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620877 tn?1282764097

My review of my recent trip to the Mayo Clinic in AZ

There are a few members who are scheduled to go to the Mayo Clinic in the near future & I thought that posting my recent experience there might help.  Please let me know if you have any questions, I would be happy to answer them, if I can.

The Mayo Clinic is an amazing place.  Every person that I came into contact with was helpful, empathetic and kind.  So kind, that on my first day I thought I was going to cry because I was so happy to be there and everyone was being so nice to me.  

The Neurologist that I saw there, Dr. G., was very nice & very thorough.  He told me to tell him about my symptoms.  I had my list, my timeline of symptoms and all of the tests results from the tests I had done with Neurologist #1.  I told him about my symptoms, he would interrupt to ask a question or clarify something I had said.  Then he did the neurological exam.  He told me after the exam he wanted to rule out a number of things, but the only thing he mentioned specifically was MS.  He also gave me a referral to the Gastroenterology department there, as I have a number of GI issues that have gone along with my other symptoms.  He wanted to make sure that those issues were being properly addressed as well.

When you schedule your appointment at the Mayo Clinic, they pre-schedule certain tests depending on your symptoms.  Once you have seen the neurologist, they decide which tests they need and then cancel any that are pre-scheduled, or schedule any additional tests that were not pre-scheduled.  In my case, I had an MRI of the Brain from July 2008 which after the neurologist looked at it, decided that he didn’t need to do another MRI of the Brain – so they canceled that appointment.

The neurologist scheduled (or had already pre-scheduled) the following tests:  MRI of T & C Spine, EMG, Blood work(they took more blood than I have ever given before), VEP, Ophthalmology, and Skin Biopsy for Small Nerve Fiber Neuropathy.

After having all of these tests, I was scheduled to meet with the neurologist to go over the results.  All of my tests were…wait for it…..NORMAL….with the exception of some blood tests showing a moderate Vitamin D deficiency and my B12 is on the low side of “normal”.  The neurologist then said that vitamin deficiencies can wreak havoc on our bodies and that I need to start taking Vitamin D immediately.  He also suggested a high quality multi vitamin, and said to have my blood work checked again in 1 month.  If my levels are not better, then we will increase as necessary & recheck etc.  So, no Lupus, no Sjogrens, no cancer, no Sarcoidosis, etc.

I asked him about MS – the only thing he said to me about MS was “There is no evidence of MS at this time”.  I don’t know what to make of that.  I also asked him what happens if the vitamin deficiencies aren’t what are causing my symptoms.  Then he said, “If your symptoms continue, worsen or new symptoms emerge, then I want you to see your doctor.”  He also said, “I believe that something is going on, but I don’t have any more tests to run that could help me figure this out”.

I am conflicted…on one hand I hope that all that is wrong with me is a vitamin deficiency.  As many on this forum have said – none of us WANT a diagnosis of MS.  But on the other hand, with the stories I’ve read about misdiagnosis – I am afraid of being in limboland because all of my tests were “normal” and the doctors don’t know what else to do….

I can’t blame the neurologist for not giving me something a bit more concrete…if there isn’t anything concrete for him to give.  I feel like he listened & ran the appropriate tests…but in the end, there wasn’t anything to find.

As for my GI consult, Dr. B was wonderful.  He confirmed my esophageal spasms, and after another EGD w/biopsy, TOOK AWAY my diagnosis of Barrett’s esophagus!  No person wants a precancerous condition, so that was good news!!  He also told me that the level of GI care I am receiving at home is excellent.  So although I didn’t go to the Mayo Clinic for the GI stuff, I was given a great opportunity for a second opinion, which I am extremely thankful for.
All in all, I was there for 12 days (there were 2 weekends in there).  If I hadn’t seen the GI department, I would have only been there for 9 days.

Personally, I would highly recommend the Mayo Clinic.  I have no regrets in going there and if I should continue to have health issues, would go back without any hesitation.  Not getting a diagnosis of MS does not change the fact that it is a fantastic facility.

Chrisy


14 Responses
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Avatar universal
I just went to Mayo-Jacksonville, FL. I was treated the same. Very kind, and almost unusual place- being that they treat you with the upmost care and respect- like a PERSON and less like a number. My neurologist was similar and very thorough. He ordered VEP, SEP tests and blood work. He took the most time with me than any specialist ever has. He was patient with my stuttering and sympathetic to my tremor problem. He reviewed my timeline and wrote the most detailed report of my visit which he summed up as a "very complicated problem". I have many muscle, nerve, and reflex issues that appear to baffle every doctor that I've seen. (both upper and lower neuron symptoms) I still don't have answers. We're waiting on test results and he also was very concerned about my tremor and problems walking so he referred me to be seen at a later date by a movement disorder neurologist there.

Just wanted to share my two cents about Jacksonville Mayo. BTW, their Neurology Department is ALS certified and top notch- I have never in my life seen a facility more accommodating for those with disabilities. It was impressive. (they had an electric hoyer lift built from the ceiling in the patient bathroom)
Helpful - 0
Avatar universal
Crisy,
I so happy to have found you! Your symptoms are almost mine identically! I have esophageal spasms also. I wondered if they have ever found anything out? I am told the same as you, take Vit D3 and B12. I don't have a thyroid so have to take Synthroid and Vit D and calcium. I have had multiple tests done that were normal except one and they keep repeating it. They point to a few things, but nothing definitive. I hope you get this and can answer if they ever found anything.

Yours in Good Health,
Lahahn
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Avatar universal
Chrissy,
  It's the Western Blot that I mentioned.,  It would say "Western Blot".  You can also look for the words "Lyme antibodies".   You should ask the PCP to run one, even if you had one done already that was negative.

  The "Gold Standard" for Lyme testing is considered the Igenex company. However, many conventional docs do not use them.  You would have to go to a Lyme doctor.  Igenex will give you a report and tell you what bands are positive.  Certain bands are indicative of Lyme and the report will tell you which ones.

Good Luck.  The Lyme road is not without its problems too.  You might want to contact wonko for help in that area.

Elaine
  
Helpful - 0
620877 tn?1282764097
Would testing for Lyme have been a part of a boat load of bloodwork?  They took so much blood - I have my results and can look to see if that test was done if you could tell me what the test for Lyme would be called.

I looked up Lyme disease, could I have been bitten & not know it?  I haven't ever seen the trademark "bulls-eye" rash that they talked about anywhere on my body.

Your wisdom is needed ObiWan....   :)

Chrisy
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147426 tn?1317265632
Reading your list of symptoms makes me want to urge you to explore the Lyme diagnosis.  Just a gut feeling.

Quix
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620877 tn?1282764097
Elaine,
Thank you for your advice on the vitamins.  I have already begun the vitamin D supplements & will see what my PCP says about the B12 shots/supplements.  I am thinking the same as you - get the vitamin deficiencies handled & then see how I feel.  That makes the most sense to me.  I will have to check the bloodwork to see about the TSH, Thyroid and Lyme.

As for the esophageal spasms and acid reflux - yes I take Prilosec twice a day for the acid reflux.  I tolerate (less side effects) the Prilosec better than some of the other PPI's.

The spasms are helped by a daily dose of diltiazem (diltiazem is a high blood pressure medication that works by relaxing the smooth muscles - they found in low doses it works for some with esophageal spasm).  I have had some luck with it.

One of the very interesting parts of my trip to Mayo was that the GI doc there told me that because of the Prilosec twice a day, I need to have my B12 checked yearly and my Bone density (calcium) checked every other year due to absorption issues.

This makes me wonder if because of the GI issues that I really do have a vitamin deficiency because of an absorption problem....

Chrisy
Helpful - 0
721523 tn?1331581802
I give myself the B12 shots.  They have really made a difference.  I have definate MS, but not too many symptoms.  The b12 has helped concentration and energy level.

As for the Mayo clinic, don't put all of your eggs in one basket.  I highly renowned cancer clinic told my mother that she had breast cancer that had spread to her liver.  After it was too late to do anything, another clinic found that it was primary liver cancer.  A transplant could have saved her.  I don't know who was correct, but I never trust ego's at "renowned" clinics!  Just my 2 cants worth!
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Avatar universal
Hi Chrissy,
  Thanks for sending me your symptoms.  I would think the low B12 and D3 would cause fatigue.  The B12 deficiency could also cause the memory and concentration problems.  The hip pain could be from the D3 deficiency.  But everythng else points to somethng going wrong.  

   I would go on at least 5,000 units a day of D3 for two weeks to try and boost the level.  That is conservative since I am on the forum and am not a practitioner.  I personally take 15,000 to 20,000 units a day to build up my level.  After the two weeks of 5,000 units a day, you could go to 2,000 units a day.  You could also take 5,000 units one day a week at that point.  You have a long way to go to get that level up.    

   For the B12 deficiency, see if your PCP will order weekly B12 shots for a few months and then drop to monthly B12 shots.  The shots helped me to feel more focused.  The form of B12 called methylcobalamin is readily absorbed from the body.  The other form of B12 called cyanacobalamin needs to be converted to methylcobalamin for it to be absorbed.  If your PCP doesn't have methylcobalamin, contact a compounding pharmacy in your area and have him order the shots, then go to his office with the shots in hand for a nurse to give you one.  

  Once you get the vitamin deficiencies corrected, see how you feel.  Then you can go from there and we will he here to help you.

  Quick question.....did you have a TSH done and a thyroid antibodies level done??   Also, have you had a Western Blot for Lyme?   Thyroid disease (the autoimmune type) can definitely give you some of the symptoms you mentioned as well as Lyme disease.  Most of your symptoms are sensory and Lyme can definitely do that.

  Good Luck and hope the D3 and B12 work.  You can buy D3 in softgel form in a grocery store.   Sublingual (under the tongue) forms of B12 are good but not nearly as effective as shots.  You can find them at a health food store.

  Another quick question.  Are you taking an anti-stomach acid drug for the esophageal spasms.  Craig has them and was told to take Prilosec.  Some drugs like Prilosec inhibit absorption of B12.  So in that case you really need the shots.

Take care,
Elaine
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620877 tn?1282764097
Hi Kristen,

I am happy to help in any way I can.  This is such a great group!  I hope that your trip to AZ is beneficial for you.  Please let us know how it goes.

Hugs,
Chrisy
Helpful - 0
620877 tn?1282764097
Hi Elaine,

I appreciate your "rant" as you call it (I would call it an opinion)!  :)  I have some of your same opinions on my visit to the Mayo clinic and my vitamin deficiency diagnosis...As I said in my post, I am afraid of being in limboland because of a lack of "abnormal" diagnostic testing to prove anything.  Am I "satisfied"?  To a degree...I had a great experience there - I didn't walk away with any firm diagnosis, but I don't know how I could have with normal diagnostic tests.    

My vitamin D is 18 and my B12 is at 212.  The neuro said that my exam was "pretty normal", I don't have Babisnki reflex.

Here is a list of my symptoms that have progressed over the last 18 months:

Faint, Lightheaded, Chest Pain – burning or squeezing (GI related),
Tingling – left arm, legs, scalp, back, left side of face/ear, feet, back, ribs, tongue, Numbness –Left  arm, Left side of face, left shin, top of left foot,
Prickly, hot poker feeling – face, arm, back,
Vertigo, Dizziness,
Urinary leakage, sudden stoppage, lack of sensation when bladder full and bladder spasm (?), one episode of urgency,
Hip Pain & stiffness – primarily left, but right occasionally,
Floaters in Left eye, sharp pain in both eyes,
Fatigue,
Headaches,
Constipation,
Deep pain in legs, Muscle twitches in legs, arms, Muscle cramps in calves, Burning/tingling in feet – heel and toes,
Balance – taking a step back,
Trouble with thought processes, Memory problems,
Hot & cold sensitivity,
Vibrating/buzzing/heaviness in back pelvic area, left inside arm & left leg,
Sharp, quick pains across back below ribcage or abdomen,
Hearing high pitch noise, not like ringing in ear and pulsing in ears at night or when rising from a seated position,
Slurred speech (?) – immediately after waking from sleep  – (my observation), Spelling problems,
Sharp  left breast pain.

These come & go.  Some last for days, weeks or months.  Others only last for a few hours.

I value everyone's opinion here, that is why I became a member of this group!  :)  I hope to help if I can, but also hope that your opinions can help me too!  :)

Chrisy








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Avatar universal
My husband is the one with Primary Progressive MS, diagnosed in August 2008.  In 2006, Mayo said it looked like he was developing a neurological disease (he could not lift his legs when lying flat and multiple other loss of leg function ) and to come back when he is worse.  Of course he never did.  We moved on.

My point is that you can have severe vitamin deficiencies, especially  of vitamin D3 and have no neurological deficits.  Low vitamin D3 is usually an indicator that your immune system is weakened and almost everyone with an autoimmune disease has a very low D3 level, unless you supplement.  ( I have autoimmune thyroid disease).  I would think the B12 level would have to be below 200 to have neuro effects.  But my body didn't act differently with my deficiency.  The neuro just chose to blame things on the deficiencies since it was easy.  It got him off the hook.

Elaine

Just my opinion.  As a nurse, I have lost much faith in the medical system.
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Avatar universal
I am so glad that you had a good experience at Mayo, but saddened to hear that definitive answers still elude you.  I appreciate you sharing so thoroughly, and answering questions that Cynde and I have had.

I leave on Sunday to head down to Phoenix for my Monday morning appt. at Mayo with Dr. Carter.  I have no excitement about doing this, other than knowing that I am going to a top rate facility for a second opinion on my MS dx.  I'm hoping that he also gives me the OK (as my Neuro here has) to have the Interstim put in.  I'm tired of the bladder dysfunction, and am hopeful that the Interstim is the answer as nothing else has worked.

Kristen
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Avatar universal
I am in the process of being tested for MS and would love to hear I only have a vitamin deficiency.  You mentioned that you had low vitamin D and B-12 and no neuro symptoms.  I havent gotten my labs back with my vitamins...should be back in a day or 2.  I do have neuro symptoms...I may have missed it, but have you been diagnosed with MS?  
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Avatar universal
Hi Chrissy,
  My husband went to the Mayo Clinic in Minnesota, and the patients we met there who had gone to both Minnesota and AZ Mayos, said they are very different and have different directors.

   I am not familiar with your symptoms and your neurological signs, but I don't understand any neuro who would mention MS as a possibility after doing your neuro exam, then turn around and blame everything on a vitamin deficiency.

  I personally have had a SEVERE vitamin D deficiency, with a level of only 7.  Do you know what your exact level was??  You need to have at least a level of 30.  I also, at the same time, had a SEVERE  vitamin B12 (less than 200) deficiency.   I had no abnormal neurological signs.  None.  I was fatigued, but not to the point where I was incapacitated.  

  Unfortunately, the doctors at all the Mayo Clinics are locked into not looking beyond the McDonald criteria.  He was basically left with not being able to move forward.  By the way, EMG's are normal in MS.  They are only abnormal in peripheral neuropathy.  MS is a central nervous system disease.    And remember, Mayo doesn't believe in early intervention in MS.

   Grannyhotwheels was also told by Mayo that she didn't have MS "at that time" though her records had notations that it was a possibility.  They didn't want to go beyond their criteria to try and help her.  

  I don't mean to be a wet blanket here.  Just shedding light on the fact that one can't always blame vitamin deficiencies on neurological conditions.    That is an "easy out" for a neuro.  I am glad that you are satisfied though and can move on.  This was just my two cent rant from a person who is paying the price having a spouse who was dismissed from Mayo Clinic.    Best wishes.

Elaine
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