Mayo

[navydad]

My doctor called, neuro,, said I had been aproved to go to Mayo, now this may sound like a good deal, but allready things are unraveling,, I was given a reference number to call mayo with,, called them up,, and they hadno idea what I was talking about,, I was told by doc it was ok;ed for a 1 time visit, I asked the people at mayo,, aand asked about the one time visit,, they told me it might be a one hour consult,WHAT,, ya like I am going to drag my half dead limbs to mayo tobe told nothing I dont allready know,, I talked to my other neuro,, I see her tomorrow,,and she said they mighthave to do a muscle biopsy,, why didnt you do that a year ago,, sigh,,
  the arms are getting really bad,, along with the stomach issues,, I am sure its all autonomic,,, but cant get these idiotos to acknologize it,, My brother in law was killed in a car accident on friday,, and I am so miserable from this neuropathy,, I cant make it to the service,, I have ahouse full of out of state people,,,
  What would make my mouth burn everytime I eat something, I am using nystantin for teh thrush,, I;m just sofrustrated with all this,, and a hosue full of family that will not educate themselves about this

[Epson]

Health problems are one thing, but throw a bunch of out of town relatives in the mix when you don't feel good, I pity you brother.

[trector1955]

I am really sorry about your brother in law. I know what you mean about having people over who don't understand. I feel guilty just laying down and having my family saying i sleep too much. its hard when they don't understand. it just makes stress. try not to stress. easier said than done. I would go hide somewhere. take a long shower I have a shower that has little bench's on the sides I just sit and hide. or lock my door.Good luck with everything again I am sorry
Theresa

[Joe S.]

I do not envy your current situation. Forget what your relatives say or think. Just take care of yourself.

[louise]

So sorry to hear about your loss and that you are having the burning in your mouth when you eat. Not sure why that would be . I have very dry mouth and sometimes sores. That is bad enough, but burning I sure feel for you. I definitely understand the family issue. I don't get the lack of concern and wanting too educate yourself about a rare disorder a love one has either. Pretty much my family is clueless about my illness. Most of them when I do bring up something about sjogrens are not even interested. For their sake I hope it isn't in the genes. Although I know it is. My mom had thyroid and diabetes and I right away wanted too know all I could too help her. Also so I hopefully would avoid it if possible. You need to think about you though because doesn't sound like they are. If they are making you stress out don't feel bad about asking them to leave. Good luck.

[anita]

Navydad,

When i went to the Mayo in 1998 but I had to stay for 10 days.  When they did an "evaluation" they did everything they felt necessary.  They would schedule from 2-5 appointments a day (tests, labs, consults, etc).  At the end, the patient would meet with the original "attending" physician for the final conclusion.  Very organized system.  however, to tell you the truth, I found Johns Hopkins to be better.  If you have neuro complications of Sjogren's, you should explore the options there.  They have an actual Sjogren's Center at their Bayview Hospital (part of the Hopkins system).

There are several autonomic tests that can be done to confirm diagnosis of autonomc dusfunction:  Tilt table, gastric empty test, sweat test, BP monitoring, holter test, etc.  These are things your local doc should be able to order so you can take result to Mayo (or other).  The muscle biopsy is quite invasive.  I had one many years back.  They remove several inches (I think it was about 3-4) of the sural nerve on the back side of your calf.  You will most likely not have feeling in this area...again.  Phantom pains, etc are difficult for a while.

Try to get other (non-invasive) tests done first, and maybe you'll get a better diagnosis and help with the autonomic issues without the biopsy.  Sound like your suffering already, so no need to ad to it, with a traumatic test liek the biopsy.

Good luck and sorry to hear about the brother-in-law. 

[Rostradamus]

Tell your uninformed guests that Sjogren' is like Lupus's big nasty brother. All the same bad habits and then some. That just outdoor lighting and flourecent lights as well as stress can flare the illness. It's harder to treat than cancer and once you have it, it is for life. It can attack ANY organ or system, like vascular or your brain, liver,lungs, eyes, are just a few of it's favorites.  It is often misdiagnosed as over a dozen other chronic diseases because it can do the same damage and is a very complex disease you would wish on no one.  You could download the general overlay and list of symptoms and comlpication from www.MayoClinic.com or www.SjogernSyndrome.org  and say,"If you really want to know."      It is worse than sad this terrible illness is never heard about, and eveybody is all sympathy and donations about breast cancer(yes it is tragic too) Yet if you have Sjogren's  you are a faker who couldn't possibly have all those sympyoms and problems.           As to your mouth problems; look up my posts on tongue and mouth problems or some of my other posts. you'll find practical suggestions. It's too much to keep repeating myself. My spine is collapsing, painful to even do this post. Yes mine is severe, attacking many organs. And unlike some say Sjogrens can kill you: ask my lungs, liver or sleen(When it rupters you rarely make it to the hospital)     Sorry that you too are surrounded with ignorance. I understand. God Bless You.    Rostradamus.      PS yes everybody, I now I'm a smart-bum... with an IQ of 181.  Ignorance really fustrates me.

[meow]

OK, what is a "holler test"? Do they poke you until you holler?

[anita]

Hi Meow,

The holter test is a 24 hours heart monitor to record heart rate and rhythm.  Autonomic dysfunction can cause a low heart rate or inappropriate high rates.  Simple non-invasive test that can help diagnose autonomic neuropathy and its effect on the heart.

[dbaratta]

Navydad:  You don't say where you live but I have also been seen at Johns Hopkins and it was very thorough (and compassionate).  Course, they're in Baltimore (only 3 hrs. ea. way for me -- I'm on the shore in NJ) but they are really good and worth the trip.  Good luck.  Diane

[susanep]

Rostradamus I love your post. And you are correct, in spite of what they say, sjogren's can kill us. I think if the doctors would admit that we would get better care, and more quickly.

susanep

[irish]

navydad, I live in Minnesota and so am very much aware of the Mayo clinic. I have been there many times. I was told I did not have sjogrens or myasthenia gravis, that I did not need my teeth pulled and that I needed to be seen for a psychiatric consult. This was in spite of all the symptoms that I had and my husband having words with them. I told them it was not psychiatric and that it was autoimmune. My reasoning was if they could not find anything else they should check me for the AI diseases.

Anyway, since you have AI diseases documented it seems like you could be seen closer to home. I would think that John Hopkins would be able to treat you. I know if you come to Mayo they do not trust any other medical centers ct scans or x-rays and want to do everything over plus you end up staying for many days and at great expense. Once you get in the system it can be just exhausting doing all the appt even when you are well.

Don't get me wrong, Mayo's have some good doctors, but I think that there are many other doctors that are just as good. One of my doctors told me that in the US all the doctors go to pretty much the same schools,etc and have a lot of the same basic training. There are good doctors that don't want to go to Mayo or any other big medical center. Our problem is finding that right doctor who can help us no matter what state we are in.

I am sorry for you loss. Life gets pretty heavy at times and accidents are so hard no matter what the persons age. I hope you can manage to survive all the company. Don't even try to explain your illness. So many times people don't understand plus they don't want to face the prospect of getting ill thenselves. Who can blame them. None of us wanted to get sick. The only difference between them and us is we got sick sooner. They will all have something "later" as no one gets out of this life unscathed. Irish

[meow]

Navydad:  You don't say where you live but I have also been seen at Johns Hopkins and it was very thorough (and compassionate).  Course, they're in Baltimore (only 3 hrs. ea. way for me -- I'm on the shore in NJ) but they are really good and worth the trip.  Good luck.  Diane

Where are you  in NJ??? I spent every summer on Long Beach Islland, as my mother did before me... I lived in Wildwood for a year when my husband was in the USCG in Cape May. That was another lifetime!

[navydad]

Navydad:  You don't say where you live but I have also been seen at Johns Hopkins and it was very thorough (and compassionate).  Course, they're in Baltimore (only 3 hrs. ea. way for me -- I'm on the shore in NJ) but they are really good and worth the trip.  Good luck.  Diane

Where are you  in NJ??? I spent every summer on Long Beach Islland, as my mother did before me... I lived in Wildwood for a year when my husband was in the USCG in Cape May. That was another lifetime!

I live aobut 30 miles south of Pittsburgh,, the reason for MAyo is that my Neuro knows someone out there in the neuro dept, now today I find out that they wont see me until I have all my records sent there,, wishit were JH or somewhere closer,, I;m just fed up with all of it,, and I also spent alot of time in Wildwood,, yes another lifetime so long ago,, that I almost forget what it waslike

[dbaratta]

Gosh!  That's great!  We still go to Wildwood every year.  Tough to do the beach though!  Need umbrellas and lots of cooling off periods in the water.  Sometimes on the boardwalk it is so hot, I can't breathe and we have to leave.  We are in Mays Landing (just 13 miles from Atlantic City) -- not a long drive to Wildwood.  Good to see you guys here.  Hope you can get help.  I've got one of the BEST Rheums (Dr. Vivino at Univ. of PA) and some other good ones, including Dr. Birnbaum (Rheum/Neuro) at Johns Hopkins.  Keep us posted.  Diane