I was pretty much back to normal,
- 4 years ago, an auto accident, were I was hit from behind, but due to my previous auto accident experience, I by-passed the standard treatments and went for accupunture treatments and recovered within 6 months.
- 1 1/2 yrs of PF regardless of all the treatments I've done.

Catherine

Re: auto immune?

paula on 1/23/02 at 09:53 (070962)

weird i have frozen shoulder wrist tendon problems and p f and tendonitis too.

Re: auto immune?

john h on 1/23/02 at 11:13 (070980)

Paula: As Nancy S also has the same problems I wonder if a change in life style caused by PF might be related to some of these other problems. Not from an auto immune view point but more of a change in the mechanics of the way your body functions as a result of less mobility, walking different, probably using the upper body different, etc. That all song about the head bone connected to the head bone, etc, etc may come in to play here.

Re: auto immune?

paula on 1/23/02 at 13:03 (070998)

yes john, is it mechanical ?is it biochemical/ is it both for some of us?. interesting avenues to explore.

Re: auto immune?

Carole C on 1/23/02 at 18:45 (071035)

Maybe I'm overly skeptical, but having MS has made me question whether or not so many of these conditions are even caused by auto-immunity in the first place. If MS is an auto-immune disease, why is it that we sufferers from MS are not plagued like Job with a multitude of the many dozens or hundreds of other conditions and diseases that are blamed on auto-immune problems? Personally, I don't buy it.

I tend to wonder if perhaps MS and other so-called auto-immune conditions have become a 'wastebasket diagnosis' that is applied once a doctor has eliminated the treatable conditions. Well, it's at least a possibility, IMO.

Carole C

Re: auto immune?

paula on 1/23/02 at 19:14 (071042)

i think i read something about oxandrin being tried for ms very recently. i could be wrong but you may want to go to google and check it out. i was on it for a little while for something else.

Re: auto immune?

Carole C on 1/23/02 at 19:42 (071049)

Thanks, Paula. That is so kind of you to let me know! I will be sure to check it out. I guess I'm sort of a health nut when it comes to MS, because right now I don't take any drugs for it. I'm of the opinion that with MS no matter what you take, or don't take, you have a pretty good chance of getting better (at least temporarily) because that is the nature of the disease. A lot of studies testing new medications for MS use less than 100 people (sometimes less than 30!) with no experimental controls and if half get better they proclaim great success. Of course, they might have got better results with no medicine sometimes. All the studies aren't this bad but as a scientist I get pretty horrified that some experiments would even be written up.

I haven't ever taken any medication for it yet, and luckily (knock on wood, keeping fingers crossed) I seem to be in a long term remission. Back when I was having problems, I was hanging on day by day letting the other patients be the guinea pigs. It didn't seem to do me any harm. MS is a terrifying disease to have when the tiger is loose. If I start being symptomatic again, I might try some medication to try to cage that tiger. However I'd still be quite cautious and hold off if I could.

Carole C

Re: auto immune?

paula on 1/23/02 at 19:49 (071051)

carol, i am so glad you are in a long term remission. it couldn't happen to a nicer person. sounds like your conservative approach is working for you and i hope it works forever for you. yeah, one wonders about most of the studies out there. seems they are for the drug companies to test three people for two minutes and declare it a winner. i'm not a big fan of drugs either.

Re: auto immune?

nancy s. on 1/23/02 at 06:39 (070949)

paula, i now have a strong suspicion that something auto-immune is going on with me (in fact, i believe i mentioned it after dr. reynolds brought it up). i suspect this because:

1. ten years ago i developed supposed carpal tunnel -- in both hands /wrists -- even though only my left hand was being overused (editing books). the exact same symptoms plagued me on both sides.

2. almost three years ago i developed pf in my left foot, but the three tendonitises i developed from that were bilateral. (could have been because of altered gait, though.)

3. i now have bilateral adhesive capsulitis ('frozen shoulder'), something that, according to my doctor and websites on the subject, is quite rare. (one frozen shoulder isn't all that rare; two are rare.) again, i have the exact same symptoms on both sides.

all my bloodwork showed nothing wrong as far as the regular serious systemic illnesses go (rheumatoid, lupus, etc.).

i'm left to wonder whether i fall into the category of what i think of as a sort of bermuda triangle collection of syndromes. fibromyalgia? chronic fatigue? i don't know. but the symptoms and pain are as real as any can get.

nancy

Re: auto immune?

CatherineL on 1/23/02 at 09:18 (070959)

Hi,
good topic...

I'm ready for my appt next Tues with a reumetologist, as both my mother and sister have been diagnosed with fibro, and I have many of the symptoms.

Also, thinking back, I have had long recovery periods for most injuries I've had...
-10 yrs ago, a auto accident, were I was hit from behind, -it took about 5 yrs to 'mostly' recover
-8 yrs ago broken bones in my foot took almost 1 year before I felt I was pretty much back to normal,
- 4 years ago, an auto accident, were I was hit from behind, but due to my previous auto accident experience, I by-passed the standard treatments and went for accupunture treatments and recovered within 6 months.
- 1 1/2 yrs of PF regardless of all the treatments I've done.

Catherine

Re: auto immune?

paula on 1/23/02 at 09:53 (070962)

weird i have frozen shoulder wrist tendon problems and p f and tendonitis too.

Re: auto immune?

john h on 1/23/02 at 11:13 (070980)

Paula: As Nancy S also has the same problems I wonder if a change in life style caused by PF might be related to some of these other problems. Not from an auto immune view point but more of a change in the mechanics of the way your body functions as a result of less mobility, walking different, probably using the upper body different, etc. That all song about the head bone connected to the head bone, etc, etc may come in to play here.

Re: auto immune?

paula on 1/23/02 at 13:03 (070998)

yes john, is it mechanical ?is it biochemical/ is it both for some of us?. interesting avenues to explore.

Re: auto immune?

Carole C on 1/23/02 at 18:45 (071035)

Maybe I'm overly skeptical, but having MS has made me question whether or not so many of these conditions are even caused by auto-immunity in the first place. If MS is an auto-immune disease, why is it that we sufferers from MS are not plagued like Job with a multitude of the many dozens or hundreds of other conditions and diseases that are blamed on auto-immune problems? Personally, I don't buy it.

I tend to wonder if perhaps MS and other so-called auto-immune conditions have become a 'wastebasket diagnosis' that is applied once a doctor has eliminated the treatable conditions. Well, it's at least a possibility, IMO.

Carole C

Re: auto immune?

paula on 1/23/02 at 19:14 (071042)

i think i read something about oxandrin being tried for ms very recently. i could be wrong but you may want to go to google and check it out. i was on it for a little while for something else.

Re: auto immune?

Carole C on 1/23/02 at 19:42 (071049)

Thanks, Paula. That is so kind of you to let me know! I will be sure to check it out. I guess I'm sort of a health nut when it comes to MS, because right now I don't take any drugs for it. I'm of the opinion that with MS no matter what you take, or don't take, you have a pretty good chance of getting better (at least temporarily) because that is the nature of the disease. A lot of studies testing new medications for MS use less than 100 people (sometimes less than 30!) with no experimental controls and if half get better they proclaim great success. Of course, they might have got better results with no medicine sometimes. All the studies aren't this bad but as a scientist I get pretty horrified that some experiments would even be written up.

I haven't ever taken any medication for it yet, and luckily (knock on wood, keeping fingers crossed) I seem to be in a long term remission. Back when I was having problems, I was hanging on day by day letting the other patients be the guinea pigs. It didn't seem to do me any harm. MS is a terrifying disease to have when the tiger is loose. If I start being symptomatic again, I might try some medication to try to cage that tiger. However I'd still be quite cautious and hold off if I could.

Carole C

Re: auto immune?

paula on 1/23/02 at 19:49 (071051)

carol, i am so glad you are in a long term remission. it couldn't happen to a nicer person. sounds like your conservative approach is working for you and i hope it works forever for you. yeah, one wonders about most of the studies out there. seems they are for the drug companies to test three people for two minutes and declare it a winner. i'm not a big fan of drugs either.