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Sjogrens Topics => Living With Sjogren's => Topic started by: brizzo on November 22, 2019, 07:43:00 AM

Title: Saw My New Rhuem Yesterday and Now I Am Puzzled Beyond Belief
Post by: brizzo on November 22, 2019, 07:43:00 AM
I am puzzled...

I saw a Rheum yesterday. He is not convinced it is Sjogren's as of yet. All my tests for MCD came back negative with the exception of Anti-SS-B which came back at 2.3. He says that the Anti-SS-A is the definitive for Sjogren's and that the "B" is indicative of Sjogren's but also other Autoimmune diseases. He is now testing my Thyroid, for Dermatomyositis and other A/I disorders.

I know my limitations. I may have a decent knowledge base but I am not going to argue with a Stanford trained Rheum who is recommended by one of the best diagnostician's I have ever met in 22 years of being a Dermatology Rep. So, Dr. Su says that my symptoms don't 100% match. My Raynaud's might be caused by the Adderall. He confirmed that my eyes were dry. That surprised me. He knows about the neuropathy in my toes. The weight loss. The vascular changes. He is basing all of this on the look of my "hands" and the redness of my ears and face. He seems to be totally ignoring my sister's Lymphoma and my mother's, inexplicable, Multiple Myeloma.

He has ordered: CK Creatine Kinase, Aldolase, C3 and C4 Complement, Electrophoresis Protein with Reflex, Iron and Iron Binding Capacity and Ferritin.

I'll have the tests done. It's not an issue. It was the Derm who pronounced Sjogren's. I suppose Dr. Su the Rheum wants to be thorough. I have to add that his notes say: "I am not confident you have Sjogren's YET". and, "Sjogren's antibody not always specific to Sjogren's". So, it is not off the table.

In the end, they are both treated pretty much the same. DMARDS and/or Corticosteroids. It is just that Sjogren's is about 10-20 times more common than Dermatomyositis.

Does anyone have anything to add to this? Personal experiences? Similar diagnostic journeys? Any further information? You are all a huge, living repository of knowledge. I'd like to tap into that if I can.

Be well all.

Title: Re: Saw My New Rhuem Yesterday and Now I Am Puzzled Beyond Belief
Post by: irish on November 22, 2019, 09:52:56 AM
Another autoimmune disease that gets mixed up with Sjogrens a lot is Lupus. They are virtually kissing cousins. Also, even if you do't have a diagnosis of Sjogrens at this time keep in mind that most other autoimmune disease will eventually develop sjogrens as a tagalong or secondary issue. I have been tested many times for lupus...even my dermatopathologist has told me that he had me pegged for a "lupie" since the first day he met me.

Also, if you research most of the other collagen diseases such was the dermato--scleroderma-lupus and the others found during your search, you can scroll through the symptoms and most of them will list tendon involvement, C collagen disease is a collagen disease is a collagen disease!!!So many things that are similar. Don't know how the docs figure it out. The kidneys are involved in both Sjogrens and lupus but they are different per lab tests and other diagnostics.

DMARDS are used with good luck for many people but sometimes it takes other drugs. The immune suppressants or biologics can be necessary. Many if not most people who end up quitting work find that the lack of stress from the employment is not missed and they are able to rest more and enjoy life better. Consider starting some type of business if you need to quit your job. You have a lot of knowledge from your sales career and the number of people you have met over the years must be enormous. Stop and ponder the number of times you have said "wy didn't I think of that" about a lot of products or even packaging methods.

My brain is empty. At my age I have forgotten more than I remember. Hang in there. You sound like your rheumy is very good and you have access to many good docs so that should help. Do remember that there are many things we have that don't have a "find" or a "fix" and come and go. WE just adapt. Good luck. Irish

Title: Re: Saw My New Rhuem Yesterday and Now I Am Puzzled Beyond Belief
Post by: brizzo on November 23, 2019, 06:33:31 AM
Irish... you are so spot on. It is weird how similar many of the A/I disorders are. They all seem to have something in common with one another and... if you have one, you are going to, at least, present with some symptoms of another. None if it fits into a neat "box". An old friend of my wife and I, Dr. Beth, a Derm, was checking in on me and told me that the more vague the diagnosis, the better. That puzzled me. She said that when it all fits neatly into an easy to define box, the diagnosis is more severe. Now, I think, in a way, she might have been right and she also might have been trying to make me feel better. The fact is that my current level of research shows so much overlap that it is almost ludicrous to give them so many different names. It's all "subtleties". My eyes are dry as all "F" now. Then again... it's winter and the heat is on!!! Go figure?!

I'm going to wait for all of the multitude of tests to come in. I am also going to take advantage of a recommendation (if I can find the email) from one of the Rheums I have worked with in the past. She pointed me towards a Rheum who is running a Sjogren's clinic at UC Berkeley. It seems that Sjogren's is her "passion". If this starts to point more towards Sjogren's then I am switching my care to them.

Biologics are out for me. Well, if it is Rituxumab then I can do it but any of the TNFa's have to great a risk for Lymphoma and considering my family history... I'm not taking that chance. It's a shame the new IL-17a's and IL-23's are narrowly focused treatments. They are safe as houses and would effectively "damp down" my immune system. If this were PSA, I would be gold!!!!

Oh... start my own business?!?!, Irish, Irish, Irish... I've done that three times in my life. It is the MOST stressful thing in the world. OMG!!!! I'm giggling thinking of the last three times. I've put a plan in place. Yesterday was a bad "work" day. While they may not be able to get rid of me outright, I have a huge target on my back and the writing is on the wall. I'm for sure on the future "RIF" list. My wife is a savvy business person. We worked out a strategy and a timeline moving forward. With a two year window, which brings me to 60 y/o (26 months to be exact), I can set my mind at ease. Now it becomes a game... How long can I hold out if they are trying to make my life a misery and "manage me out" till the inevitable RIF and I wind up with a fat severance. They have been such pricks lately that it is now my mission in life to let their crap roll off me and make them frustrated as heck in trying to get rid of me. With the mind set of "I don't give a sh*t", I can bet you that my performance will shoot through the roof and it will make it even harder for them.

In the end, my body will dictate how long I can work. Right now... I think I can continue for the foreseeable future. Small chunks... Like, "Make it to January" then "make it my 401K dump in March" then "make it to the next March" etc... I can live with that and have a lot less stress.

I just hope my body cooperates.
Title: Re: Saw My New Rhuem Yesterday and Now I Am Puzzled Beyond Belief
Post by: SjoGirl on November 25, 2019, 05:30:14 AM
Brizzo 12 years, about a half-dozen rheumatologists, including one at Johns Hopkins, several hematologists, etc. I still don't really know what is wrong with me. Early on all my symptoms showed Lupus, but then I was diagnosed with Sjogrens, then with undifferentiated connective tissue disease then seronegative RA and now back to Sjogrens and OA. I also have neuropathy and a host of spinal issues.

The few things everyone seems to agree on are that: I have connective tissue disease, I have OA, and I have neuropathy. Hopkins and others told me to take Plaquenil because it is used for many forms of AIs; however, I could not tolerate it (tried twice). I have been on Imuran for quite a while and it helps a great deal. I actually have saliva now, my eyes are still dry (have you had a Schirmer's test, that was what helped confirm my diagnosis).

I used to take Gabapentin for nerve pain but that has subsided. I was also on Celebrex but with increased exercise and other ergonomic adjustments have been able to take just Tylenol.

I did also eliminate gluten, most dairy, most soy, and eat as healthy as I am able (life it short I am not giving up everything).

What I have found is that I do the best I can and just keep on keepin' on. I own my own business and work PT and may soon go back to PT because it's a challenge to reliably find clients/customers. I wish you some clarity from your tests.
Title: Re: Saw My New Rhuem Yesterday and Now I Am Puzzled Beyond Belief
Post by: katie1111 on November 25, 2019, 06:24:30 AM
I have never matched the symptoms of sjogrens properly.  According to which ever of my doctors you speak to I have "Sjogren's like symptoms," symptoms suggestive of Sjogren's", a "Sjogren's mouth", "definitely Sjogren's", "well something autoimmune going on."...

According to what I've read, at least 25% of patient's with sjogrens don't meet the criteria.  As long as I am treated for Sjogren's I don't care what they call it.

Title: Re: Saw My New Rhuem Yesterday and Now I Am Puzzled Beyond Belief
Post by: irish on November 25, 2019, 06:24:19 PM
Just something to mull over. A doctor years ago (who and where I do not remember now) said that he felt that Sjogrens is the main autoimmune collagen disease and that all the others are cousins. He felt that they all had so many symptoms that were similar but Sjogrens had the propensity to have more of the symptoms which in his mind made it the "head honcho" for this grouping. I have thought about this a lot and it sure does seem like there could be a shred of truth to it. Time will tell. Irish