Hi...New here, Recently dx with SS at Mayo

[Kitt]

Hi, am new to this forum.. 

I was recently dx with SS at Mayo in MN.  I have dysautonomia, (both POTS and nuerocardiogenic syncope.)   Also have had Hashi's, CFS, fibro and interstitial cystitis since my 20's.

Have been seen at Mayo's for dysautonomia for a few years.  in the last year have had severe eye pain...Also eye dryness, dry mouth and extreme muscle and joint pain.  I began having icy pain in my arms and legs and hands and feet as well as numbness and stiffness.

The neurologist I see at Mayo's ordered a new sweat test.  This is the test where they sprinkle your body with a yellow powder but you in a box and turn up the heat.  The powder is supposed to turn purple.  Two years ago it only showed a small amount of neuropathy in my feet.  This time my body was almost entirely yellow...indicating extensive neuropathy.

The neurologist also ordered a salivary gland nuclear scan.  It was positive for Sogrens.  She ordered a skin punch biopsy to test for small fiber neuropathy but after having been at Mayo for a week of testing we needed to leave.

I'm scheduled for a return visit for the skin punch biopsy and appts with a rheumatologist and other specialists but after researching this site I feel I might be better off going to Johns Hopkins?

Has anyone with both neurologic issues and SS have experience at JH's?

Thank you in advance for any help you can offer. 

I'm in pain and exhausted beyond words.  Am guessing many others here are as well.

Best to all...Hoping tomorrow will be a better day for everyone,

Kitt

[Joe S.]

Welcome to this forum.

I am suprised you got an autimune disease diagnosis. That means that they have changed.

[Kitt]

Thank you for the welcome.

Am not sure what you mean by 'they changed.'

Have you been seen by Mayo or by JH's?  Thanks much!

[warmwaters]

Hi Kitt - sorry you're joining us, but you'll find a friendly and informative group here. I know some people have been seen by Johns Hopkins, so I'm sure they will chime in. If you have some questions, you might post something with the subject being John Hopkins, just to get folk attention.

I think Joe is referring to the impression that Mayo Clinic (and I'm not sure if it is specific locations) seems less likely to diagnose Sjogren's. We've had a few members who went there and felt very disappointed in the lack of answers they got.

Anyhow, welcome.

[Kitt]

Thank you Dora

I searched JH's on this site and found good things regarding SS and neuro issues.

Am sorry to hear others didn't have a good experience in MN.  Not sure what the issue is but I'll try and understand as I go.

Thank you for responding.  I continue to read about flares but my issues have been constant.  Just want to get the best treatment.  Don't care where.

Thanks again,
K

[warmwaters]

I don't experience it as flares much either. Most of the time I feel "bleh", and then occasionally I feel "more bleh". But it's not so much the clear  distinctions that some feel.

[Jasper]

Kitt ..... welcome to the forum.

I have not been to Johns Hopkins (Jerome Greene Sjogren's Center) but I have heard others say it is a wonderful place to go.

My suggestion would be to get an appointment with Dr, Julius Birnbaum. He is both a Rheumatologist and a Neurologist and is exceptionally competent and knowledgeable about Sjogren's and Sjogren's neuropathies.

I have heard him speak and have met him. He is wonderful.

There are some people on the forum who have  him for their doctor.

I believe you need to be referred and they will want your records sent to them for review before they see you.

One forum member, Anita, can give you much more information about autonomic neuropathy, Dr. Birnbaum, and Johns Hopkins Sjogren's Center than I can. Hopefully she will see your post and respond. 


http://www.hopkinssjogrens.org/about/our-doctors/julius-birnbaum-md/

http://www.sjogrensforum.com/from-the-doctor/neuropathy-in-sjs-review-by-julius-birnbaum-2010/

Best of luck going forward.

[Kitt]

Thank you Jasper, I appreciate the links you shared and your input.  I've spent a lot of time reading the article you posted by Dr. Birnbaum.

I've also done searches on the forum and found interesting insight about how SS is treating in MN and at JH's.  It's enlightening.

Thank you again for sharing!
K

[Jasper]

Kitt .....

I have not been to Mayo in Rochester, MN but I know a lot of people who have been there. No one that I know who has Sjogren's has anything good to say about the Rheumatological Dept. at Mayo. Many of them were dismissed as not having an Autoimmune Disease. They had to go elsewhere, often the U of MN, to get their Sjogren's diagnosis.

I currently have one friend with Sjogren's who does still go to Mayo in Rochester. She has a lot of complications from Sjogren's but, strangely, she is not being followed by any Rheumatologist for her Sjogren's and is on no actual treatment for her Sjogren's (ie  DMARDs, Biologics, etc.). She does not even see a Rheumatologist there and I find that strange and appalling. She is being treated for the numersous systemic complications she has from Sjogren's, but not by an actual Rheumatologist. She agrees their Rheumatology Dept. is not good but hesitates to change to the U of MN because all of her records are at Mayo (for the various complications she has from Sjogren's).

I have an excellent Rheumatologist at the U of MN (in Minneapolis), Dr. Parastoo Fazeli. She is superb, very knowledgeable and very competent. Also very caring and compassionate. So there are good Rheumatologists in MN. One just has to find them.

However, in your situation, with your autonomic neuropathy problems, I would still suggest going to Johns Hopkins and seeing Dr. Julius Birnbaum. You need someone who is extremely knowledgeable and competent in both Rheumatology and Neurology and Dr. Julius Birnbaum is the one doctor in the US who is very competent in both.

Here is another link with more on Autonomic Neuropathy:

http://www.robertfoxmd.com/SjogrensByFox/The_Neurological_Manifeststions_of_Sj%C3%B6gren%27s_syndrome-Diagnosis_and_Treatment.pdf

[SJSman]

Hello,

I went to Johns Hopkins for Sjogren's and Sjogren's-Neurologic Problems.  They are excellent.  I have heard nothing but bad things about the Mayo Clinic for auto-immune treatment for many years.  The Mayo Clinic is superb for many issues, just not auto-immune issues. 

You have gone to Mayo and gotten a positive Sjogren's diagnosis.  If you like your doctors and treatment, keep going there.  If you don't like your Mayo Clinic doctors and treatment, and for anyone else who is facing this Sjogren's and Secondary Neurological problems decision, I recommend Johns Hopkins or other options.

Other possibilities for diagnosis and treatment are the Cleveland Clinic and possibly the Penn Sjogren's Center with Dr. Vivino.

As an alternative approach , if you have a competent local Rheumatologist who you like and can see regularly without costly travel, then you only need a specialist for the Sjogren's-Neurological issues.  Chances are that your Rheumatologist knows a Neurologist who he works with, or would like to work with.   There is usually at least one well-known Neurologist who is a known authority on Sjogren's in each region of the country, and some regions have a lot more than one.

[Kitt]

Thank You Jasper, I've been reading the links you shared.  It's been helpful.

[anita]

I agree with Jasper...try to see Dr. Julius Birnbaum.  He has been my doctor for the last 8 years.  His research and expertise is focused on neurological manifestations of Sjogren's (and other rheumatological disease).  He is great and and the ONLY doctor with his qualifications (being BOTH a neuro and rhuemy) in the entire country.

It may take a little time to get an appt, but well worth it.

I have also been to Mayo in Mn and was NOT impressed.  They refused to Dx the Sjogren's (but Birnbaum  at JH found I was sero-negative with very positive lip biopsy confirming the Sjogren's).  Mayo Dx'd my dysautonomia but also completely missed other autoimmune disorders and I had 3 strokes after leaving Mayo.  Their testing facilities are great and of course they are very organized, but the doctor are horrible and arrogant.  They refuse to look outside the box. 

[Kitt]

Anita, thank you for posting.  Am going to PM you.

Sorry you had the experience that you did in MN.  I had a good experience with my neurologist there and she did dx SJS but have been reading what others are saying and am taking it very seriously.

[Carolina]

Welcome, Kitt.

Here we offer our support, our experience, and our hope.

We are truly fortunate to have this marvelous forum.

Hugs, and welcome again, Kitt.

Elaine

[Nymph]

Hi Kitt,

Welcome!

Thanks for sharing your experiences with Mayo here. It's fun hearing about all the cool tests they do there (more fun than it is is to go through them, I am sure!) I can believe that you're exhausted after all that! You've made incredible progress, though, just getting those diagnoses. Now you need a treatment plan that's really going to help! Good luck with that. Sometimes it does take time to experiment and find what helps you. I would look for an open-minded doc who is easy to contact and understands your treatment goals. Good luck!

Nicole