Author Topic: So Many Variables, Too Few Answers...  (Read 1125 times)


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So Many Variables, Too Few Answers...
« on: November 30, 2019, 12:51:39 PM »
Anti-SS-B comes in at 2.3. Derm rings the Sjogren's bell. Rheum says not convinced yet that it is Sjogren's and not some other Autoimmune disorder. Rheum does tell me I have dry eyes. Waiting on further blood test results. Trying to write out symptom list... The number of variables is unreal:

1) Dry eyes: Sjogren's or forced air heating and winter? (Then again, was waking up with gunky eyes even in the summer with no a/c on).

2) Extreme Fatigue: Is it Sjogren's or is it the fact that I am, for some inexplicable reason, now unable to sleep and am waking up at 3:30 am. I mean, is it Sjogren's or is it stimulant therapy for adult onset ADHD? The again, I fall asleep with no issues.

3) Joint Pain: Is it Sjogren's or is it over-training (I WAS doing 1,100 push-ups a day... now, none)?

4) Dry skin: S or winter?

5) Foggy brain/Memory issues: Sjogren's or ADHD?

6) Pain in hands... swollen knuckles: Well this one is new.

7) Raynaud's" Sjogren's or the side effect of Adderall?

8) Night Sweats: S or something else?

9) Difficulty Swallowing: Intermittent... Adderall or Sjogren's?

10) Vascular Changes: Sjogren's or is it that I dropped down to 15% body fat?

11) Weight Loss: Sjogren's or is it the Adderall (then again, I have been eating about 3,300 calories a day).

12) Numbness in Feet: Is it S or is it a neuroma?

I wish there were a definitive test. I beelive that I am going to get an initial diagnosis for "Sjogren's like Symptoms" or, "Mixed Connective Joint Disease" or, something else autoimmune.

ARGH!!!!! ARGH!!!!! ARGH!!!!!


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Re: So Many Variables, Too Few Answers...
« Reply #1 on: November 30, 2019, 03:12:23 PM »
If you sit and worry about getting a diagnosis you will drove yourself crazy. I speak from experience. I started with illness in 1964 and it continues off and on enough to affect my life and started getting worse in around 1980. So many trips to the doctor in the next 17 years and also horrible teeth problems and many, many root canals, and abscesses. Hubby was getting sick of the trips to the doctors with no luck and I told him I would go myself cause I wanted to know what they would put on the death certificate for cause of death. Took til 2003. Actually, I think one has to wait until the starts aline. Sorry for being facetious, but a sense of humor does help cause it is heck going through the waiting period.

I just listened to a good medical tape today and they talked about the fact that there is more and more Hashimotos lately without any hypo or hyper thyroid disease. I will have to find it and put the link on this thread. Irish


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Re: So Many Variables, Too Few Answers...
« Reply #2 on: December 01, 2019, 04:08:43 PM »
It sounds as though you had been engaging in an extremely challenging exercise regimen and maybe also were dieting. Is it possible that your body is worn and overworked?

What is it that leads to you think that it might be SjS instead of something else?

FYI I am not meaning to be critical, rather trying to help you parse out answers to some of the questions you posed.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.


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Re: So Many Variables, Too Few Answers...
« Reply #3 on: December 02, 2019, 06:35:56 AM »
I hate to toss a Swiss Army knife ( much more complex than a monkey wrench) into the mix, but even if you have a positive diagnosis of Sjogren's, that doesn't rule out the possibility of any of the symptoms being caused by something else. It isn't uncommon to be diagnosed with more than one Autoimmune condition, and never forget that just because you have (or possibly have) Sjogren's, you are still susceptible to injury or unrelated medical conditions that can cause similar symptoms, for example a rash from a bacterial infection.
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Re: So Many Variables, Too Few Answers...
« Reply #4 on: December 03, 2019, 07:58:37 AM »
I have had Sjögrens since 1992. I have had numerous challenges, including a severe flare-up in October this year, leaving me with terrible weakness in my legs.
The main thing to me, however, is the ruinous fatigue. For 5 years now, I have been treated with Adderall intermittently. But since my flare-up, I have been on it daily.
This has changed my life! I am much more attentive, have regained my happy personality, and my fatigue is relieved for 8 hours. My weak legs are also temporarily much better.
Provigil is also good, but it lasts too long (10 hours).
Also, you must exercise.
A Neurologist is prescribing this.
I cannot emphasize enough to Sjögrens patients to try it.

Best regards
« Last Edit: December 03, 2019, 08:04:36 AM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage


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Re: So Many Variables, Too Few Answers...
« Reply #5 on: December 03, 2019, 09:09:03 PM »
I finally found my notes from the video I watched on tube about Hashimotos. I had mentioned in my post above that I would leave the link and some info.

I didn't take very good notes but the doctor was Dr. Martin Rutherford and the lecture was on Hashimotos. I think they are located in Reno. The other doctor was a Dr. Gates who is a functionalchiropractor and works with really intense effects of illnesses including autoimmune issues.

The lecture was interesting and not the answer to all the AID problems but it answered some issues of health and symptoms that I have wondered about. These docs study a lot of info and said that brain fog is immune in etiology and related to inflammation which cuts down on blood flow. They described the brain fog very well. Also, talked about the depression of Hashimotos and the effect on the cerebellum plus the insomnia and aching and the balance issues.

No doc has ever explained the symptoms of Hashimotos to me. Also, one doesn't have to have hypothyroidism but can have the symptoms of Hashimotos. They also talked some about non celiac gluten sensitivity from Hashimotos.They is the first time I have seen this mentioned anywhere. Hope you can find the speakers. Irish


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Re: So Many Variables, Too Few Answers...
« Reply #6 on: December 06, 2019, 05:07:05 AM »
Dear brizzo,

I understand the 'variables' and the frustration.

You do have dry eyes year round and your doctor confirms that diagnosis.  So that's definite. 

The other symptoms are more 'iffy' since you note several possible conflicting causes, and you haven't noted how long you've had them.

Your fitness training, and the medical treatment of ADHD are additional variables, of course.

In my case I was finally diagnosed with a fairly rare immune disorder, CVID, which is a Primary Immune Deficiency Disease   I don't have an autoimmune disorder, which involves activity by autoantibodies, but my Immune System is both deficient and does attack my own body. 

I have a host of conditions, none of which ever had an accurate diagnosis, or lacked understanding of the cause, until my Immune Disease was diagnosed.

My immune deficiency is addressed by IVIG, every four weeks.  However, the attacks on my own body by my Immune System (using cytokines, not autoantibodies) cannot be treated or cured.  I can however treat the symptoms of dry eye/dry mouth.  The multiple neuropathies and chronic fatigue have no treatment, however.

One of the key ways in which to manage life with multiple conditions is to practice relaxation techniques to help calm your mind and the rest of your body.  Remember to breathe!

I wish you well.

Regards, ElaineD (aka Carolina)

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