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Old 12-04-2009, 01:55 PM #1
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Question Sjogren"s disease along with ALS?

I was recently diagnosed with Sjogren's disease, after a blood test and a Biopsy of my inner lip.
I was wondering if this is something other members have experienced along with their ALS diagnosed.?
I did not know if it was common, or just another of my Aby-normal quirks.
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Old 12-04-2009, 02:18 PM #2
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Default Re: Sjogren"s disease along with ALS?

Capt.Al, I am so sorry to hear of this! I haven't heard of it before (I had to google it.)
I hope that you are only experiencing milder symptoms of it.
It's nice to have you back! We have missed you.
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Old 12-04-2009, 04:21 PM #3
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Default Re: Sjogren"s disease along with ALS?

Capt Al, You already know my story, but for the sake of the forum's information pool...

I was originally treated for Sjögren’s Syndrome. (It is pronounced show-grins). I had one lip biopsy of a salivary gland which showed minimal inflammation, not diagnostic for Sjögren’s. The doctor explained that they know from studying cadavers a certain percentage of anyone's salivary glands will show minimal inflammation. I had a repeat biopsy which was completely negative, and of course about a gazillion blood tests for the antibodies to Sjögren’s (as well as all other autoimmune diseases). Actuality they were repeated only 6 times (maybe 7) but it felt like more LOL.... all were negative for it, or anything else.

Its kind of funny, I started out at my GP who ran the antibody tests and said that because they were negative I didn't have it. But, after I'd been on the diagnostic merry go round for a while, I heard the exact opposite. The specialists were assuring me that just because they were negative didn't mean I didn't have it.

Eventually, the combination of always negative lab results, along with a complete lack of response to aggressive treatment by medications, and other problems I had which were greatly overshadowing my dry eyes and mouth, led me to a definite NO Sjögren’s diagnosis.

Sjögren’s Syndrome can be so severe that it will infiltrate the nervous system, as well as become a systemic disease and affect many organs throughout the body. Typically the dryness will affect all secretory glands of the body before it moves on to the nervous system. It can even cause dementia.

For those who have dry eyes and dry mouth, it is interesting to note that cranial nerves (not their motor function, however) are responsible for these secretions. These specific nerves are the same ones that show high involvement as far as my motor impairment goes.
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Old 12-04-2009, 04:25 PM #4
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Default Re: Sjogren"s disease along with ALS?

Capt. Al ... it never rains but it pours, right? As if you don't have enough to deal with! I hope it is not too bothersome.

Hang in there.
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Old 12-04-2009, 11:31 PM #5
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Default Re: Sjogren"s disease along with ALS?

capt Al,

Yes, I am abby-normal also. I was diagnosed with Sjogrens about 9 yrs ago.
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Old 12-05-2009, 12:37 AM #6
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Default Re: Sjogren"s disease along with ALS?

good to hear from you...so sorry for a double whammie
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Old 12-07-2009, 02:27 PM #7
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Smile Re: Sjogren"s disease along with ALS?

Quote:
Originally Posted by rose View Post
Typically the dryness will affect all secretory glands of the body before it moves on to the nervous system. It can even cause dementia.
Yeah, you are the first to explain my Aby-normal with a reason. I finally have something to blame it on.

On the serious note what types of treatments, drugs, etc. help with this if any? Is there a specialist I should go to for this. like maybe Rhematoidologist? Sry for the spelling.
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Old 12-08-2009, 09:27 AM #8
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Default Re: Sjogren"s disease along with ALS?

Hey Al, I think I'd put this in our pm's to each other, but just to make sure, yes, it is a rheumatologist that you should see. In your message you said the VA did not have one on staff, (which does not surprise me, sadly)

Is there a way, because they do not offer this specialty, that you can still be referred to a private practice to be seen? Perhaps inquire if they ever have a visiting one? As more women than men tend to have autoimmune disease, and more men than women are veterans, with the financial hit your region has experienced, I would not expect them to be adding this type of specialist back, but you would still really benefit from being under the care of one.

Plaquenil is the #1 drug used to treat it, combined with prednisone. An added plus is that Plaquenil is a quinine, so it will help with cramps if you still get them. (Its the only area it helped me!) Both of these require would require you to have some reguar monitoring though. Not only to check for adverse reactions, but to adjust dosage.

Restasis eye drops will help with the dry eye, because your dry eye is caused by inflammation. Evoxac will increase salivation, but this may not be what you want, what with the ALS.
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Old 12-08-2009, 02:41 PM #9
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Default Re: Sjogren"s disease along with ALS?

Quote:
Originally Posted by rose View Post
Hey Al, I think I'd put this in our pm's to each other, but just to make sure, yes, it is a rheumatologist that you should see. In your message you said the VA did not have one on staff, (which does not surprise me, sadly)

Is there a way, because they do not offer this specialty, that you can still be referred to a private practice to be seen? Perhaps inquire if they ever have a visiting one? As more women than men tend to have autoimmune disease, and more men than women are veterans, with the financial hit your region has experienced, I would not expect them to be adding this type of specialist back, but you would still really benefit from being under the care of one.

Plaquenil is the #1 drug used to treat it, combined with prednisone. An added plus is that Plaquenil is a quinine, so it will help with cramps if you still get them. (Its the only area it helped me!) Both of these require would require you to have some reguar monitoring though. Not only to check for adverse reactions, but to adjust dosage.

Restasis eye drops will help with the dry eye, because your dry eye is caused by inflammation. Evoxac will increase salivation, but this may not be what you want, what with the ALS.
i thought i heard people with als should not take prednisone
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Old 12-08-2009, 07:51 PM #10
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Default Re: Sjogren"s disease along with ALS?

Capt Al ~ Sorry to hear that you have another bothersome disease to add to ALS. It is definitely not fair, especially for someone as nice as you! I hope the doctors will prescribe meds to eliminate these symptoms for you.

Take care.
Pam B in Va
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Old 12-11-2009, 05:03 PM #11
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Question Re: Sjogren"s disease along with ALS?

Thanks everyone for your suggestions.
I also have another problem that is not easy to talk about. Haas anyone suffered from bladder spasms. I use to have these every now and then but since I have been using a Cather all the time they are very frequent and very painful.
Sounds like my body has so much going on at one time it amazes me. I am not looking for sympathy, and I hate to complain when so many are so much worse offf than me, just maybe some answers. Seems like the Doctors do not have them.
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Old 12-11-2009, 05:10 PM #12
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Default Re: Sjogren"s disease along with ALS?

Hi my friend!
Sorry you are still having problems of this kind. I think we talked about this before - have you tried a condom catheter? I know a few PALS that have had very good success using them.
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Old 12-12-2009, 10:29 AM #13
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Default Re: Sjogren"s disease along with ALS?

Capt. Al, I have a friend with Sjogren's who is Swedish. She tells me that it's carried in Scandinavian people, if not just Swedes--can't remember. Meds have really helped her and other than fatigue, she's doing well.

I had the bad bladder spasms after trying too hard and too long to use a female urinal. It helped to give up coffee (which I read can cause spasms). Mine were 24/7 and at the same time, the bladder would not empty unless while I pressed hard on it, and then just enough to keep me from the ER. I have a clue of your agony. Is there any way you can get a supra pubic catheter instead of the foley? ....or Joel's suggestion of the condom cathether, even better?
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Old 12-15-2009, 11:04 AM #14
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Unhappy Re: Sjogren"s disease along with ALS?

I have tried several types and all gave same results. Even tried one called the Coude-tip catheter that has a slight curve or bend in the insertion tip. I could not keep the condom Cather on, it kept falling off in the middle of the night.
I have switched my treating physic an to the VA, and can only see him every 30 days. My home care nurse tested me for infection and said I have a bad Kidney infection. She has been trying for over a week now to get some antibiotics for me, with no luck.
The VA does a lot of good, but there are times like this when they fall apart.
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Old 12-15-2009, 02:26 PM #15
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Default Re: Sjogren"s disease along with ALS?

I am sorry to hear of your problems. I hope you can get some antibiotics real soon and get the problem under control.
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