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Mon, Jul 22 4:28pm · Xiidra (Lifitegrast ophthalmic solution) for dry eyes in Eye Conditions

Finally after years of dry eye, dry mouth, atrophy of pelvic area, etc. I have been diagnosed with Sjogren's. Now 3-4 more medications…waiting to see if my
dental work will get new medical coding from dental….can't afford having all dental work…all was obvious but tested negative on blood work for disease.
So diagnosed with Dystonia which I do have also, but this disease probably progressed onward because of medical not recognizing as an autoimmune disease. I do test positive for Scleraderma's Crest since 1995 with high ANA… all specialists saw roots in my mouth showing, teeth falling apart.
Need to make GOOD! out of my sad medical situation. Sjogren's Foundation in Reston, Virginia is very helpful and on the waiting list to be seen at the Baltimore Sjogren's Center at John Hopkins. We have to advocate for ourselves and others. Terrible disease with no CURE.

Have been a Dystonia Volunteer Advocate, brain donor at Mayo, patient of NIH for clinical trials of Dystonia, Biobank at Mayo. Now joined
Sjogren's and happen to live in DC. Taxation with no Representation! Just DC Representative Office that has no vote on DOD or NIH.

Need to make sure Rheumatologists know blood work may be negative but symptoms are there because 50% are negative that have disease.
Been in one if not the best medical system in the world, and now a dentist in DC said I have a systemic disease and had him get in touch with my Rheumatologist….finally at other location of Medical System…I was diagnosed…somehow need to update Medical School's training to include
Sjogren's….please do as much as you can…we do not want anyone else to go thru what we have.

Jun 3, 2018 · Osteoporosis in Bones, Joints & Muscles

Wondering about possible connections to my 5th Reclast infusion to my life? Lots started soon after the infusion that was given outside of Mayo.
Stupid on my part. I know the time I spent with the Reclast infusion was less, how much time is required for the infusion to go into blood stream?

How can I find out without to make sure I even got the Reclast and not something else? Do not trust or thought this guy knew much?
Sure I need to go to office for all written notes, reports, but s there a number on the infusion vial?

Have the DNA of osteopenia, blue eyes, short, Nordic, mother had but she broke her pelvis in her 90. I'm only 71.

What are problems with reversing it…who knows, and who knows ahead of the long term research on the Reclast, it has helped keep me in
osteopenia. So good for that, but my teeth are now falling apart, chipping every week, gums in recession big time, and doing all dental to prevent
the periodontal disease…? Help, parts of teeth are cracking off weekly…something chemical in my body, got to be?
Help? Just writing to you helps me….thanks for Connect.

Feb 4, 2018 · Living with Parkinson's Disease - Meet others & come say hi in Parkinson's Disease

Hi again! Correct spelling of the PD book is Dr. Eric Ahlskog. There are about 4 foundations, organizations listed on google for you.
Also, under news it tells how Mayo/Banner in Arizona is working together. Michael J. Fox, was suffers thru PD plus Dystonia, but Dystonia is not mentioned very much it is a fact. Break thru have been made in diagnosing PD early, clinical trial are going on.
Fox’s Foundation on google states it is the biggest funder for PD. Dystonia has even received grants from Michael J. Fox Foundation.

Berverlyann, it’s hard when you are a “caregiver” to have the time to look up all this help, is it possible to have someone else do research on movement disorders,,,there are so many different ones, but Banner teaming up with Mayo would be a great solution because they are working together on PD in Arizona and you may find out there is a local center close to you.

But, a PCP, is not one for a Movement Disorder diagnosis, PCP may guess at it, but since os the vast kinds, neurologists are best time spent. Lots of friends of mine who were exposed to Agent Orange Viet Nam when they were in the service, has PD and Veterans
Affairs have now it listed for possible outcomes. We also, are connected with Military Traumatic Brain Injuries and subsequent
Dystonia, so we are listed under the Department of Defense has a disease that gets to compete with other disease for amount of funding for research…we have no cure, either. Beverlyann, we have lots in common! Wishing you well and HOPE!

Feb 4, 2018 · Living with Parkinson's Disease - Meet others & come say hi in Parkinson's Disease

Beverlyann, just read over again your note. If it was me, I would call Mayo’s in Arizona, and ask to speak to someone who can give you the Mayo trained MDs in your area. Remember I am not a doctor but did have a father whose GI system, tremors were all part of PD.
That’s why we need more treatments that work. Because both PD and Dystonia are neurological movement disorders, it’s common the GI tract is involved. I have Dystonia in 5 different parts of my body, spasms that come and go. My mother had essential being tremor
and father with PD, two movement disorder cells from parents may have resulted in my Dystonia. However, we do not know?

People fly from all over the world to the Mayo Clinic locations, and if they can get help after being diagnosed locally, they do.

Also, if your mother and you do decide to go to Scottsdale, tell the appointment desk you are from out of town and you need
appointments close together. It’s always possible that the Neurologist will see her and diagnose her on the first appointment.
Many friends of mine, then do follow ups at local home MDs.

For 19 years we commuted to Mayo, because we were misdiagnosed by plenty of MDs, we finally moved to Jacksonville for the last 5 years of my husband’s life. We stayed at hotels, and long term hotels. My whole family did this. But, we have no regrets, we had the best care and support we could have ever gotten. But, one has to go and experience it for yourself. Mayo is not perfect, you may have to wait because of an emergency if you are seeing a surgeon, but that is not what you are going to do. Blood work will probably be done ahead of appointment or after and at JAX, it takes about 3-4 hours to have it complete and back to MD.
But, after one knows their system, blood work results may be posted on the patient’s personal electronic portal in 2 hours before the MD even has seen it. Then what I do is call the nurse, and have the MD call me. I will tell them that the results are already posted.
They are busy seeing other patients so they get the message from the lab, but I just might get it first. One would not have any of this
experience, you must remember, I am a third generation patient with 6 people currently seeing Mayo, Jax. If I did not know my Mayo Clinic patient number by heart after 23 years, guess I would feel maybe I had Cognitive Impairment. Sometimes, I forget my social security number. Ha, Ha, Ha! I have an original Rochester Mayo Clinic card that I will always keep. We don’t have them now.
It’s kind of “vintage” and I love it! Good results wherever your dear mother goes, and it sounds as though you are the “Caregiver”
in the family, and that means you need to be educated as best as you can…I will get off and get the correct spelling of the PD Mayo
book now. Thanks for reading all of this…I could write a book on being a Mayo Clinic patient, I have wonderful experiences of all of the kind, compassionate people I have met for my entire family and Uncle’s and Aunt’s that use Rochester from Fargo, N.D.

You have all my support and faith in you for the best outcome for your mother and family.

Feb 4, 2018 · Living with Parkinson's Disease - Meet others & come say hi in Parkinson's Disease

I have been a Mayo Jacksonville patient for 24 years. Jacksonville is “not in Contract” with Medicare anymore. For years they were but because they are a diagnostic specialized medicine center, they are Federally permitted to charge a very small percentage to patients personally that we are responsible for ourselves.

I am on Medicare A/B plus plan F of supplement. The percentage I personally am responsible for legally is very small. There is no way I would ever let that small amount of money get in the way of using the Mayo Clinic. Depending on your disease and department, Mayo may just be the best in the world. Health is the best investment there is I feel.

Parkinson’s Disease is one of Mayo’s diseases they are dedicated and recognized for their contribution to the world. I see that department of Movement Disorders in Jacksonville because I have Dystonia. Many PD patients have PD plus Dystonia. Rochester’s campus is also recognized as a PD Center. As far as I am concerned the best book on PD for patients was written by Dr. Askog…sorry may have a couple of letters wrong in his name.

Jacksonville’s campus has specialized neurologists, researchers, as well as monthly support groups on campus. We also have had PD Symposiums often held on campus. Of course, we also have a Movement Disorders Brain Bank, and lots of clinical trials going on there. Mayo also collaborates with all the medical centers all over the world.
In the last years, with all three locations counted, our NIH has funded Mayo Clinic more than any other Medical Center. Not up to date on current numbers of 2017 but I believe it remains the same. My understanding of that fact has to do with our researchers are applying for funding and granted the funding because of their expertise and results.

Five months ago I moved to Washington, D.C. and I continue to be a Mayo Clinic Patient and plan to remain that way for the rest of my life. I have established a Primary Care Physician in D.C. who is with the John Hopkins System and I like the internist and we have discussed her applying to Mayo Clinic, Jacksonville because her sister who is also a MD in NYC wants to move to a warmer climate also. So they both will apply for different departments and I hope they are accepted so they may live in the same city and work at Mayo.

Think I have written this before on Connect, I am a third generation Mayo Clinic patient in my family. There are many exceptional medical centers all over the world, and many Mayo trained MD’s working all over the world, the only reason I ended up using the John Hopkins System here is because of it’s location, two blocks from my apartment. But, if I wanted to travel to the suburbs of DC, there were many Mayo trained MD’s available. Two blocks and easy access to get appointments made a difference to me. Plus, it is John Hopkins! Mayo and John Hopkins are tops in the world!

Plus, they all know each other. Belong to the same professional organizations, go to the same cutting edge research summits.
I in fact have been able to go to NIH Summits as a patient. It’s all available to us if we do our research on the disease.
The National Institutes of Health as USA citizens we are paying for in our taxes. We are so fortunate and I am so grateful to
have what is called a rare disease, or “orphan” disease that was diagnosed by the Mayo Clinic early on.

Please don’t give up, there is help, if one does not want or cannot use Mayo, please go to their support groups for Movement Disorders that are free to the public.

Our specialists give very informative education we need to be the best we can be there… I am on the mailing list of Jacksonville’s PD Support Group so every month I see who and what is planned for the meeting. Also, included we are sent information necessary to be included in Clinical Trials, and other exercise programs and support groups in the area.

I actually have a friend from college who’s wife came down with early onset PD in her 40’s in Tucson, Arizona.
Even though I suggested they see Mayo in Scottsdale to see if they had any other ideas for her health care, they stayed with their system in Tucson.

Whatever, going to get second opinions from other medical systems one always learns something. Going to the John Hopkins
PCP, I have learned a different view point on another issue I have. One learns from all, and the more engaged one is the healthier
I see people get.

Every year when we as a group from all over the USA, Advocate to our Congressional leaders, I see advocates that I have known for years that are getting better and better. Also, I learn so much from them. Please don’t give up, there is HELP!

Become an Advocate for PD…you will find out all the best MDs others are using, medicines, and other treatment programs.
We need as many advocates as possible to call on the decisions makers in DC and their local offices to have research done on a disease we do not have a cure for…My father had PD and my brother has Frontal Temporal Dementia that basically amounts to
Parkinson’s plus no mental judgment…it’s now considered to be the worst type of dementia there is. He has had it since he was about 65 but not diagnosed until 3 years ago…result is his health care surrogate is not involved with the disease, his judgement is not there
so we are more or less unable to get him the best care. When he says no, it’s NO. I am helpless to help him because his judgement ws already off, when he legally made his estranged wife the decision maker…please get the best help for your beloved you can and make sure one is chosen as a health care surrogate that will do a good job…yes, it is so much time and energy, overwhelming, but one will be overwhelmed if nothing is done. You can do it! You would not be on Connect if you were not totally dedicated.

The only reason, I am not on Connect now, is that I have an eye problem that is made worse by all technology. Computers, cell phones when I text, etc. I have to put my eyesight first. There’s HOPE! Plus, you do not want to regret not doing it while one is able.

Blessings to Arizona from DC!

Jan 21, 2018 · Loss and Grief: How are you doing? in Loss & Grief

Sorry to report that I will not be able to continue sharing with your Mayo Connect. My blepharospasm and dry eye does not like me to be on the computer or do any texting. Doing all my specialist at Mayo directs me, but my dystonia plus dry eye is preventing me to continue at this point. Wishing you all well!
Agent Darien

Jan 16, 2018 · Anxiety: bouts of nervousness, dry flushing and nausea in Depression & Anxiety

Why don’t you call Mayo, tell them and see if they feel they need to move up your schedule. Good that you already have had a good workup already.
By experience, at this age, I go GIRL! Getting to the problem quickly, solves the problems. Not waiting and worrying. Call them and let them decide?
We never want to bother the scheduler, but your quality of life is at stake, not the scheduler’s life. Same age female and a third generation Mayo patient for 23 years. I believe in Mayo and their system but we are responsible to be our own ADVOCATES, otherwise, how can they be so GOOD?