FTD, I posted under the FTD thread, but I wanted to be sure you see this.
How much testing have the doctors done to come up with the diagnosis of FTD? I'm beginning to wonder if it isn't really very wrong, and you need to get a referral to a qualified specialty hospital such as the Mayo Clinic RIGHT AWAY.
Your post piqued my interest because my mother -- who was diagnosed with AD -- had Sjögren's syndrome, among a host of other problems.
So I started poking around a bit.
Sjögren's syndrome is an autoimmune disease in which the body's immune system mistakenly attacks its own moisture producing glands. The hallmark symptoms are dry eyes and dry mouth. Sjögren's may also cause dryness of other organs, including blood vessels and the central nervous system -- for example, the brain.
About 50% of the time Sjögren's syndrome occurs in the presence of another connective tissue disease. Systemic Lupus is one of the four most common diagnoses that co-exist with Sjögren's syndrome.
Both Sjögren's and lupus can cause dementia. Individuals are often affected at a relatively young age. Progression can be very rapid.
And in some patients, the dementia caused by Sjögren's and/or lupus CAN BE TREATED -- sometimes almost totally reversed -- with high doses of corticosteroids.
You mentioned that your husband's thyroid is involved, as well. I also found a report on dementia associated with autoimmune thyroiditis which also responds to corticosteroid treatment.
But if left untreated, of course, a dementia caused by an autoimmune disease progresses.
I have found dozens of papers reporting successful treatment. Nevertheless, it appears that most doctors are unaware of the relationship between autoimmune diseases and dementia. Even papers written in 2008 point out that doctors are rarely aware that autoimmune diseases can cause dementia, and the dementia can sometimes be treated fairly easily.
I noticed that the Mayo Clinic, both in Rochester MN and in Phoenix AZ, seem to be knowledgeable in this area. I can go back to my literature search and look for appropriate points of contact, if that would help.
To be fair, Starling, autoimmune disorders can be more difficult to diagnose than disorders that cause dementias. And they require a lot of specialized biochemical tests that are not widely available.
Sunshyne, Oh my God!I have not been on for several days because I had my relatives here. I need as much information as possible . my husband's ANA level was very high and the neurologist's suspected lupus and told us to see a rheumatologist right away, so we went once we got there after examining my husband he mentioned srogen but wanted to perfom more test......my husband refused . What do I do! I need help with this .
Go to http://www.mayoclinic.org and click on appointments at the top of the page. It tells you about getting appointments. There is clinic listed in Florida, but I couldn't find where it is in Florida.
I went to the clinic in Minnesota several years ago for a dermatological problem. It was fairly easy to get an appointment. My current dermatologist called them, and they called me to schedule the appointment.
Sunshyne your are definitely sunshine today in my life! I have went to the website and entered information to schedule and appointment, it saysI should get a call within 48 hours. I also forgot to mention my husband c -reactive protein levels were extremely high also that is the need for fish oil (plaque around heart)
Sunshyne,] I keep forgetting all of the diagnosis here they are: FTD, marfan syndrome,COPD,chronic ptosism, chronic eye movment,pernious anemia,vitiligo,possible lupus/srogens,emphysema
OK I have made a call to the MAYO CLINIC and the rep was so helpful and patient on the phone with me. She said we should receive a call in the next couple of weeks regarding an appointment but we have to plan to be at the clinic for 5 days for 5 days of appointments. I can't wait to see what happens!
FTD, I've been having a nervous breakdown, wondering where you were... !
There are multiple Mayo clinics. The two that have researchers publishing in this area are the ones in Rochester MN and Phoenix AZ. Where did you get the appointment?
You may want to take along some information about the studies, in case the doctors you see are not familiar with this work. I'll pull together some of the stuff I've found. It may be fairly lengthy ... do you feel comfortable posting your email address? If not, Joan suggested that we get a special email through, what, Yahoo or something, just for this purpose. Let me know.
My dear mother died almost ten years ago. There was so little known back then about any of these disorders ... as far as I know, no one put her dementia together with her autoimmune disorders, and she was never put on corticosterioids. She was diagnosed with the Sjögren's and Boeck's sarcoid years before her dementia symptoms became obvious, poor thing.
Our appointment will be in Florida because it is closer to where we live.My next question was answered about your mother, sorry to hear she passed away. Do you know of anyone who did receive the corticosteroid treatment and what was the outcome? I forgot to mention previously also my husband had lost about 30 lbs real fast .He was also prescribe megestrol for just 3 weeks and his appetite seems to be back to normal. No weight gain but no weight loss since May. I will set up a email address and I would really appreciate any information you may have.
I don't personally know anyone who received the treatment ... but there have been dozens of papers published on patients who have been successfully treated. I'll be working on pulling together everything I can find for you. I'll see if I can get somebody from the other Mayo clinics to provide a point of contact for Florida, too. A couple of the publications from Rochester and Phoenix have email addresses for the corresponding authors. (Scientific publications often have multiple authors. One is designated as the "corresponding author", and his address/email are given, for people who want to communicate about the research reported in the paper.)
It will take me a while to pull stuff together, and I'm going to look for some additional references. I'll let you know as soon as I start sending stuff. Best of luck!!!!!!
We're off to Mayo next week for an appointment with a neurologist ( actually a resident). I can't go into details ... but Mayo is not the easiest place to get an appointment. We were on a 3-6 month waiting list (and my wife was already a patient there), but, after I explained the situation, they were very helpful and got her in much sooner. I wonder if Mayo isn't being deluged with dementia patients - it's only natural to want to go to the place with the best reputation (Mayo is consistently ranked #1 in Neurology by U.S. News and World Reports). But unless you've got something "interesting" (and it's never a good idea to be an "interesting" patient) what can any world-class medical center do for dementia - not much, but maybe a little something. But it is important to get a good diagnosis and Mayo's the best for that.
In FTD's case, her husband may indeed be "interesting", and it may actually be good that he is. I'll see what I can do to get the docs at the other Mayo sites interested in helping her, maybe that will also improve the odds of getting an appointment as soon as possible.
FTD, I've sent you an email. I think I've found THE doctor for your husband ... he's at the Mayo in Scottsdale AZ, though. Anyway, I sent him an email (which I just copied to you) and sent you his bio, and his address and phone number so you can harass him directly. <grin>
If we can get his help, you won't need my lists of papers. He wrote half of them, and is cited by the other half.
thank you Sunshyne. I just read the email it was wonderful. Yes my husband is definitely "interesting". Do you think I should get the diagnosis of sjogrens here first, if it is indeed sjogrens? I can't believe that it has been a month and to not treat the elevated ANA is scary.
FTD, I think I would focus on trying to get into Mayo Clinic, preferably the one in Scottsdale -- or maybe Dr Caselli will suggest consulting with your husband's current doctors. This whole area of autoimmune diseases is extremely complex, and you need experts involved.
But calm down about the elevated ANA. It may not mean anything at all. I found a good web site that talks about the ANA test:
If you manage to wade through all of it ... you'll see that the ANA is kind of helpful, and kind of not, in making a diagnosis. A positive ANA test result may suggest an autoimmune disease, but additional tests are needed before any kind of diagnosis can be made. In fact, this site says "most positive ANA results don't have significance."
ANA test results can be positive in people without any known autoimmune disease. The frequency of a false positive ANA result increases as people get older. Some drugs can cause a false positive; so can some infections.
If you look at the next page (Common questions) you'll see:
A positive ANA result means that you have a higher than “normal” concentration of these antibodies. This is one of the tools in diagnosing lupus as well as several other autoimmune diseases, so a positive result may be related to lupus or another disease (such as rheumatoid arthritis).
Or you may simply have a higher than normal concentration of these autoantibodies, and they may not have any impact on your health at all.
True, Starling, and he's on a med for that. Plus it seems that it's very common for a single individual to have multiple autoimmune disorders.
So unless the neuro has been running a bunch of other tests, for specific types of antibodies, I wonder what use the ANA results are.
Anyway, Dr Caselli is a top-notch expert in autoimmune diseases AND dementias, and he's suggested the names of two or three doctors (himself included) that FTD might like to request when she calls Mayo for an appointment. Caselli is in Arizona, and he gave another name there, and one in Jacksonville; he says there are a bunch up in Rochester, that's the biggest group.
I know FTD called Jacksonville, but given the hurricane season, I'm wondering if Scottsdale isn't a better option... he says she ought to be able to get an appointment in a couple of weeks (although he personally is tied up for two weeks, she'd have to wait a little longer to see him.)
I've got low thyroid disease. I'm sub-clinical. I test healthier than I actually am if you go by symptoms. I've been on medication, more medication than the test say I should be on, for more than 20 years.
My daughter had high thyroid disease. It turned out she was sub-clinical too. Because she had a fistful of reports to take to the doctor, it was obvious that she had been getting slightly sicker every time a new test was taken. It didn't matter that the tests had come out on the healthy side of the line. He dealt with it anyway because with that many tests getting steadily worse and with her symptoms it was obvious that there was more going on than the tests were showing.
I'm aware that it is possible to have multiple autoimmune diseases, but even though thyroid is the most common one, if someone is being medicated already and is still having really bad symptoms, it is like a red light to me. And if there is more than one autoimmune disease messing things up, it takes an expert to figure it all out.
I'm so glad FTD is getting her husband to a medical group that has some clue about all of this stuff. What if he doesn't have dementia? What if it is a wacked out imune system and it is treatable? This is one of those situations where you DO go and try to get all the tests done. I'm so glad Sunshyne had the contacts and the info to find the right place to go to get it looked at. This forum and this group is just amazing. We are so much stronger together than we are as individuals.
People, let me emphasize one thing: I did NOT have any contacts.
I found publications, learned who the experts were, and tracked them down. (The internet is a wonderful thing.) Sent my chosen target an email out of the blue. And the dear man responded immediately, over a holiday weekend, no less.
Morale of story: DON'T BE SHY ABOUT ASKING FOR HELP.
I've learned over and over again that some of the busiest and most important people can be the most willing to help out, if you just ask them.
(It is, of course, very important to tell them how much their help means to you, and thank them appropriately!)
Well today we actually received a call from the MAyo Clinic to set up an appointment and my husband now refuses to go. This is just terrible. How do I get him to go. He says all they are going to do is look at all the records and confirm what he already knows and just order more and more test and more and more medications.
I just wanted to let you know someone is here. I'm so sorry this happened. I wish I had suggestions on how to convince him to go, but I don't. I hope someone with better ideas than I answers soon.
I would go ahead and make the apointment and then think up some "story about maybe the dx we were gave before was not right and we need to go and maybe they will have something to give him to cure him" Don't know if it will work in your situation. My husband no longer complains about Dr. visits. Good Luck.
FTD, can you treat it like a vacation? Tell him you just need to get away for a few days? There will surely be times in between the different exams where you can get out and about and see things.
Or tell him that the appointment is for YOU ... that you're feeling quite sick and you're afraid there's something really wrong with you, and that you need him with you because you're worried and scared?
Or tell him that his current doctors have concluded that he is a very special case, and that he needs very special doctors ... that they've found the top expert in the world, and that expert has agreed to see your husband because he's so very special? Work on his ego a bit?