Help with diagnosis

[coloradoman]

I am a 46 year old active male who has been healthy my entire life.I am trying to find a diagnosis of my symptoms which started May/2003 and continue today. It began with overwhelming fatiuge and lower back pain, genital/rectal pain,. I have had MRIs for lumbar/thor/brain and CT scan of my chest. Three months in, I had a LP with CSF protein at 54mG/dL. Sometimes I have dry mouth and metallic taste. During onset I used Nuerontine up to 1200 mg/day and 50mg amitryptalene in evening. My most current LP had normal readings for protein, cytology and ocligoclonal bands. I successfully weined myself off of the nuerontin to help me focus better. Recently I have noticed addition upper back/neck pain and headaches and flu like symptoms which seem to come and go. I have some bowel/bladder ugency occasionally. I have tried to get into Mayo(MN) but they have refused an appointment several times. All MRIs were done without contrast. I am concerned about a malignancy which could be spreading. I have had colonoscopy also. None of the MRIs have shown cause for spinal cord compression. My neurologist is passive at this stage. My PSA is normal as is Lyme test, CRP,and SED. Are there any more tests that I can push for ? I have read about Lambert-Eaton syndrome ? Some of my symptoms are similar. Are there antibody tests which can give clues ?  I am concerned that my MRI films are not being examined in a robust manner. My doctor refuses to do gadolinium enhanced. His reasoning is that he should be able to see lesions without contrast. Is this true ?

[CCF-Neuro-M.D.-CS]

From the symptoms you have described, I would not suspect Lambert-Eaton. The MRI can visualize tumors/masses without contrast. When a mass is seen contrast is used to see how vascular it is. I assume other tests such as an anti-nuclear antibody panel have been completed to exclude connective tissue diseases. Most other neurologic causes for your symptoms would have been excluded with your work-up. Good luck.

[ontherecord]

Why did the Mayo clinic refuse to arrange an appointment for you "several times?"  Are you saying that they wouldn't allow you do schedule an appointment with any of the neurologists at their center?

[coloradoman]

yes that is correct. I sent them a written request which was actually much greater detail than the message I posted here. My family doctor also faxed them records. Mayo responded in writing that they could not offer me an appointment. My neurologist also wrote a letter requesting an appointment and they responded the same. I have called and spoken with a representitive and she could not tell me why. She suggested I write another letter and ask why. I did last week, I have not recieved a reponse yet. She said another possibility was simply flying there and waiting for an opening, but she would not recommend it. She says people have been known to wait for two weeks without getting in and they end up leaving. Thanks for your concern.

[ontherecord]

Write a letter to the Department Chair of Neurology at the Mayo Clinic in Rochester, MN and tell him your situation.  Tell him that your neurologist strongly recommended that you make an appointment with one of their neurologists due to the complexity and urgency of the matter.  Tell the Department chair of neurology that you are not sure where else to turn, and that you are well aware of high level of comprehensive care that the Mayo clinic provides.  Put the names of both your general practitioner and your neurologist in the letter, and their contact information so that the Dept Chair of Neurology realizes the legitimacy of your complaint.  You tell him that if you cannot turn for help to an academic health institute of the highest caliber, you will be left without the proper avenues for your care.  Request an appointment as early as possible, and retierate the complexity of your sitation.  Then send it certified mail-return receipt or priority mail.  Also make sure to tell them you have been unable to schedule an appointment several times.  

Although no doctor is legally required to accept new patients, and many private practice doctors do not at times, I have never, ever heard of academic health center refusing to schedule an appointment with a patient in need.  If you still can't, write to the state board that oversees physicians and contact a medical malpractice lawyer just to give them a hard time.  This sort of conduct is both reprehensible and unconscionable and academic health centers should be available to every single patient who needs access.  Any less is unacceptable and a testament to the downfall of modern medicine in America today.  Best of luck my friend.

[bossanova]

I would guess that the reason Mayo is not offering you an appointment with one of their neuros is that the symptoms you describe and the test results you've had do not point unequivocally at a nuerological cause. The way Mayo works is to work you up for any and all specific symptoms before they refer you to the neurology department. Therefore, if they don't see any reason to refer you directly to neurology you can count on having to go through a long and costly work-up at Mayo in order to be eventually referred to neurology there, IF there are further hints in your work-up that your stuff is neurological. I talked to a Mayo neurologist (friend) about this a few months ago. He said they always refuse a direct referral to neurology when there is ''more narrowing down'' to do beforehand. I don't know if this is good or bad, but it's how the Mayo system works.

[ontherecord]

First, coloradoman's own NEUROLOGIST wrote a letter on behalf of him.  Doesn't that signify that the problem is neurological in nature?  Second, who does the "narrowing down" work-up at Mayo, or at least who determines that the cause isn't neurological? Some internist with little or no knowledge of neurology, or worse yet, some high school dropout clerk picking up phones at Mayo?

Third, are the Mayo clinic neuros so high and mighty that their time can't be wasted with people whose problems just may not be entirely neurological in nature? Give me a break.  Tell your Mayo clinic neurologist buddy to get of his high horse.  Does he think that his time is more precious than the time of non-Mayo neurologists? Sounds like an arrogant ***** if you ask me.

[coloradoman]

Thanks for the insight into Mayo, that could be valuable. I am looking into "anti-nuclear antibody " tests which the doctor suggested. I have not had any anti-body tests.

[funkser]

If you go to mayo, and they suspect neuro, a neuro will see you.  I went there without a referral 06/03.  I did see a general practitioner at the mayo who referred me to a neuorologist.  I saw the neuro the next day.  They are very thorough and will do their best to assist you.

[funkser]

If you go to mayo, and they suspect neuro, a neuro will see you.  I went there without a referral 06/03.  I did see a general practitioner at the mayo who referred me to a neuorologist.  I saw the neuro the next day.  They are very thorough and will do their best to assist you.

[funkser]

If you go to mayo, and they suspect neuro, a neuro will see you.  I went there without a referral 06/03.  I did see a general practitioner at the mayo who referred me to a neuorologist.  I saw the neuro the next day.  They are very thorough and will do their best to assist you.

[coloradoman]

So did you go there (Rochester MN) without an appointment ?
How long did you have to wait to get in ?
How long were you there ?
Can you share any more details regarding your symptoms and illness ?

I do appreciate your info, Thanks

[ontherecord]

Have you considered trying to make an appointment with one of the neurologists at the University of Colorado medical center?

[funkser]

i made an appt before arriving.  i saw a neuro the next day.  i was in rochester a total of five days.

[funkser]

i made an appt before arriving.  i saw a neuro the next day.  i was in rochester a total of five days.

[funkser]

i made an appt before arriving.  i saw a neuro the next day.  i was in rochester a total of five days.

[dreenyd]

A related discussion, Mayo Clinic was started.