stubborn neurologists!

[SarahL2491]

Off and on for last 6 yrs have had MS symptoms.  Falling, numbness, temporary blindness after hot shower, iritis, very high epstein virus levels with no history of anything to cause it, confusion, blurred vision,

My eye doctor is convinced I have MS, everyone I know who has MS says they started the same way.  I can't have MRI because of pacemaker, last neuro refused a spinal due to age, are there any other tests?  I have never gone to hospital when having episode due to only Medicare insurance so my episodes are not documented.  I lived in new england for almost 30 yrs but he said, you live in FL, people don't get it here, last neuro said people my age get rapid and quickly repeated episodes, but research says many people go undiagnosed.  neuro tried to blaim it on fibro (which I don't believe in) and alzheimers and then recantd the alzheimers.  Twice in 3 yrs I showed up in his office with fully dilated pupils and letter from eye dr who also saw shadow on outer optic nerve, which disappeared after 2 yrs and he threw letters across desk and said I don't care what your eye dr says.....I would think those would be documented episodes.  2 days elapsed between eye dr and seeing the neuro.sigh.
any suggestions.....or do I go thru life saying I am "undiagnosed due to neuro pomp and circumstances"  

[SarahL2491]

Thank you for your warm welcome!  Yes, I know they have to assign a Dx to get paid and of course, they took the great and wonderful new black hole "fibromyalgia".  It's a quick fix and covers anything that could possibly be wrong with a person...........and the funny thing is tht the meds they gave me, the insuranc co refused to pay......ha ha ha....they didn't work anyway.
Fibro is the quick fix when your patient doesn't fit the textbook s/s of MS and I have yet to meet or work with an ER doc who believes it is real.

[SarahL2491]

Yes  am frustrated; I was merely stating that I presently take no medications!
When I was working, rather than REALLY find out what was wrong with me, they had me on over 25 meds.  I would go the pharmacy, spread them out and say "pick a card, any card".

When I quit work, I could not afford them anymore and went off them.  Interestingly, the symptoms were still the same, with or without the meds!  Do miss the anti depressants but they were a devil to kick when I had to take myself off of them.

I have requested those papers from the pharmaceutical companies and the last one I got was 26 pages of information.  I was NOT giving someone I did not know THAT much information about me.  Not knowing what happens to that information after it leaves me.  No way.  
Sorry if I misled you, sometimes I have cognitive problems and tend to talk "nurse ease" or just use enough words to say what I mean, without lots of detail !

Thanks for replying!

[Sumanadevii]

Yes, Sarah, without a doubt I wanted to know but I also knew I would take the medications offered.  Maybe it is the way you state on your profile that you don't take medications that led me to think why bother if you were not open to taking them.  But what you are saying, it is the expense and lack of insurance.  I do know that many of the pharmaceutical companies will help with DMD's....So, that may be the answer for you.

And, I am not frustrated but felt you were...lol

[RedFlame]

I forgot something very important.  

You needn't wait for services.  Your doctor has to give you some type of diagnosis in order to bill and receive reimbursement.  He/She can also order certain services including home health services, visiting nurses and social work.  Once you have one service others will open up for you.    

Red

[RedFlame]

Welcome to our forum and support community.  I know how horrible it is to wait for so long and then have test after test.  All of us have had to go through the process of being diagnosed, some for weeks, some months and others years.  There are so many different variants going on with MS.  Some are diagnosed quicker because they have the right amount of lesions in the right shape and in the right place.

Peole who are diagnosed 'quickly' are not more or less sick than anyone else.  

I just want you to feel welcome and to know that we are here for you.  All of us have a different story and are in different places with the disease.  

Red

[Nancy T]

Hi Bob--I didn't mean to suggest that VEP and OCT were substitutes for each other--just that OCT is apparently something newer (I guess "more advanced" wasn't really the right term).

Sarah seemed to be asking if there were other tests she could get, and I hadn't seen any mention of these two in the thread.

Nancy

[COBOB]

OCT and VEP are very different tests.  OCT concentrates on the retina and it's thickness and VEP concentrates on conduction velocities of the optic nerves, chasm and optic tracts.  They compliment each other, but are not substitutes for each other.

Bob

[Nancy T]

What about visual evoked potentials? And I think there is something called OCT, which is a more advanced eye test. These are not diagnostic (I don't think), but if you were to get positive results on them,  you might (possibly) get taken more seriously. If negative results, that might be helpful information for you anyway.

Nancy T. (11  years of symptoms but no diagnosis--never had spinal tap or evoked potentials except auditory.)

[SarahL2491]

That's on my list of questions to ask her.......if I can find one that accepts medicare!
most want you to pay and then they will file for you...........
seniors just get rolled on over and over

Thanks for thought though, guess we both had it about the same time!

[Lulu54]

just a thought - is there any way you could ask the opthamologist to refer you to a neuro-opthamologist?  There are some people here who got their dx that way and continue to be treated by the  neuro-optho.

as  I said, just a thought.  

[SarahL2491]

Thank you for your reply, It was a breath of fresh air from someone who obviously understands where I am standing at the moment!  

Glad for the comment about the LP.......I really don't want that done now, especially after 2nd neuro didn't want to.  He said he wouldn't let his mother go thru it and he wouldn't do it to me, but other than that, made no attempt to prove or disprove my Dx that I came up with.  

I have stopped falling, at least I can be thankful for that!  I do detest broken bones, having had a couple!  I did manage to find an electric wheel chair at a super price from someone who passed away, and have it stashed in the "whenever" closet.  I have also learned that medicare will pay for the chair but not the stand to haul it on the back of your vehicle, like people who use them never, ever leave home !!!

I have started keeping a journal and could kick myself for not doing it years ago; I stopped after the 2nd neuro wanted to label me fibro/mental/alzh and couldn't make up his mind!  

My greatest supporters have been my MS friends who say I am like looking at a mirror of themselves "in the beginning" before their Dx.  
I have joined the forum and will be a listening ear for anyone wanting to vent!

Nice to meet you, invite me as one of your friends, I can't get that feature to work on here.

[Lulu54]

Hi SarahL,  Let me add my welcome to the batch here.  I so understand your desire to have an official label to affix to your woes.  If you have a name, the rest of the world won't look at you as if you have made the entire thing up.   There are certainly lots of people here wanting the same.

Our dear Quix and I were both dx'd in our 50's, outside of that perfect age group.  Ess, who is off recuperating from a broken ankle right now, was dx'd in her 60's.....  Twopack (Mary) falls in our age group, too.

You already know that young people don't have an exclusive claim on MS.  My dx was at 54.

We also have a number of people here struggling with that damn doughnut too.  It just makes no sense to most of us how you can be denied treatment....

I wish there were a new test that could be administered.... we're still not to that point, which really stinks.  The lumbar puncture can't prove or disprove a dx of MS either.  It can lend supporting evidence but is not enough on its own, so keep that in mind.

I hope we'll see you around more - Lulu

[SarahL2491]

Your comments were very interesting.  You quiz like you are frustrated!

I do not take meds because I cannot afford them, much less the insurance.  I exist on Social Security.  I do have a med policy but of course it has the great donut hole in the middle.  I cannot afford the meds to even get to the donut hole, much less get thru it. (LOL) and I do still have a sense of humor about it.

Why do I want a diagnosis?  Several reasons.  To know.  To get assistance with medications and programs which are not available to people without official diagnosis.  I am aware of the percentage of assistance that DMD help.  I am even amazed at the number of neuros who do not know there were two studies done proving epstein barr levels elevated were linked to MS........

I am assuming you have MS based on your reply.  Didn't you want to know?  Didn't you want a label so you could go on with life knowing rather than everyone thinking you were a hypocondriac?  I know that isn't spelled right but you get the idea.  Yea, I tell people I have MS because I know I do, in my heart of hearts I do, and I told the last neuro that I probably would die before it was confirmed but I knew even if he wasn't willing to solve the puzzle.

I have symptoms that would allow me assistance with equipment and supplies if diagnosed.
There is a new label out for isolated episodes where you can have one and then not another but as I suffer thru mine, knowing that if I go to the ER the only thing they are going to do is want to do an MRI and/or a lumbar, why spend the money I don't have.

I just hoped that by going on this forum, someone would know of some new testing that I could point out to a new neuro......

Thank you for your reply

[SarahL2491]

Thank you for your comments.  Yes, it is frustrating and my MS friends tell me it is.  Some just give up, say they have it and move on.  
I will be 69 in February.  I have seen 2 neuro's and walked away feeling degraded by both.  They don't seem to like nurses who know a little bit about medicine.  Guess they can't give as many BS answers.  My eye doctor is an opthamologist and so is her husband, as I told the prior person.  

I am not looking forward to a lumbar either, I have enough arthritis problems with my back, I don't need to be unwalkable because of a wrong move.  I have assisted in many lumbar punctures in the ER and they frighten me beyond words.  I would have to be totally knocked out, way past the use of versed!

My first neuro ran an MRI, said you have DJD and arthritis and there is nothing wrong with you.  My second neuro said I am not rerunning these tests just because you want a 2nd opinion......gee I thought I had that right?  He was upset because I wouldn't go see a psych dr, which from my MS friends, they try and get you to do as they think its all in your head, and of course, I wasn't cute, 21 and blonde, so wasn't an interesting patient.  I was a middle aged RN, quoting facts and figures and producing blood tests results and studies that pointed in the direction of MS.  I have done extensive research.  I have 3 cousins with it.

The only rationale they WANT to give is old age, fibro, and "you live in the south, people don't get it here".........gee I know 10 people who never left the state of FL with it.

They won't do any other tests, just want to put me on Provigil to help me stay awake, which insurance won't pay for as it doesn't fit the criteria.  They won't give me pain meds or anxiety meds.  They will give me compazine for leg cramps, which does help me sleep sometimes..........so I live on Aleve, Ibuprofen, and icy hot and heating pads!

Having no insurance other than medicare, no one is interested in finding out what does cause the symptoms, and of course, you have to have 2 episodes lasting more than 24 hrs and about 6 months apart, documented by a neuro to qualify for official diagnosis and any help

Thank you for your warm welcome.

[SarahL2491]

Thank you for your reply.  Being a retired RN, I can understand your description of the codes!
My eye doctor IS an opthamalogist, both she and her husband, and she had worked with my eyes for over 20 yrs.  She has many MS patients.

They have refused to run any other tests, just automatically want to lump it into the brand new catch all black hole, fibro.  The neuro said I just needed physical therapy to help my balance.......really, like pushing stretchers and working with patients for 12 hrs a night wasn't enough physical work!

Thank you for the list of places.  I was on the list to go to Shands and then my doctor dropped dead (my primary also agreed with me) and then we went from dr to dr trying to find a new one we liked with no success.  Even the last primary I found agreed with me.
We now travel to babysit our children's houses during the year and insurance doesn't like people who want drs outside the "area" of their insurance and drs seem equally squirrely about treating pts who are not around for follow up........which leaves me only walk in clinics.

[Sumanadevii]

Welcome to the board, Sarah.  I am just curious.  On your profile you state you don't take medications so....My question is why would a diagnosis be important?  You know there is no cure for MS.  Most people with MS take DMD (disease modifying drugs) which gives us a 33% chance of preventing more damage to our bodies.  If you prefer to not take medications, what good is there in knowing?  

[wiggles94]

Hi Sarah and welcome.
Sorry you are having so many problems.  Getting dx with MS can be a long and frustrating process.

How old are you?

Is your eye doctor a neuro opthamologist?

How many neuros have you seen re these symptoms?  Has your neuro given any reason for symptoms?
You say they can't do MRI and won't do LP - what tests have they done to look for reasons for your symptoms?

Sorry for all the questions - but there are some great people on this site who may be able to give you some advice with a bit more info.

Take care and all the best to you.
Happy Holidays!

[COBOB]

If your "eye doctor" is an Optometrist, I'm not that surprised.  Most MDs and DOs will not take a "diagnostic impression" or clues from an Optometrist.  That is just the way it goes with allied health professionals.  

Most Neurologists will take input from an Ophthalmologist or Neuro-Ophthalmologist,  Keep in mind that Neuro-Ophthalmology is a subspecialty of Neurology (at least in the US.) These are Neurologist that specialize in neurologic vision disorders.  

My suggestion would be to go get an evaluation at one of the MS Centers in FL. There are MS Centers at USF, Vero Beach , Sarasota,  and Orlando, that I know of.

I hate to say this, but private practice Neurologists seem to have an issue diagnosing MS.  There could be a few reasons for this, but I think one reason is that "pre-diagnosis" workup visits are "Established Outpatient 40 min : CPT Code 99215"  Once you get diagnosed I'm guess that the code drops down to something like "Established Outpatient: CPT 15 Min Low Sev Problem Code 99213".  For the private practice groups, this makes a big difference.  For MS Centers and hospitals with a larger catchment, this is less of a problem and hospitals usually code more correctly.