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Old 08-29-2009, 05:40 PM   #1
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phaedra1313 HB User
Mayo Clinic

Does anyone have any experience with the Mayo Clinic in Arizona?

My partner has been having severe symptoms for quite awhile and no one here has taken her seriously or found anything wrong with her. She's had CT scan, MRI w/ and w/o contrast, ANA testing, lyme test, EMG, EEG, etc. She has tested normal/negative for everything. She was finally diagnosed with Fibromyalgia by a Rheumatologist but her primary doctor isn't convinced that it isn't an auto-immune/neurological illness. She is weaning off of a high dose of Neurontin, taking Cymbalta 60 mg, Nortriptyline 25 mg. She was prescribed Vicodin, Percocet and Ultram but nothing does anything for her pain.

Her doctor in NM referred her out of state to the Mayo Clinic in Az. We have an appt in 2 wks. My biggest fear is that they will tell us that they can't find anything wrong with her, that she really does have fibromyalgia and that this is just as good as she will ever get.

Her symptoms are:
Severe pain (stabbing, shooting, electrical)
Numbness/Tingling
Headaches
Blurred vision and eye pain
Intermittent facial paralysis (She was seen by the ER for her headaches and they said she had Bell's Palsy)
Trouble swallowing (sometimes because her mouth droops or her throat feels like it is closing up)
Confusion
Forgetfullness
Slow word recall
Diminished sense of smell/taste
Weakness to the point of not being able to walk
Slurred speech (she says that her tongue feels too big for her mouth)
Dizziness/Vertigo
Feeling like there are bugs crawling under her skin
Extreme fatigue to the point of passing out
Numbness in extremities

If anyone has any ideas or anything related to your personal experiences, please let us know.

 
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Old 08-29-2009, 06:06 PM   #2
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MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Mayo Clinic

The Mayo Clinic, any of the locations, should be a good choice. Most teaching university hospitals should also offer good neurologists. From my sister's experience with the Mayo Clinic, they will not easily dismiss her without a thorough check.

I wish you luck and a safe journey.
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Eternally blessed and eternally optimistic!<><

Last edited by Administrator; 09-05-2009 at 01:10 PM. Reason: removed disallowed comment

 
Old 08-29-2009, 06:19 PM   #3
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Re: Mayo Clinic

Thank you so much!

 
Old 09-02-2009, 07:45 PM   #4
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Re: Mayo Clinic

Has there been a spinal tap done? And an MRI of the brain and cervical spine? These are the 2 big things that could point you in a direction for an answer. A lot of the symptoms you listed are possible symptoms and possible exacerbations of MS. If there is EVER any issues with vision you need to go to an eye specialist right away. I had optic neuritis and that's what got be on the track that led to my diagnosis. My father also has the disease and has lost all vision in his right eye. So it is very important to have eye issues checked on. REALLY HOPE THIS HELPS YOU GUYS!!!!

-Robin

 
Old 09-03-2009, 09:00 AM   #5
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Re: Mayo Clinic

She's had a CT scan (without contrast) and a MRI of the brain (with and without contrast) to rule out tumors, TIAs or MS. No one has taken it a step further to do a MRI of the spine or spinal tap. But I have heard of people who have had symptoms for years and finally someone does a MRI of the spine and finds lesions.
She has eye pain and blurred vision (had Lasik in 2006 so her vision was perfect before this) but it's not constant and doesn't get worse. But it's definitely something that we will talk to them about.
Thanks for writing back!

 
Old 09-03-2009, 09:17 AM   #6
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AntibioticMSer HB User
Re: Mayo Clinic

Hi phaedra1313,
I'm sorry to hear that your partner is having these symptoms. I'd see a neurologist with an MS specialty. Has lyme been eliminated for sure? If an LP is done, you should ask to have the CSF tested for chlamydia pneumoniae too. It's the bacteria that causes pneumonia, but it wrecks havoc when it gets in the CNS. Most doctors will not consider this unless you ask about it.

What was the onset of this like? Was it sudden, or looking back might there have been clues - possibly going back decades?
Ken

 
Old 09-04-2009, 12:16 AM   #7
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Re: Mayo Clinic

They tested for Lyme but I know it has a high false negative rate. She did live in Pa for quite a few years.
She's always had some form of chronic pain. But this whole thing started in March/April and has progressed since then. Most of the symptoms have occurred over the past 6 months or so.

 
Old 09-04-2009, 12:18 PM   #8
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Lightbulb Re: Mayo Clinic

I think that another MRI is probably a good idea. Also a new neuro. if they can't even help you guys. The situation with the eye that you describe is what is sticking out to me. One day I woke up and had a horrible headache, almost like a severe sinus pressure headache, a few days later I woke up and had a blurry spot in my eye. So I made an appointment with just a regular eye docter where they did a field of vision test, as well as looked at the inside of my eye, he sent me to see an opthamalogist, and he said I had something called retro bulbar neuritis, form of optic neuritis, in turn, he sent me for a MRI of the brain, and also to a neuro. opthamalogist, and a neurologist, which in turn sent me to get all the tests such as lyme and sed. rate, and then that same day to start IV infusion steroids to heal my eye (which worked AMAZINGLY) and the neuro did a full exam as well as a LP (spinal tap) and next time I went back, he said that 1. i had the optic neuritis, 2. I had lesions on my brain MRI (so he sent me for a cervical spine MRI) 3. I tested neg. for everything else, 4. I had a bad exam as far as a ll my reflexes and muscle strength goes 5. and I had oligoclonal bands in my spinal fluid. with all those things combined it was quite clear to him it was MS. This all happened within a months time and I was 22 and I just thought I was having eye problems. Now my father also has MS and was only diagnosed 2 years ago but one day he woke up and had NO vision in his right eye, he thought it was because of his lasik 6 years ago. now 2 years after his vision loss, he only got about 5% back and they hold him thats a s good as it will ever get. I am sorry this was so long but I wanted to describe my experience to you and how simple of a thing could be the sign that gets you guys the help you are looking for. If there is ANY form of blur or pain in the eye go to the eye doctor TODAY!!!!! I hope all goes well for you.

 
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