Author Topic: Hello!  (Read 2145 times)


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« on: September 02, 2010, 10:19:03 PM »
Hello everyone.

I have been feeling awful for several months, almost a year really... Finally got tired of my doctor and went to see a specialist out of town.  He thinks I might have Sjogren's and my Anti-Alpha Fodrin IgA was high.  I am trying to coordinate the lip biopsy now, but I don't seem to have a dry mouth, at least not all of the time.  I do seem to have a dry throat, and sometimes feels like I can't swallow...

I found out I have NO detectable amount of B2 in my system, Low in Iron, Ferretin, B-12 and Vitamin D.  So wondering what that all means and possible gastroparesis?? I really need to learn more about the symptoms, and can't seem to find more info other than the medline and pages (most of it out there is just similar info).

I have also been dealing with severe pains, almost constant pain for 5 months now.  Tramadol takes the edge off it, but when it is severe it doesn't seem to help at all.  I seem to have tissue swelling various parts of my body, hands in particular.  All of my arthritis tests came back negative and it's not my joints that swell.  Really tired of feeling like garbage and wondering what will happen next....  Have been unable to consistently work (even a PT job) since April.  Really difficult for a person who is usually a work-a-holic.

I have all kinds of symptoms:

  • tinnitus, both ears
  • loss of hearing, high frequencies in my left ear
  • random pain and swelling in fingers, feet, legs, arms that is accompanied by veins raised up in the area of pain
  • increased migraines
  • odd taste in my mouth, difficulty swallowing sometimes, feels like throat is not cooperating
  • difficulty with urinary tract, frequent UTI's at times
  • problems with intestinal tract, (low absorption of vitamins), frequent diarrhea alternating with constipation
  • extreme fatigue
  • Ophthalmologist told me my eyes are extremely dry, far dryer than the average person
  • visual disturbances, blurred/slightly doubled vision, despite the eye doctor saying my eyes are fine... (different doctor than the one that said my eyes are dry)
  • mammogram showed enlarged lymph glands near breast
  • recurrent, difficult to get rid of, sinus infections - doctors have given me saline spray and steroid sprays off and on for over a year

I am glad I found this place and hope that diagnosis and treatment for me is quick and successful... *sigh*  One can dream right? 



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Re: Hello!
« Reply #1 on: September 02, 2010, 11:20:59 PM »
Hello Ynevar,

Welcome to the board. I hope you find the answers you seek and they're good or at least you're be able to make the best of them.

I wasn't familiar with Anti-Alpha Fodrin IgA. Looking it up I found out it is a relatively new early warning of Sjogren's. Thanks for
teaching me something new.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.


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Re: Hello!
« Reply #2 on: September 03, 2010, 05:42:27 AM »
Hello Ynevar,

Welcome, and thanks for the list of symptoms in such a readable format!

I share most of them with you, BUT continue to be sero negative on every single test imaginable.

ANEMIA:  I'm also anemic unless I take iron.

VITAMIN B I've been taking both a multi vitamin and a B complex supplement for years, so no problem with vitamin B, however.

SINUS PROBLEMS  I saw an otolaryngologist recently who found a deviated septum and suggest that I might have sinus blockage as a result.  Which may be the cause of my constant sinus headache.

I rejected the idea of a CT Scan cause I didn't think I wanted surgery.  But I'm rethinking that now.

I guess surgery for a deviated septum isn't very drastic, so if the deviated septum is causing blockage, i might consider surgery.

PAIN AND TINGLING HANDS AND FEET:  This past week I've had such fatigue and pain from both the tingling hands and legs and my severe osteoarthritis.    The bottoms of both feet are numb.

FATIGUE:  It is very exhausting when everything is acting up at once.

HEARING LOSS:  I'm getting new ear pieces for my hearing aids to make them fit better and more easily. 

TINNITUS:  I don't know how old you are, but my hearing loss started with high frequencies and tinnitus and now I have a 70 decibel loss in low frequency in my right ear.   The tinnitus in that ear has increased and become more complex and annoying, as well.

DOUBLE VISION:  I now also need to wear glasses because of the changes in my vision, which the ophthalmologist says are due to changes in the shape of my corneas.

UTIs:  I also have been diagnosed with Interstitial Cystitis, which is an auto immune condition of the bladder, causes inflammation, pain and frequent UTI's.

DRY MOUTH DRY EYES:  I've had terribly dry eyes and dry mouth for 8 years.  I take Pilocarpine for my mouth and use Systane and Nature's Tears for my eyes.

INTESTINAL PROBLEMS:   I have had two episodes of blockage of my intestines the second one I went to the hospital and had confirmed with a CT Scan.   They are very painful, and if they don't resolve on their own (they both did) surgery is required.  I also get very constipated.  Sigh.

I haven't been exercising regularly for the past two months because we've had so much company and we've been moving AGAIN, the third time in 5 months!   This time we're in our new house and here to stay.  I'm NOT moving again for sure.

Do keep us posted, Ynevar.


Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-


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Re: Hello!
« Reply #3 on: September 03, 2010, 05:51:55 AM »
Hi Ynevar  :)

Welcome to Sjogren's world.

I hope your doctor is doing all the appropriate blood tests now. The lack of B12 etc could indicate pernicious anaemia but I'm not a medic so that's more of a guess on my part. Whether you have Sjogren's or not I would think you could be made to feel a whole lot better than you do just now if you get supplements for what's missing.

I hope you find the site useful.

Take care - Scottie  :)   (our home page)   (find our chat times here!)  (way to chat + nickname and #Sjogrensworld)

Never do tomorrow what you can put off till the day after tomorrow!


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Re: Hello!
« Reply #4 on: September 03, 2010, 06:22:28 AM »
Hi Ynevar

Just wanted to jump in and welcome you to our family here!  You will find everyone is knowledgeable in many topics.
Good Luck
Female 64 yrs. old with:~Lymphoma ~SJS~, Fibro, Neuropathy, Spinal  Stenosis, Degenerative Discs, Shingles Arthritis, Hypo-thyroid.
Rituxan, Synthroid, Lopressor, Vasotec, Zantac, Zyrtec, evoxac, Lexapro, Neurotin, Ambien, Zanaflex, Voltarm, Vicodin, fish oil, Centrum vit.,  CoQ10, vit. D, Miralax


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Re: Hello!
« Reply #5 on: September 03, 2010, 06:41:51 AM »
Welcome...glad you found us.  Everyone here is quite helpful.



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Re: Hello!
« Reply #6 on: September 03, 2010, 07:46:57 AM »
Howdy Ynevar, welcome to the family.  I hope you get your answers soon.  Be persistent with your doctors. write down what they say.  Do your own research.  The Net is a great place to find answers.  When you see your doctors have a written list of questions for them.  You need to be your own best advocate when dealing with your doctors. 

Search this site for past posts on your symptoms.  You will find a lot of great information here.  Any time you need support or just need to vent, you will always find an ear here.

Welcome again
Every day is an adventure, waiting to happen.


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Re: Hello!
« Reply #7 on: September 03, 2010, 03:26:28 PM »
Hi Ynevar:

Welcome to the board too. 

You have quite a list.  Must be really frustrating. 

One of my old post - Stephen Ministers - who are confidant friends you can talk to- they are trained as listeners.  You can find them at your local churches.  This might provide you with a more dedicated, personal help on a regular basis.  Best of all, it is FREE.

Give it a thought!



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Re: Hello!
« Reply #8 on: September 03, 2010, 09:08:02 PM »
ynevar, Interesting name you have there!!! You sure have a slug of issues that sound like autoimmune and sjogrens. I am first going to mention another thread that I started a few days ago on Susacs syndrome. It should be on page 3 or 4 by now I would think.

This syndrome was shown on Mystery Diagnosis this past week and boy did it ever ring some bells. Read it if you can. The long and short of it is that this syndrome affects both the eyes, ears and the brain. One can lose vision and/or hearing and the brain involvement is not a good thing to have.

It was identified and named by a doc in 1975 and the treatment is steroids, immunosuppressants and IVIG if necessary. Sounds like it is far more common than we think but that the docs are not picking up on it. It affects the blood vessels that supply blood to eyes, ears and brain.

The difficulty swallowing can be caused by the dryness in the throat and it can also have a neurological componet. It helps to drink with a straw and to turn your head to the side when you swallow. I have swallowing issues that are neurological and had to go to speech therapy for swallowing education.

The gastroparesis demands the attention of a Gastroenterologist to help identify and treat this problem. The tinnitus is also a noise that the brain comes up with. Really a weird thing and many people with sjogrens and other autoimmune diseases have it. Taste pervasion and loss of smell are also neurological issues.

I have had very sore left breast for 35 years or so and would always feel swelling when I would check breasts. I could feel the swelling in the form of a swollen breast and swollen tissues under the arm. Just in the past couple of years they have picked up swollen lymph node in the left breast that seems to come and go. Keep track of it from now on as well as any other lymph nodes in neck, groin, etc.

Sinus infections are very common in people with sjogrens. They are also a possible sign of an immune system deficit and I would ask my ENT or GP to check your IgG levels. The levels subclass 1,2,3 and 4 are the ones that can be low and indicate the body doesn't have enough cells to fight off infection. This is a relatively new issue that is just now being recognized. It can either be a genetic problem or it can be an immune problem that is caused by the screwed up autoimmune system.

I have low t-cells and have suffered a huge amount of infections and taken well over 100 antibiotics in my life. Just a little side note. Long ago when I was starting to have more than my usual infections (which were way too many even then) I started to write down on my little purse pocket calendar when I started antibiotic and finished and type and sometimes more info if necessary. It has really come in handy to have those calendars from 1994 and up when I am working with the docs.

Anyway, if you are prone to infections it is preferrable not to use the steroids too much. I use them also on occasion. I have also been prescribed Astelin nasal spray and that helps to reduce the swelling also but in a different way. If you aren't irrigating your nose please talk with your doctors about this as it really makes a huge difference. It is a big pain in the you know what but really doesn't take all that much time if you use a Neti Pot. It helps to keep the nasal cavity more moist and washes out the dried mucus that tends to harbor and grow bacteria.

I hope that you can get all your issues straightened out and get to feeling better. Please talk with your ENT and your opthalmologist about that Susacs syndrome as oral steroids could most certainly nip this before it gets worse. Also be aware that the doctors are starting to use plaquenil much, much earlier now and it helps with the pain and fatigue and other things. It does take a few months to kick in so usually people will also be put on the steroids for comfort until the plaquenil kicks in.