Anyone been to Mayo, MN?

[cathyst]

My MS specialist recently dx'ed me with autonomic small fiber neuropathy with large fiber and motor neuron involvement.  She said that I have to go to Mayo, MN for their Autonomic Dysfunction Center.  I live in S. Florida, so it is quite a distance.  Not to mention, the Mayo is out of network for my insurance.

I have been researching this disorder and it seems to me that there is no treatment.  My question is, what if anything could Mayo do for me?  I don't want to spend thousands of dollars and leave with no hope.  

Has anyone been to the Mayo Clinic and felt it was worthwhile.  I don't mind putting out the money if I get some kind of treatment that I otherwise wouldn't have gotten.

The dr. I am to see is Dr. Paulo Sandroni and is supposed to be brilliant.

Please help me make this difficult decision!

Thank you-
Cathy

[shannonkim]

Yes, I went to the Mayo in MN to get a diagnosis, and at the time did not know I had anything wrong with my Autonomic system. I would have to say that for a diagnosis and testing they are excellent. But for day to day treatment, I see a local neurologist who can confer with the Mayo doc as she sees fit. Then I will go to the Mayo and see them about 1x year if everything is going smoothly. It is a lot of money to travel, what about Vanderbilt in TN, wouldn't that be closer? They are excellent as well I hear. Good luck!!

[flowerfloosey]

I went to the Mayo Clinic in Az in Feb to rule out a dx of multiple sclerosis. Since it was in my network it did not cost me anything except the trip which ended up being about 1700.00 $. I live in California so it was only a couple states away but by the time you fly, (gas is so expensive now) and rent a car and stay in a hotel it adds up fast.
The testing bill was over 30,000$.It takes about a week to do all that you need to do when you are there and they suggest that time frame. It may be different with different diseases as far as the testing time involved. I was not that satisfied with the Mayo. The system they use is fabulous but the followup after you see the specialist is not that great.

If this doctor is wonderful it might be worth it but if you already have a diagnoses and you just need to treatment and followup, I would suggest finding someone nearer home within your network if you don't want to mortgage your home to pay for it. I was lucky with my insurance but I would think twice about it. I would also do a lot of searces until you can find someone who is willing to share their experience with seeing this particular doctor with you. that way you at least know if it was helpful to see an expert in your disease.

If I can be of any other help, please don't hesitate to ask. Good luck and God speed!

[flowerfloosey]

If you decide to go..I would call the Mayo and talk to them about what is usually involved as far as testing to see what you are up against $$ wise. They are most helpful when you call with questions but if you tell them it is out of network for you insurance wise, they shy away from taking you.

[cathyst]

Well, I rec'd a letter today from the Mayo Clinic.  They rejected me as a patient, stating that they cannot help me.  I know my sypmtoms are very advanced.  After researching this disorder, I was wondering if they could help at all.  I guess I got my answer.  

In the letter, they asked my MS specialist if she had any more information to share with them, and they would reconsider it.  There is a doctor at the Mayo/Jacksonville.   We could drive and stay with my brother-in-law, which would be a big help.  The doctor is on their list of neuros and he lists autonomic disorders as one of his interests.  So, it wouldn't be like going to an autonomic disfunction center.  

It just seems like there are no doctors around that really understand this disorder - it amazes me.

I just e-mailed my MS specialist to see what we do now.  Hopefully, I will hear from her soon with something to give me some hope.

Thank you all so much for your input.  I really appreciate it.   Also, I am grateful for this forum, it is a gift.

Cathy

[halbashes]

I'm so sorry for all that you're going through right now.  If I may ask, what kinds of autonomic symptoms are you dealing with?  It might be that you can tackle some of the most difficult autonomic symptoms with medication, just be sure you also have your MS symptoms under the best control possible.

By the way, MedHelp has Multiple Sclerosis community as well that you may want to look into for additional support.

[cathyst]

I have such a list of symptoms!  The specific symptoms that prompted my MS dr. to suspect autonomic issues are the following:

I cannot stand for more than approx. ten minutes.  At that time, I get a searing pain across my lower back, then my back muscles feel like a building imploding.  At the same time, it gets very difficult to breathe and I break out in a soaking, dripping sweat.  This happens EVERY time I stand too long.  Also, when I eat dinner, I usually have to leave the table early and get in bed, flat on my back.  

At this point, I can sit for maybe an hour - tops - under the best circumstances.  I break in to a soaking sweat with the least bit exertion or emotional stress - good or bad stress.  It takes nothing for me to be out of breath.

Once in a while, we will venture out to a restaurant.  When I feel up to it, it is like I am in labor.  We have to hurry, get to a restaurant where we will not have to wait for a table, eat and run.  In almost every case, I have to leave my husband at the table and get in the car, put the seat in recline and have the A/C blasting.  The last time we went, was the worst.  I felt like my heart was beating out of my chest and I couldn't breathe.  Now, I am really gun shy about going out to eat again.  

I have also had cardiac issues, with a very bad EKG, after having horrible chest pain.  Recently, I had a cardiac cath and it came out normal.  My cardiologist said that if it is due to the autonomic issue, he cannot help me.

I am pretty much bedbound, with two beautiful grandchildren that live ten minutes from me.  I am unable to watch them (3 mos. and 2 yrs) alone.  My husband brings my 2 yr old grandson to our house every Monday.  He loves when I sing Yankee Doodle Went To Town, but now I am totally out of breath if I sing to him.  It breaks my heart.  

I also have a lot of nerve pain, incredible fatigue/weakness, tremors, blurry vision when I am especially bad, bladder issues and digestion issues.  From time to time, I have swallowing issues too.

That is pretty much my story!

Cathy

[halbashes]

Are you taking anything to raise your blood pressure?  Drugs like Midodrine, Florinef, and Mestinon can be helpful in raising blood pressure, thus making positional symptoms more tolerable.  Compression stockings can also prevent sudden drops in blood pressure.  I'm not sure if any of these would be an option for you, or if they would interact with any of your current medication, or your MS, but it may be something to discuss with your doctor if low blood pressure is significantly disabling you.

Have you considered a cooling vest for your heat intolerance?  I just purchased one this week, and I'm really excited about it!  I payed for mine out of pocket, but based on my research I believe MS patients have actually been successful in getting their insurance to pay.  Also, you may want to consider keeping freeze pops around as well.  Perhaps even take a few with you in a cooler when you go out.

Also, I wonder if supplemental oxygen might be an option for the breathing issues you're describing.  I use supplemental oxygen on the as-needed bases, and have found it to be very helpful.  That too may be something to ask your doctor about considering.

We had a member last year using a drug called Lyrica for nerve pain.  I'm not sure if this is an option for you.  MedHelp also has a Pain Management community that may be able to offer you better insight on pain medication, and management.  I'd definitely recommend visiting the Multiple Sclerosis community as well.  They too may have some insight on symptoms, and treatment.

I noticed you lived in Florida, have you tried Shands hospital?

[cathyst]

Thank you for your lengthy response.  I have not checked in to Shands.  Do you know if they have a dept or dr. specializing in Autonomic Dysfunction?    If they have someone great, I would be thrilled to go.  No airfare - woo hoo!

I don't know what to do about my bp.  I am taking  bp medicine.  My aortic valve will need to be replaced and I have a developing aortic aneursym that will be taken care of at the same time.  We are trying to hold off on this as long as possible, thus it is important to keep my bp stable.  If if is high, it hastens the thickening of my aortic valve.  This is such a dilemma and I don't know if I should stop taking the BP meds or not.  My cardiologist, at the Cleveland Clinic in Weston, FL, said that he knows nothing about the autonomic issue.  I really need these questions answered.

Thank you again for your response and let me know if there is anyone reputable at Shands.

Cathy