Confused newbie

[ShannieBump]

Hi members! This is my first official post, though I've been reading posts on many sites since my first symptoms began 2 1/2 years ago. I still do not have a diagnosis but my rheumatologist feels certain it is autoimmune related. My very first symptom was numbness and tingling in the soles of my feet, especially my heels. Sometimes it was so painful that I couldn't stand. I made an appointment to see my GP who sent me to a neurologist. I had a normal EMG but bloodwork revealed a high rheumatoid factor, so I was then referred to the rheumy. Joint pain soon followed, then dry painful eyes. Schirmers test revealed chronic dry eye, so I started with Restasis. I also ended up with lower punctal plugs, but eyes are still rather bothersome. I also began having random muscle pains and tingling sensations in my arms and legs. My hands go numb when I hold something and sometimes hurt just holding a book or magazine up. My mouth feels like a suction cup these days! I also experience dizziness, fatigue, and trouble thinking/focusing. I have ringing/pulsating in my ears and shortness of breath. My bloodwork always comes back normal, but at my latest appointment I had a slightly elevated ssa. RH factor was negative this time. I've read that these levels fluctuate but I'm confused to whether or not their presence in the first place means anything? I have a lip biopsy scheduled next week and apparently this is not definitive either. I would love to hear your opinions, feedback, and similar stories! Thanks for reading my rambles.....I'm sure I forgot something!<3

[Carolina]

Dearest Shannie,

Welcome to our forum.

You have all the symptoms of an autoimmune/immune mediated disorder.  Or disorders!

Read my signature line and you will see the neuropathy, the fainting, the tinnitus, and so on.

Hugs,  Elaine

Keep posting!

[ShannieBump]

Thanks Carolina for your kind welcome! I'm curious how long it took for for your diagnosis and what were your first symptoms? Did bloodwork confirm the diagnosis?
Sorry, I have so many questions! I'll stop here for now;)

[Carolina]

Shannie, I'm not a typical example of those with Sjogren's Syndrome.  Although that is an odd thing to say since each person with Sjogren's is actually unique.

But, I was diagnosed right away by my Rheumatologist, whom I was seeing for my severe osteoarthritis.

I had  suddenly developed severely dry eyes and my contacts caused serious erosions of my corneas.  She saw my dry eyes and dry mouth, and immediately said 'Sjogren's' and prescribed Evoxac and Restasis.

She said my serum didn't show signs of Sjogren's, but that didn't matter.  And a lip biopsy was unnecessary.

She was a brilliant Rheumatologist, trained at Yale Medical School.

I found out later that there are a lot of stupid Rheumatologists who only see Sjogren's when the blood work confirms it.

Actually, technically what I have is Sicca, since it isn't caused by auto antibodies attacking my body, but rather my basic Immune System produces cytokines which do the damage.  I don't have auto antibodies.

I have Primary Immune Deficiency Disorder.  The sort I have is called CVID, and about 25% of those of us with CVID also have an immune system that attacks our bodies.  It is way weird.

After the first diagnosis with severely dry eyes and dry mouth, I began developing an entire series of other problems.  Many seemed unrelated to each other, but eventually I realized that they were all the result of my immune mediated problems.

Although I developed lots of pain and discomfort, I never sought Plaquenil or Methotrexate which give so many with Sjogren's relief.  This was partly because I didn't have the proper blood work, and also because it just didn't seem 'the right way' for me to go.

As it turns out my Immune system is actually deficient.  I have monthly infusions by IV of IgG, one of the basic antibodies of the Immune System.  This strengthens my Immune System and keeps me from getting sick all the time, which was happening before I started the IVIG.

My 'case' is unusual.  Most people with Sjogren's Syndrome, Shannie, have a fairly simple experience.  They do not post here, because they don't need any additional support.

Autoimmune conditions generally produce: profound fatigue, pain, and depression.  But not everyone has these co-conditions to the same degree.  These co-conditions are the results of the inflammatory repponse which is generated when auto antibodies attack your body (as they do to damage your tear and saliva producing organs).

It sounds to me that you may be having more than a simple case of Sjogrens, or Immune dysfunction of some sort.  In which case you will find support, information, suggestions for coping, and generally become part of our forum.

Hugs,  Elaine

[ShannieBump]

Yes, seems I have seen two of these "stupid" rheumatologists who insist diagnosis relies on bloodwork. I am a bit anxious about what this upcoming lip biopsy will reveal, praying for some confirmation. I don't know what the next step will be if those tests turn up normal too. That's the most difficult part of this ordeal for me, knowing that something is wrong with your body yet all tests show normalcy. Makes me feel a little crazy sometimes....

So glad you reached out with your story and advice but hate to see the list of issues you're dealing with. I don't understand it all but find it very interesting! I'm still learning!  Thanks again for your response, have a great day!

[SjoDry]

Shannie,

Welcome. Sorry you found us under these circumstances...but I guess that is how we all end up here. While most of us have similar symptoms, it is, as Elaine says, different degrees for everyone.

There are many of us on this site who have been through a handful of docs before finding the right fit. My situation is similar to Elaine, in that I have CVID and do not produce the antibodies needed for those Rheumatologists who diagnose Sjogren's ONLY on the basis of those blood markers. You can have flaming symptoms & a doc that does not offer any of the typical Sjogren's meds...because the markers are negative. Maddening.

I also had the lip biopsy at the NIH. After having this test performed by one of the premiere medical facilities in the country, by a very skilled Dentist, my results were still vague, & I was left with no answers. For instance, I flunked some of the eye tests (but not enough to meet the European/American Sjogren's Standard); had some irregularities from my lip biospy, but not enough to meet the European/American criteria. There are many folks who fall into this grey area. Even the Study coordinator at the NIH told me that they had so many people in that grey area, that they were doing another study just for that set of folks.

At the end of the day, no matter what the tests indicate, all that anyone can do is to treat the symptoms. So finding a doc who is on board with helping you to do that will be key. You have come to a great site. The folks are very supportive here because we all get it. We are all on this crazy journey together.

Hope you start getting some answers and more importantly, some relief....SOON! 
Take Care.
SjoDry

[ShannieBump]

Love the name, SjoDry!! Thanks for your response & information. I guess it's just a waiting game for me at this point. Just waiting for that one symptom or test result that sets the ball rolling. I continue to hear that my symptoms could be caused by many disorders but it sounds just like Sjogrens to me. I guess that's where the difficulty in diagnosis comes in, these AI diseases all tend to mimic each other.
So glad to have found this support group to communicate & learn with! Happy hump day to you all!