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Multiple Sclerosis Community
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Avatar universal

When you are STUCK in the Mayo System, NOW what?

This is more of a question/Statement. I have dealt with Mayo for my whole life. I was born here. I have had on and off symptoms of MS for years, at least since 2006. But with my history at Mayo I am labeled and am always sent back to Psych! I have be misdiagnosed and over medicated, under medicated and now “It’s all in my head” Now if I repeat their words to them they say “My pain is valid but I need to consider their Pain Rehab Center” “Because I have chronic pain and will most likely for the rest of my life.” I am asking myself, “I do and if I do why?”

I have almost every classic symptom of MS that come and go. Every new “Flare” as you call them I get a new symptom. But I also have a few Mild TBI’s and I have Bi-polar.  

I am on less medication than I have ever been on and I present with more symptoms then I ever have in my life. They come and go, with or without stress.

As soon as I complain of any pain or different symptom I am sent to a neuro doc and as soon as she walks in the door the first question out of her mouth is, “Have you ever had any Neuropsych testing done?” A 10 minute Neuro Exam and she is gone for 20 minutes and she comes back on says she looked at my psych docs notes and recommends I go to the Pain Rehab Clinic that was in 2013. I believe that program is about 40,000 dollars.

I went to another hospital. Took someone with me, that Neuro doc wanted an MRI with and without contrast ASAP, said, “What are we looking at here MS, CFS” Lets find out. I had a possible negative CT when I was 15 so she got that CT and another one that I had in 2011 from an MVA, (No contrast) and the radiologist report said, gray/white matter is within normal limits, but something about calcifications, also impression/report was: possibly representing mild demyelinating disease. That is to me an indication of I need to look farther into the fact this could be MS? Or Not, is it all in my head?

I have tried to read up on MS and ask friends that are Neuro docs that do work at Mayo but really cannot say much that is Mayo’s Policy.  No treating outside of the doors of the clinic.

I have gone to other 2 other hospitals and as soon as they either get my records for neuro for my TBI or records for my neuro for my headaches or even to look at the fact that I have these symptoms and see that I even have a psych history, BIAS right away. Send me right back to Mighty Mayo, the saviors.

I get almost every rare side effect to medications, was so over medicated for so long that I know have permanent side effects from these medications and I also take psych meds currently, 2 and at a very low dose. I believe I must be honest with new doctors in regards to the fact I have a Mental Illness and the medications I take and what I have been on in the past but it I believe “screws” my 2nd, 3rd, 4th, chance at any option at what a lot of other people have told me is a for sure MS Diagnose. No doubt in there minds. Even my doctor friends that have gone off record to tell me “Get out of this town”

It is my understanding that MS will only get worse if you do not treat it at least the symptoms. The sooner you treat it the better chance you have at a better quality of Life. Maybe I am wrong but that is why I am here at this site. I get up everyday just to fight for my basic human right to live as others with respect. Same rights as those that have money, but it doesn’t seem to happen, just gets worse as the world goes on.

Mayo is a great place if you already now what is wrong with you and they can treat you, A treatment clinic only in my opinion. I would not go there for Primary care or to find out what is wrong with me. Unfortunately some people who live here and are on limited income have no other choices, until we move.

Disillusioned2014 and I am looking for a clinic/hospital on the West Coast for help if anyone knows of one that will take Medicare. I am 39 soon, on disability and looking for support and information, websites, etc.
23 Responses
Avatar universal
I had a similar experience with a diagnosis very different from my MS and after 2 bad doctors, I went to a 3rd and told him I didn't want to tell him who I had been to because I did not trust them; that I wanted his unbiased opinion on my problem.  I gave him my symptoms but not my medications.

He ran his own tests and they came out very different than the other two.  He even put me on different meds and I was much better after that.  

If they refuse to see you because you won't tell them who your prior doctors were, then you don't want to deal with them anyway.  Many here have given you good advice and there are over 20 mimic diseases that look like and act like MS.  They have to be ruled out.

Be patient and like you have been told, keep an open mind.
987762 tn?1331031553
COMMUNITY LEADER
Hi and welcome to our little MS community,

Unfortunately, what you have described isn't uncommon anywhere in the world, when a person has a pre-existing dx mental health condition, mental health is often initially blamed. The only definitive way to get to the bottom of sx's sometimes is specific testing, though often the clue to neurological conditions like MS, is how the sx's behave and or present.   Psychological caused sx's may seem similar but its usually inconsistent to what happen's when the sx's have a physiological cause.  

MS is actually one of the most common conditions people with mental health issues eg health anxiety, conversion disorder etc become concerned about and many people who have a dx of MS, have actually had their mental health fully assessed as part of the diagnostic process. It is always advisable when the mental health card is put on the table, to have that theory fully investigated so it can be removed or if it is M/H, then better treated.

Your experience seems to be fish bowl and the only way i can see to get taken seriously, would be to get your psych involved, so that you can get the theory of these episodes properly explored and if there is the potential of if not being psychological you'll have some evidence of it and if it is psychological then you can get appropriate help in dealing with this aspect too.

My mother has bipolar and has had many physiological medical conditions blamed on her mental health, and its only been when she's seen new eyes and had tests run, that the actual condition has been dx. Our medical system in Australia, is very different to other countries but I expect bias is bias no matter where your from, so if you can please try to get fresh eyes and seriously consider getting your psych to help work this out.

Cheers..........JJ
Avatar universal
Oh believe me my psych is involved but I believe is drinking the "kool aid" so to speck at the clinic.

My psych symptoms are around the same times as my MS symptoms but I again am on less and less meds and my life gets better and better, less and less stress, better in all areas and I have these on and off symptoms of MS, strange ones at that of: paresthesia, dysesthesia, daytime fatigue(gets worse as the day goes on) as does the vision. When I have changed my routine and am not on medications that will make me tired (so the psych doc says). But neuro docs say yes that 2 mgs of Klonpin for RLS will make me tired that I take at night. So I only take 1mg now. I don't tell them that either.

On and Off vertigo, especially while I am lying down. Memory issues that will look like I am 80 yrs old, then I will have months of great memory. Then I have bladder problems, also come and go (Months at a time) Shallowing issues also come and go. I have had cognitive evaluations at times said I was functioning at borderline levels and at other times I was fine, normal levels. Balance issues (Oh but that is related to "all the psych meds I am on"  Really? What are those...? Articulate... in a conversation good luck on that one.

Do I think that is "All in my head" Well yes but not in the part they believe it is...

Disillusioned2014
757137 tn?1347200053
After on-and-off hospitalizations and still no diagnosis (and I went to some "fine" hospitals and had more tests than I can count), I turned to an alternative MD. We had a very long discussion. He did some very minor testing (actually to confirm his diagnosis)  I was well within a month. Modern traditional medicine it seems is all about tests and pills. I don't think they every really talk to their patients. And I don't care how prestigious the facility is. They all have the same incomplete training.
Avatar universal
I agree and I have been to alternative medicine but that costs money. I have some family that is in alternative medicine and are willing to help but they live in another state, until I move I just work on things myself.

My chrio doc says she believes 100% that I have MS and is treating me accordingly. I just keep going at this. I don't give up but also believe in Western medicine along Eastern. A balance is what is needed. I believe that the mind/body balance is a key to managing may key things in life.

Disillusioned2014
667078 tn?1316004535
I think finding a new hospital is a grand idea. I found this with Cancer. I started out at one hospital. If I stayed I would have died in August of 2012. I switched in the middle of treatment. The first hospital had not even figured out that it has spread to my other organs. The second hospital not only saved my life but my Cancer has shrunk dramatically.

You have to go where you are going to get the best help.

I have the oddest story with MS. I was sent to the Mayo in 1965 for a strange Neurological illness. I was an infant. They did not figure it out. I went to Neurologists until I was 15 and no one could figure it out. It was before MRIs. My Primary Care Doctor picked up on my Neurological problems in 2007 and finally after two years and a half a dozen Neurologists I was diagnosed with MS. My MS Specialist is sure I have had MS most of my life. The weird part is the progression for me has been slow.

I have had permanent damage from infancy double vision, vertigo, cognitive issues,left side weakness and headaches. Then the disease picked up in my 40's with new symptoms such as walking slower. If you saw me and did not know about MS you would not know I have it. Those who know me see that I walk slower than I used to.

It took them 4-6 years to find my Cancer and it was stage 4. It took over 40 years to find my MS.

We know our bodies. We have to advocate for ourselves. When you hit a dead end go somewhere else.


Alex
757137 tn?1347200053
Along with your regular treatments, try a non-gluten diet. Sometimes gluten produces weird symptoms that mimic other ailments.
987762 tn?1331031553
COMMUNITY LEADER
Your frustration is coming across very clearly but please do not let your frustration, lead you into believing more than you know to be true, because it will only cause you more frustration when you hear something you don't agree with and help cement your beliefs when you hear something that only supports it.........be open minded!

Basic truths...

MS has quite a lot of mimics, and because of the vast number of mimics, statistically a person is more likely to be diagnosed with a mimic, than they are to be dx with MS. Mimic's cover a broad range, there are many sx's listed as MS sx's but they are not exclusive to MS. Migraines, psychological conditions, central nervous system delivered and adverse reactions to mental health medications in general, as well as TBI's that you've mentioned, all have the potential to mimic MS.  

There are certain sx's and clinical signs that are more primary sx's of neurological conditions like MS eg. Optic Neuritis, Nystagmus, Diplopia, Uhthoff's phenomenon, unilateral hyperreflexia, Clonus, Babinski reflex sign, Romberg sign, Ataxia etc.

But the sx's you've mentioned are non-specific.. 'pain, headaches, paresthesia/dysesthesia, daytime fatigue, vision (depends), bladder, swallowing, vertigo/balance and cognitive issues' would all be more secondary sx's, because they don't particularly suggest neurological as the most likely cause, and could potentially be caused by many things.

Unfortunately, many mental health medications do cause adverse side effects so whilst a medication maybe an effective M/H treatment, it can cause totally new issues. Depending on the class of drug, quite a few are prescribed off label for neurological conditions eg nerve pain, so if a M/H drug can effectively tame some neurologically caused sx's, why wouldn't it have the potential to create the sx's too.

EG. My son had adverse reactions to his low dose anxiety medication.... increased anxiety, developed tremors, sx's that perfectly mimicked panic attacks, and most unusual it even stunted his physical development and it was 'all' caused by the medication.      

"the radiologist report said, gray/white matter is within normal limits, but something about calcifications, also impression/report was: possibly representing mild demyelinating disease."  

If that is all and exactly what your MRA report stated, then it doesn't really make any sense to me, because on the one hand its saying your brain is normal and on the other its saying it's absolutely abnormal and that just seems a bit odd. Keep in mind that an MRA is sequence specifically focused on blood vessels and not the same as an MRI looking for brain lesions and or demyelination.

Brain lesions are associated with migraine and mental health conditions, and IF the MRA was able to detect anything outside it's scope, it would not be able to be specify, so i'm wondering if it's possible that you've some how inadvertently read more into the MRA findings than you should?

This has literally taken my hours to write, and I hope I have provided a little bit of a different perspective for you to think about and consider.

Cheers..........JJ
Avatar universal
Luv and hugs to you.. I am grateful to you all, I really am. It is late where I am and I will look at the MRI report again to get the correct wording. I am not sure what an MRA is. I had an MRI with and with out contrast.

The hospital that did the MRI said the "possibly representing mild demyelinating disease."   and when Mayo's radiologist read it they said normal. I do believe it is who ever reads the report and what that specific clinic has for their guide lines. I have to head to dream land I am tired, I will be back, Peace, bless you all and hey thanks, I feel some peace with you all.
Disillunioned2014
987762 tn?1331031553
COMMUNITY LEADER
My apologies!!

I read "one that I had in 2011 from an MVA, (No contrast) and the radiologist report said..." as MRA and not MVA. An MRA is an MRI sequence often used for TIA's and migraine and my brain just ran with it......oh does MVA = Motor Vehicle Accident?  

Cheers..........JJ
1831849 tn?1383231992
Hi disillusioned -

You seem to be stuck very deep in Limboland. That's not a fun place to be.

When presented with the volume of info you bring to the table the easy way out is to point the finger  towards the "pain clinic". It's another way of saying "not my job."

If you're in Minnesota (assumption based on Mayo) there are options in Minneapolis, like the U of M or the SHapiro Center. If you can get in to see a brand new, non-Mayo neurologist I would let them do some of the heavy lifting. Rather than put a big file of history on the table let them ask what they want to know. Don't color the exam with information that has not helped in the past. I would not hide information, but I would limit the scope of what I shared.

Just one man's opinion :-)

Kyle
1831849 tn?1383231992
Hi disillusioned -

You seem to be stuck very deep in Limboland. That's not a fun place to be.

When presented with the volume of info you bring to the table the easy way out is to point the finger  towards the "pain clinic". It's another way of saying "not my job."

If you're in Minnesota (assumption based on Mayo) there are options in Minneapolis, like the U of M or the SHapiro Center. If you can get in to see a brand new, non-Mayo neurologist I would let them do some of the heavy lifting. Rather than put a big file of history on the table let them ask what they want to know. Don't color the exam with information that has not helped in the past. I would not hide information, but I would limit the scope of what I shared.

Just one man's opinion :-)

Kyle
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