Just starting out

[LisaInMidwest]

Hello,

I'm new. :-)

I just saw a rheumatologist for the first time on the second of February.  I was refered by my GP when I asked her if I could have something else going on (like chronic fatigue) because after over 3 years of being treated for Hashimotos I still have incredible fatigue and pain plus other symptoms. She sent me because  she said I could have developed another AI disease.
So, I wrote down all my symptoms and went to see him. Had a brief discussion  of symptoms and a brief physical  exam. He explained what blood tests he was going to order and why. Made an appointment  to come back for results in a week.

Friday was my revisit. All my blood work was normal. Two tests didn't get run so they drew again and he will call with results. Those are the ANA and RNP. If the ANA is positive he will assume it's from the Hashimotos unless it has some kind of significant pattern.

I did have small amounts of SSa(3.3eu) and SSb(1.1eu) antibodies but the lab range indicates anything under 25 is a negative result.

He said, since I have no markers for inflammation  (sed rate 20, normal range 0-20) he has no reason to treat. He offered no other diagnostic tests for Sjogrens. He said it's very likely I will develop another AI because I already have Hashimotos. But, because so far I'm seronegative he doesn't seem interested in persuing it any farther.

Rheumatologist are hard to find in my area and I don't know how to find one who will help.

I'm trying to decide if I need to keep looking. I am debilitatingly fatigued, have joint and muscle pain, peripheral neropathy, raynauds, and dry eyes and mouth, brain fog. I'm having ahard time working and doing stuff at home.

I'm just at a loss right now...I realize this flare will pass and things will get more tolerable again for a while, but it's hard to live this way.

:-)

[Joe S.]

Welcome to our group. You appear to be just at the beginning of your journey if it is Sjogren's. If it is, remember that on average it takes 7 years to get a diagnosis.

You can check our signatures for what we are taking. Before trying anything check for counter indications, side effects and drug interactions.

[LisaInMidwest]

Thank you, Joe!

Would you recommend I put my Dxs and med on a signature line for my posts too?

I know it takes a long time to get dxed. I kind of went through a mini version of that when I got my Hashimotos diagnosis. GP-hematology -neurology-endocrinologist.

Right now I'm focusing on strategies to improve  my quality of life. I'm looking at some products  for the dry eyes, mouth as well as some fingerless arthritis gloves for work. The fatigue is harder to manage.

Thanks again for the welcome!

Lisa

[irish]

I would search out an immunologist and if you would have to drive a distance I would pursue that to start with. I was referred to an immunologist about 11 years ago and it turned out to be the turning point in getting my other autoimmune and immune diseases diagnosed. I was put on IVIG in 2006 and am still on them.

The immunologist work with people with autoimmune diseases, genetic issues, ( which are more common than one realizes) immune deficiencies and allergies. All of these disorders are intertwined in one way or another and many people with autoimmune have immune dificiencies -- I ended up having 2 of them.

You should at least come out with more information and a better idea and what to pursue or treat. Also, keep in mind that some immunologists like too base their practice on the allergies so question the receptionist on the type of patients the immunologists see.. Good luck. irish

[LisaInMidwest]

Thank you, irish!

[Carolina]

Dear LisaInMidwest,

stay strong, live your life, carry out a plan for finding medical resources that can help you and respect you.

I lived with many damaged organs/systems for years, with no diagnosis.  I have an Immune System that damages me with something OTHER than autoantibodies...probably cytokines, but it isn't clear.

Once I discovered that my Immune System is deficient, but still attacking me.  I could finally understand what was going on.

I have IVIG every four weeks to strengthen my Immune System.  And I treat the symptoms of my damaged organs/systems as best I can.

I suggest that if your symptoms continue or progress, that you seek out a Medical Center that is part of a University Teaching Hospital with doctors that do research on all of the conditions that you may have.

This what I have done, and the Duke University specialist have been of great help to me.

Hugs,  Elaine

[LisaInMidwest]

Thank you, Carolina.

University  of Minnesota has some Drs that I might check with once I get all my lab results back from the local Rheumatologist.

:-)

[Joe S.]

Strategies:
Work as long as you can.
Don't Panic when pain hits.
Remember to breathe through your pain. (in "I Am", out "calm")
Bring an advocate with you to every doctor appointment.
Keep copies of ALL of your medical records including relevant tests, Xrays and Scans.
Do not file for Disability until you have a reliable diagnosis.
Get FMLA to keep working. You will have good and bad days and this helps with the bad days.

[LisaInMidwest]

Thanks Joe,

This is great advice. I don't have FMLA option,though. so far i've managed without it. I work for a very small business. I am lucky that they haven't  fired me and they still give me PTO even though I only manage to work 25-32 hours a week instead of the 40 hours it's supposed to be. I got sick about a year after I started working there. I used to be able to work 40+ hours no problem.
Luckily we've been able to manage financially with my working less hours, but it gets tight.

I do work as long as I can until i hurt too much and accept that I need lots of sleep it's just how it is and I try not to get upset about it but when it's bad it leaves no energy to help my kids with home work or even be awake when they get home from school.

I've been doing this for about 4 years now. Not very long compared to most of you.  :-) I do feel like it may be getting worse.

I know Ijust need to keep doing the best I can.

[Jasper]

Lisa .....

If you have Sjogren's Disease symptoms, and it sounds like you do, then you probably would benefit from getting a minor salivary gland biopsy (lip biopsy) to confirm the diagnosis, especially if you have sero-negative SS-A.

The salivary gland biopsy is the gold standard for diagnosing Sjogren's Disease. However, it is imperative that the biopsy be done by an ENT or oral surgeon who is very experienced in doing the biopsies. It is also imperative that the pathologist who interprets the salivary gland specimens be very experienced in interpreting salivary gland pathology. If you get an inexperienced ENT or oral surgeon or an inexperienced pathologist, the lip biopsy may be done incorrectly, not enough salivary glands may be removed, or the speciment may be incorrectly interpreted.

It sounds like you are within driving distance of the U of Minnesota. I have an excellent ENT and an excellent Rheumatologist at the U of MN.

My ENT (at the U of MN) is Dr. Holly Boyer. She does salivary gland biopsies.

My Rheumatologist is Dr. Parastoo Fazeli. She is the director of the Lupus Clinic at the U of MN and she is the Director of the Rheumatology Fellows program.  She sees Lupus and Sjogren's patients at the U of MN. She is busy, but she does see new Lupus and new Sjogren's patients. However, to get an appt. you will need to get past the general appt. clerks.

My suggestion would be to get a referral to Dr. Holly Boyer in the ENT department and get a salivary gland biopsy done. (You may not need a referral to see Dr. Boyer, but Dr. Boyer may want a referral so she has your history and the reason you need a biopsy.) If the biopsy is positive, ask Dr. Boyer to refer you to Dr. Parastoo Fazeli in Rheumatology.   Dr. Fazeli will want all of your records sent to her, at least, pertinent records, and she will need a referral either from your own doctor or from Dr. Boyer. I just think it would better facilitate getting an appt. with Dr. Fazeli if you get the salivary gland biopsy through Dr. Boyer and then have Dr. Boyer refer you to Dr. Fazeli. They are in the same physician group (U of MN Physicians) and refer to each other. All of your records would be in one data base. Plus, they are both excellent physicians in their respective fields.

https://www.mhealth.org/providers/boyerholly-1218072974

https://www.mhealth.org/providers/fazeliparastoo-1940760694

I have seen both of them and they are competent, knowledgeable, and caring. Dr. Fazeli is my Rheumatologist and I am getting excellent care. She is actually treating me for my Sjogren's and I have vastly improved since my initial visit with Dr. Fazeli almost 4 years ago. I am currently on Rituximab and am doing extremely well. I actually now have a life, which I did not have 4 years ago.

Feel free to send me a private message if you wish.

I wish you the best for the future.

[LisaInMidwest]

Jasper,
This is great information, thank you!
I read an article by Dr Fazeli on seronegative Sjogrens and it's cool that she is your doctor!
I did not know about Dr Boyer and was wondering about how to find a competent Dr for a lip biopsy if I wanted one. This is very helpful.

[LisaInMidwest]

Received a response from U of Minnesota Rheumatology Clinic. They are not accepting any now patients at this time. even with a referral from my Dr.

My ANA was positive. The Rheumatologist told me to come back in a year because he's going to assume my Hashimoto's is responsible for the ANA so, at this time he has no proof anything AI is going on...

[Jasper]

Lisa .....

Your PCP could refer you to Dr. Holly Boyer, ENT at the U of MN, for a salivary gland biopsy. If the salivary gland biopsy is positive, you could ask Dr. Boyer to refer you to Dr. Fazeli.

They may not be accepting you because you do not have confirmed Sjogren's Disease. If you have confirmed Sjogren's Disease (confirmed by positive lip biopsy), and you are referred to Dr. Fazeli by Dr. Boyer, you may be able to get in to see Dr. Fazeli. At my last visit in February of this year she told tme that she is still accepting new Lupus and new Sjogren's patients although the wait time for an appt. is about 5 months. 

[LisaInMidwest]

"the clinic isn't accepting new patients unless they have a confirmed diagnosis of Lupus, Scleroderma, or Dermatoyositis"

[Kell]

 Jasper.
Thank you for the doctors recommended to LisainMN. If Drs Fazeli and Boyer aren't accepting new patients, do you have another recommendation in MN? I am about a 1year into my journey without a dx but with a recent flare of symptoms. Where can I find info on the testosterone and sjgogren connection?
Thank you!
Kelly