Had to Walk Out on Mayo Clinic - Rochester and Need Advice

[mresene]

Hello, everyone. I recently had a very negative experience with MAYO clinic regarding my ongoing MS-like symptoms, and I'm hoping people on the board can give me advice. Background: I'm a 36 year old female Ph.D. student in English Literature and Disability Studies. In 2014 I began experiencing odd symptoms: began with balance issues and falls, later numbness and tingling in right hand, arm, foot, or leg intermittently, muscle spasms, jaw pain, swelling of knee, some tinnitus off and on, brain and speech slowing, a slur when I'm tired, chronic fatigue and join pain, optic neuritis diagnosed by eye doctor in May, and this summer a stutter that comes on suddenly and lasts a few minutes to an hour, bladder and bowel incontinence, and a tremor in the hand - most symptoms are in the right side/infrequently they effect the left but never both at once.

I've had blood work - ANA consistently the highest the clinic can test for but no Lupus, Lyme, Sjogren's, RA, B-12 is good, D is slightly low but I'm on a supplement, blood sugar is slightly high (around 105 fasting) but I have PCOS and take metformin which has helped quite a bit with that. I've had normal MRIs of brain and spine w/ and w/o contrast in 2014 and this past month. Had a spinal tap in 2014 with 1 O-band present. I do have fibromyalgia and hypothyroidism; however, I'm not sure either of these explains the recent symptoms such as the neuritis. In addition, I'm worried because I have gotten a LOT worse in the last 5 months.

Right now, my eye doctor, my dentist, my (now retired) general doctor and my new one, and my gynecologist are all convinced that I have MS. I'm not so sure, but I do know that something not good is going on. After the normal MRIs in October, my doctor referred me to MAYO Clinic in Rochester, MN. They called back in less than a week and wanted me there in two weeks for a 5-7 day evaluation. So, I was excited thinking - finally, answers! My best friend went with me because I no longer drive long distances due to muscle spasms, numbness, and vision loss. At 7:30 a.m. the first day, we reported to my main doctor - a neurologist.

My friend came with me when I met him to help me take notes and remember instructions (I frequently forget things - not good for a graduate student). I gave him my medical history and symptoms (per my doctor), he wrote it all down, asked questions, and seemed...a little disengaged. He had me walk - I tend to shuffle and my right leg drags a bit, so he yelled at me to walk faster, which I couldn't. He then did a series of tests like a police stop for drunk driving. If it had been a police stop, I would have had to have used the breathalyzer because I failed it - I actually fell over and he had to catch me once. He then did an eye exam - this is where it gets scary. I couldn't see some of the numbers in the color-blindness test out of my right eye. When I switched to the left, I nailed it. Then, I did the eye chart. Using just the right eye, I couldn't read the third line! I could get to line 9 with the left. I just got new glasses in May (when the doctor diagnosed the neuritis) and at the time I had 20/20 vision with the glasses, some issue seeing color out of the right eye - which has now worsened.

During the table exam, when the neuro asked me to look where his finger was (which I did), he kept yelling - look! look here! to which I responded, I am! It turns out my right eye isn't tracking right. It doesn't move as much as the left one so it's hard to tell what it's looking at. When he checked my reflexes, my right side barely responded. When he hit my left I about jumped off the table. Let me be clear, even if I wanted to I couldn't fake those reflexes. I'm usually very sensitive to that little hammer. In fact, I just had a neuro exam 5 months ago due to a car accident and at that time my reflexes were fine on both sides. I tried to tell him this, but he didn't listen.

He asked me to close my eyes while he checked me with a tuning fork. I was supposed to tell him when I felt the buzz. My friend told me later that there were several times he struck it and I told him "no buzz" meaning I didn't feel it. He never mentioned this to me. Next, he stuck me with pins. Later my friend told me that he was stabbing me like I was a voodoo doll of an enemy with those pins and it took five or six sticks (progressively harder) before I felt it. I had blood smears after the fact (no wonder!). When I could finally tell him I felt something, he just went on sticking me six or seven more times in each spot. I think he was trying to make me cry, but I could barely feel it in my right hand and foot even then - left was more sensitive.

He then proceeded to do an exam of tender points for fibromyalgia (I do not know why since I told him I do have fibro when we first talked - it's not really up for debate at this point. Not only that, but it's usually a rheumatologist who diagnoses it as in my case). Not only did he do his own exam, but he was very rough. My right knee is incredibly swollen despite no findings on x-ray. It frequently snaps, crackles and pops like Rice Krispies. And it is painful to the touch. When he did the exam he grabbed hold of it with no warning and really wrung it. I yelped like my cat when someone steps on his tail, and he actually smiled. At this point, I was ready to call him a sadistic SOB and walk out, but I needed his help.

At the end of all this, this is what he told me: You do NOT have MS - I repeat - you do not, so let it go. During the initial consult, he kept asking me about MS - did anyone in my family have it, had I ever been treated for it? No and no. I never actually brought it up - to be honest, I'm more worried about Parkinson's or lymphoma (both of which run in my family), which he dismissed off hand saying I'm "too young" on the Parkinson's and it's "highly unlikely" on cancer. Very reassuring with no tests to date. He then said there was nothing neurologically significant in my exam and no neurologist would be able to help me. He did not mention the odd reflexes or lack of sensitivity. He then cancelled all the tests that Mayo had scheduled - new MRIs because my last one was open due to claustrophobia and they're apparently less sensitive, a spinal tap, etc. because he didn't want to "put me through that". He did schedule several eye appointments - but not until the end of December. And he told me that sometimes the brain "unlearns" how to walk and talk properly (I walk with a cane because my knee is the size of a grapefruit and gives out on a regular basis). In the end, he wanted me to go to a speech pathologist and a physical therapist who could show me that there was nothing physically wrong with me and "retrain" me how to walk and talk.

I felt hurt, angry, and condescended to since he basically told me it is all in my head despite the clinical signs in his own exam, the fact that I'm going rapidly blind in my right eye, and my seriously diminished reflexes. Long story short, I walked out. I initially asked if I could turn down the other tests and come back for the eye tests and they told me if I refuse treatment on any of it they can no longer help me. So, I told them thanks but no thanks, I'll find my own ophthalmologist. So, now I don't know what I'm going to do. It's my word against the world-renowned MAYO clinic when I go back to my doctor. At this point, I'm going to get my eyes checked since it doesn't require a referral (eye doctor wants an evoked potentials test) and -- I guess - wait and see on the other symptoms in case they get worse (which is likely) or show up on an MRI down the road?

I apologize this is so long, but I wanted to give the background. Here's the upshot: Has anyone ever had this experience? Can you recommend a decent Midwestern clinic/doctor? I'm at a loss. I'm scared I'm going blind in one eye, I'm struggling to drive, to teach, to research -- all things I love -- and I just need some advice and support right now. Thank you in advance.

[Scott1]

Hi,

Welcome to the world of standard diagnosis. I think you have provided a very truthful account of what has been going on. Pity your examination didn't provide some certainty.
Lets forget about MS as it's just a term and look at what's going on. The metformin helps so obviously stay with it.

Your eyes are a problem. That is a real issue. Your reflexes are real outcomes. I'll presume the fibromylagia diagnosis was well founded so that's real. You have inflammation in your knee, again a real thing. You know your bowel and bladder problems which I am sure you know are real but he doesn't want to know. Well done for telling him.
When he concludes you have nothing physically wrong with you he is just telling you that he is out of his depth. Obviously your decision to walk away is well thought out.

The other thing that is real are the MRI results. Despite his other examinations and your description I imagine that is all he relied on to draw a conclusion. Beyond that he sounds like a standard useless bureaucrat.

To deal with the fibromylagia you have to look outside the box. If you want, try a book called "The Sinatra Solution: Metabolic Cardiology" by Stephen Sinatra. He is a well known cardiologist. The book is written with congestive heart failure in mind but the explanation of how the cell works is generally applicable and well written. He has based a large part of it on a more complex book called "ATP and the heart" by Prof.Joanne Ingwall who was in charge of the laboratory at Bingham and Womens hospital in Boston at the time. Cardiac and skeletal muscles are very similar and I think these books are relevant in your case.

Sinatra treats fibromyalgia with 300-360mg of coQ10 plus 2000-3000mg of L-carnitine and 400-800mg of magnesium plus other supplements. What he and Ingwall are focusing on is how the basic currency of energy is spent and what happens when it can't be recycled. When the cycle breaks down ATP breaks down into purines. If your blood doesn't carry enough oxygen to the tissues the purines are washed from the cell and the tissues become damaged. A way of measuring how far that process has gone would be to look at your uric acid level (a blood test, not a urea test) as that is the final stage of purine metabolism.

The issue, which would be contentious in your case, is why it is happening .

Infection by mycoplasma, chlamydia, rickettsia can all trigger these sorts of metabolic issues. They can also affect vitamin and amino acid levels by scavenging. There are many other reasons.

I am not in the US but I would start hunting from Sinatra's links for someone who is on his wavelength.

Regards,

[NHE]

I've had blood work - ANA consistently the highest the clinic can test for but no Lupus, Lyme, Sjogren's, RA, B-12 is good, D is slightly low but I'm on a supplement, blood sugar is slightly high (around 105 fasting) but I have PCOS and take metformin which has helped quite a bit with that.

Welcome to ThisIsMS Mresene,
You have several symptoms which are consistent with a severe vitamin B12 deficiency, in particular loss of the vibratory sense which represents demyelination in the spinal cord's posterior columns known as subacute combined degeneration.



It would be good to know what your actual B12 results were. Did you also get homocysteine, red blood cell folate and methylmalonic acid tested as well?

[lyndacarol]

I've had blood work - ANA consistently the highest the clinic can test for but no Lupus, Lyme, Sjogren's, RA, B-12 is good, D is slightly low but I'm on a supplement...

Would you share your actual vitamin D test result?

In January of this year, my vitamin D3 test result was 24 ng/mL, which was frankly deficient. The California-based organization GrassrootsHealth (http://www.grassrootshealth.net ) recommends that a person's vitamin D level should be at least 40 ng/mL. Some neurologists recommend that patients with neurological symptoms should maintain a vitamin D level of 80-100 ng/mL.

Vitamin D3 supplementation is considered to be more effective than D2. According to GrassrootsHealth, the vitamin D level should be retested after 3-6 months of supplementation to determine if the serum vitamin D level has improved and to what degree.

[mresene]

Hi, everyone. First, thank you Scott1 for both validating my concerns and offering a potential solution to at least one of the issues. I bought a copy of "The Sinatra Solution: Metabolic Cardiology" on Amazon today, and I'm going to give it a read. I suppose as an English Lit major the idea of reading about ways to improve my health doubly appeals to me. If there is a holistic method of dealing with the fibro, I am all for it. I already take a high dose of Nortriptyline (generic for Pamelor) for chronic genital pain (also a nervous system issue), and any of the drugs they prescribe for fibro conflict with it. Not to mention the fact that I'd like to take less pharmaceutical drugs - not more - so I'm all about supplements.

To answer the other questions, Lyndacarol, my D was around 20 when it was diagnosed two years ago - very low - I took D2 for 6 months and got it up to around 40-something. I now take D3 and at last check it was like 54 or so...So by that newer recommendation still pretty low. And, NHE, I can't find the B-12 result...I just know they said it was in the "normal range," whatever that means. I am going to a very caring ophthalmologist on Friday next (they squeezed me in as an emergency appointment), and since they are attached to a hospital they told me they would be coordinating with specialists there to re-do bloodwork, etc. I'll be sure to mention the B-12 and D levels specifically since these could be impacting some of the symptoms, and I'll let you all know how I come out. They also want all of my previous MRIs so their doctors can re-read them, which is good, I suppose. Right now, I feel very wary of doctors and their dismissive attitudes, but I can't afford to ignore this problem with my vision. If not for that, I think I might have just given up. Again, thank you for the advice - I need to feel better again, and I think these steps will help.

[Scott1]

Hi,

The Pamelor is a tricyclic antidepressant. How it works and interacts is not really clear to me but what Sinatra suggests should be ok. If you accidentally overdosed on it or used it for too long some studies find a correlation with dementia. Magnesium is used to respond to that in the early stages. It works differently to newer antidepressants which are really called reuptake inhibitors.
It acts by slowing sodium movement through its channels and "sort of " acts like a reuptake inhibitor. If at some stage you are prescribed medication that turns out to be a calcium channel blocker, a sodium channel blocker, a potassium channel blocker or a ryanodine receptor antagonist, then check for contraindications. Sometimes the medications are prescribed on a "ready, fire,aim" basis.

Regards,

[lyndacarol]

I do have fibromyalgia and hypothyroidism; however, I'm not sure either of these explains the recent symptoms such as the neuritis. In addition, I'm worried because I have gotten a LOT worse in the last 5 months.
…
He then proceeded to do an exam of tender points for fibromyalgia (I do not know why since I told him I do have fibro when we first talked - it's not really up for debate at this point. Not only that, but it's usually a rheumatologist who diagnoses it as in my case). Not only did he do his own exam, but he was very rough. My right knee is incredibly swollen despite no findings on x-ray. It frequently snaps, crackles and pops like Rice Krispies. And it is painful to the touch.

Misdiagnosed Vitamin D Deficiency (9 min.)
with James E. Dowd, MD, FACR, ABIHM:


Interviewer: Because of what you said where a lot of doctors still aren't seeing this as a need to get tested for, vitamin D deficiency is probably still misdiagnosed as a number of other things… Is that correct?
Dowd: Yes, it probably is overlooked in a number of different diseases. Chronic pain, something that's rising significantly in the United States right now. There was a study that was done looking at chronic pain and they found that patients who had low vitamin D levels, below normal, were using twice as much pain medication as the patients in the pain clinic who had normal vitamin D levels. So there's a correlation there with how much pain you experience among patients with chronic pain.

@0:55 Another example of a disorder that is sometimes misdiagnosed and is vitamin D deficient is fibromyalgia, which is one of these chronic pain disorders….
@1:25 I'm not saying that everybody with fibromyalgia has vitamin D deficiency, but probably 70% do because 70% of the population is deficient.
@1:43 There are occasional patients with fibromyalgia where that is the primary driver of their pain and fatigue and misery; and when you correct that they get dramatically better.…

Interviewer: Could a person be deficient and not really know it? And is there any harm in that?
Dowd: In fact, most patients who have vitamin D deficiency don't know it – either don't know it because they don't know what symptoms are associated with deficiency, or they don't know it because they just feel fine and they've never measured… Symptoms, unfortunately, are often a fairly late sign in any disease process or deficiency or imbalance. Just because you don't have any symptoms doesn't mean that you're not at risk.

[mresene]

Lyndacarol, this is really scary about vitamin D deficiency -- you'd think doctors would push harder to test for this. I'm definitely getting retested when I see the new doc, despite taking supplements, as I suspect it's still low.

Scott1, I'm on the Pamelor for something called vulvodynia, specifically vulvar vestibulitis (chronic genital pain affecting only about 5% of women), it's one of the only known meds that treats for nerve pain such as this. I am worried it may have side effects, but every doctor I ask about it waves me off and says that shouldn't have anything to do with my symptoms, and the only alternative to the medicine at this point appears to be surgery to remove part of the vulva (shudder). So, I'm not really excited about the possibility of having to stop taking it. Every time I do, the pain comes back in about a week - I compare it to having an ice pick rammed into one's genitals alongside a 7-year itch...wish there were alternatives because it is killing me with the fatigue it brings on, but I'm seeing some of the best ob/gyns around. I'll run the book by them just to see if they think there may be any issues with the supplements it recommends alongside what I'm taking now.

[Scott1]

Hi,

I do hope you find an answer to that. I only raise it as some medications may contraindicate. Surgery makes me shudder too. I would keep taking it but look twice at anything new and be sure.

Best wishes,

[mresene]

So to update. I went to the ophthalmologist today, and they confirmed that there is evidence of optic neuritis (which I already knew) and ordered a Visual Evoked Potentials test. The scan of my optic nerve showed a bunch of yellow and red, but my vision was better today, so that's something. The nurse I saw was great - she promised me that they would get me a referral to a new neuro and some further bloodwork (I went to a local hospital network). The actual doctor, on the other hand, said none of my symptoms sound anything like fibro - they sound "ms-y", he ordered the VEP, he asked me if I'd "like" to see a neuro ophthalmologist, and then he said if the MRI showed no lesions he doesn't know who else he could refer me to and there was no point in him actually looking at it if a radiologist had already read it. I suggested bloodwork or possibly a rheumatologist since there are many autoimmune conditions that mimic ms and optic neuritis and a positive ANA (numerous times) likely point that way, but he just shrugged his shoulders and said he really didn't know, that I would just have to "wait it out." So, yeah, modern medicine...I think I give up. If it is something serious, it's bound to get worse at which point I can try again. And if isn't perhaps I can learn to live with all of the above symptoms like so many others seem to have done. I do want to thank you all for your suggestions and support.

[LizardKing]

The high ANA points towards stuff a rheumatologist should investigate.
Now, let's say you do have MS I would think that the fibromyalgia would be a MISdiagnosis and MS would be the correct one.
Yet, a high ANA points towards something other than MS or fibro, the optical neuritis points towards fibro.
Could be arthritis and something else. Educate yourself.
As you have seen, doctors can be flat out wrong and nasty.
Get your medical records and learn what they mean.
And I do hope you get the right answers and sooner than later....

[lyndacarol]

So to update. I went to the ophthalmologist today, and they confirmed that there is evidence of optic neuritis (which I already knew) and ordered a Visual Evoked Potentials test. The scan of my optic nerve showed a bunch of yellow and red, but my vision was better today, so that's something. The nurse I saw was great - she promised me that they would get me a referral to a new neuro and some further bloodwork (I went to a local hospital network). The actual doctor, on the other hand, said none of my symptoms sound anything like fibro - they sound "ms-y", he ordered the VEP, he asked me if I'd "like" to see a neuro ophthalmologist, and then he said if the MRI showed no lesions he doesn't know who else he could refer me to and there was no point in him actually looking at it if a radiologist had already read it. I suggested bloodwork or possibly a rheumatologist since there are many autoimmune conditions that mimic ms and optic neuritis and a positive ANA (numerous times) likely point that way, but he just shrugged his shoulders and said he really didn't know, that I would just have to "wait it out." So, yeah, modern medicine...I think I give up. If it is something serious, it's bound to get worse at which point I can try again. And if isn't perhaps I can learn to live with all of the above symptoms like so many others seem to have done. I do want to thank you all for your suggestions and support.

There are numerous articles linking vision problems, including optic neuritis, to vitamin D deficiency. If none of your doctors have ordered a recent vitamin D blood test, I urge you to request one.

GrassrootsHealth (http://www.grassrootshelp.net) recommends that the D3 level should be at least 40-60 ng/mL. What is your level?

Preventive effect of vitamin D3 supplementation on conversion of optic neuritis to clinically definite multiple sclerosis: a double-blind, randomized, placebo-controlled pilot clinical trial. (2013)
http://www.ncbi.nlm.nih.gov/pubmed/23250818

Multiple sclerosis (MS) presents with optic neuritis (ON) in 20 % of cases and 50 % of ON patients develop MS within 15 years. In this study, we evaluated the preventive effects of vitamin D3 administration on the conversion of ON to MS (primary outcome) and on the MRI lesions (secondary outcome) of ON patients with low serum 25 (OH) D levels. Thirty ON patients (15 in each of 2 groups, aged 20-40 years) with serum 25 (OH) D levels of less than 30 ng/ml were enrolled in a double blind, randomized, parallel-group trial. The treatment group (cases) received 50,000 IU of vitamin D3 weekly for 12 months and the control group (controls) received a placebo weekly for 12 months. Finally, the subsequent relapse rate and changes in MRI plaques were compared between the two groups. Risk reduction was 68.4 % for the primary outcome in the treatment group (relative risk = 0.316, p = 0.007). After 12 months, patients in the treatment group had a significantly lower incidence rate of cortical, juxtacortical, corpus callosal, new T2, new gadolinium-enhancing lesions and black holes. The mean number of total plaques showed a marginally significant decrease in the group receiving vitamin D3 supplementation as compared with the placebo group (p = 0.092). Administration of vitamin D3 supplements to ON patients with low serum vitamin 25 (OH) D levels may delay the onset of a second clinical attack and the subsequent conversion to MS.