stigmata of multiple sclerosis

[Irene5353]

I was actually told I did not have MS in 2009.  The clinic where I was seen for nearly 20 years told me they would not care for me.  I protested, had meetings, people advocated, but I was out.  Just today I was looking up records on an patient internet site and found that I actually had stigmata of MS but no active lesions.  

On the strength of this report I was taken off Copaxone.  I have noticed a downhill slide since then.  At this moment I am ticked off but I have so many crucial things to accomplish right now I need to table that anger and do the other things.

I definitely am contacting a lawyer.  Wow!  Check your medical records and do not take what one nasty neurologist says as biblical truth.  I think there is no biblical truth in medicine.  I have been off disease modifying drugs for 3 years.  

My neurologist will do an 3 Tesla MRI in the Autumn.  That should show something.  I had a suspect lesion in my thoracic spine which has been causing me so much pain and an increase in spasms if I move side to side.  It has progress since 1998 when I first noticed it.  

Persevere is my motto and I have in spite of being treated so badly - abusively - the stress has been enormous!

[SarahL2491]

Having been not only a nurse but a legal secretary and also shunned by several doctors for "calling them out", I agree with my fellow forum members.  You may very well take your offending doctors "to task" by pursuing legal action but you may shut way too many doors in the process.

There is a great "grapevine" among doctors about complaining patients.  I "waded" thru doctors for over 30 yrs before getting my diagnosis and then found out that the doctor who gave me my MS diagnosis is friends with the jerk I complained to him about most...........ah yes, hard to smile with your foot in your mouth.........

So truly think about this.  I know that you feel you have them squarely in the firing range, with your new knowledge from paralegal school, but heed the advice of my fellow forum family.  Bridges are sometimes hard to repair if you have burned them trying to play "gotchya".  Your MS truly does not need to be stressed out and stress will churn it up.

Wishing you the best and hoping I have not offended you, I have not meant to, just trying to cut thru the fog.

[Deb61]

I agree with Alex--you may have trouble finding a doctor to treat you if you sue.  Things are now going all digital.  I don't know the impact it will have in your case, but perhaps you should consider getting rediagnosed and on a medicine before filing suit.  That way you will have a professional's opinion and get the treatment you need.

I can understand being upset.  I would be, too, but your health should be above these legal procedings right now and the stress from this could put you in a nasty downward tail spin.  I don't deal well with stress.  I don't sleep well, and the fatigue, spasms, spasticity, and cognitive symptoms get worse.  

[Irene5353]

Alex - you are strong.  Wow - I had not read through all of your note.  I stopped at the cancer diagnosis and did not read on about the MS.  

I think a lot of women are misdiagnosed and undiagnosed and it is our lot to fight back.  

I was not misdiagnosed with a psychiatric disorder but a neurological one that had strong psychiatric overlays.  They said I had a seizure disorder and put me on those heavy duty seizure meds.  And when symptoms persisted they just upped the dosage. Crazy time!  The meds made me very depressed!  I also gained an enomous amount of weight on these meds.  

MS has mood issues associated with it but they come and go as much as the other symptoms.  I always find I am depressed before an attack - or it shows up that way. Then all of a sudden I cannot walk but I can shuffle with the best of them!  Right now I am walking as if I am putting on my shoes at each step.  Just sliding into that step.  I am sure it looks a little odd because it drew a few wide berths in the store today.  

What age did your MS begin?  I think many of us can trace symptoms back long before the first disabling attack.  I just ignored most of those symptoms.  I remember the first one was at age 8, then 17 and then 26 and at 32 it began with a vengence.  

Researchers recently discovered one of the genetic codes for switiching on disease.  That is important not only for MS but for cancer as well.  

If they can get to the switching mechanism in cancer they can keep those darn c cells from replicating themselves and metastising.  

I agree about the dogs and horses - you are lucky to have the horses and dogs.  I tried to ride years ago but my back is pretty compromised in the lumbar region so that is out.  Swimming is in though!

All the best!

[Irene5353]

Thanks Lulu - you are right!  I am a strong woman.  Only thing that has really stopped me is MS or the way it robbed me of the life I wanted but one does move on and adapt!  

[Irene5353]

Hi Alex,

I am having an MS attack so that is the reason for the delay...  

I have considered that very question very carefully and will continue to consider it.  I have time.  In my state a person has 7 years from the time of injury in which to pursue legal recourse.  I don't like to use the word sue.  Legal recourse or redress seems fair.  The MS community of neurologists is tight here but one has to consider how other patients will be treated down the road.  

I hope you are doing well with your cancer treatment and are winning!  I recently had to say goodbye to my 7 year old service dog after we fought for remission for 9 months.  Cancer is the #1 enemy that we should be at war with and using funds commesurate with political or territorial wars.  I believe all the funds used in Afghanistan should be curtailed forthwith and used to medical research.  One can hope for that day anyway!  

Good luck to you!  

[twopack]

The specific term "stigmata of MS" appeared in the original poster's RADIOLOGY REPORT.  I have no idea if the report was written by a native English speaker.  

I don't recall if the physician expert used the term.  I thought she just tried to explain what the report could mean.  Her answer may have sounded a little stiff but I'm sure the doctor would have cited sources if she was quoting textbooks.

[Lulu54]

Stigmata must appear somewhere in print because the expert doctor over on the neurology forum is not a native English speaker.  She does some research and quotes a lot from medical textbooks.  Interesting use of that word....

Irene, if you survived all that momma drama and the wrath of your father, you are a tough woman and ready to take on this next battle.  Good luck with returning to the land of the Dx'd.

[LilMinnie]

I hate to hijack this thread, yet I just wanted you to know that you are an amazing strong person and an inspiration to me. Thank you for being here and offering your wisdom.

Minnie

[HVAC]

This is an off the wall question but if you sue this doctor, will other Neurologists and I am not saying he does not deserve it, shy away from you as a patient? I am in a similar position with a cancer doctor but I decided my current care which is the difference in life and death since my cancer is so serious is most important to me. My new cancer doctor who I was so grateful for taking my case in the middle of chemotherapy (he could have refused me), worked with my first cancer doctor for twenty years and they are good friends as is my gynecologist. I personally would rather have the new good care than go after the old doctor and alienate my other two doctors who I like a lot. They know he screwed up big time it was obvious by my condition. I now also want to put my energy into beating stage III ovarian cancer and having a happy life. If I dwell on the first doctor that is not going to happen. The good thing for me is I have very little time or energy to waste. I snap a rubber band at my wrist every time I think of the first Doctor to get me out of the habit.These are thoughts I do not want to dwell on. They keep me up at night and I need my sleep to heal.

Sorry about your service dog. I have two. One is about to be certified with the State and the other is almost at retirement. I will keep her of course.

I was misdiagnosed for 44 years with my MS. I was labeled bipolar and locked up in State Hospitals as a child when I had MS I spent 30 years on heavy duty psychiatric drugs and was abused in the hospitals. A Psychiatrist figured out I had nothing mentally wrong with me but had a Neurological disorder. He got me off all the medications. Then I was diagnosed with MS in my 40's and had the diagnosis taken away by a Neurologist when my first one left town and then it took two more years for a diagnosis. My MS was in a progressive stage so I have no treatment. I learned to let that go. Then my Cancer took six years to diagnose and had spread to stage IIIC by the time I was diagnosed and I had a clinic who did not believe I was as sick as I was even though I was emaciated and could not eat and all the blood work showed I was growing worse and worse by the week. I left the clinic for better care as soon as I could. I do not dwell on the past medical mistakes I would only be bitter.

I hate spending time in hospitals and in lawyers' offices. I would rather be out riding horses and out with my service dogs with the time I have left so that is what I intend to do. I am a very happy person these days. The first of August I was dying tomorrow I am going riding. I prefer riding.

Alex

[Irene5353]

I can show damage done.  I had a diagnosis, on Copaxone, Copaxone taken away after being prescribed for nearly 10 years.  Just the emotional damage has been such that this doc should be in research treating primates rather than human beings.  

I am also close to being certified as a paralegal.

[Irene5353]

Thanks, by the way!  I have been dealing with this for years.  I looked up stigmata of MS on Good Search, (good search pays $.01 for every search to the charity of your choice.  My charity choice is The Gift of Sunshine.org because they funded some of my service dog's cancer care during the past year and when it was most critical.)

[Irene5353]

Wow, thanks TwoPack!  

That is the most detailed answer ever!  I am having a terrible morning, been hung up on because I could not immediately get what the caller was referring to - hung up hard in my ear by the Vet Practice that refused to x-ray my service dog when he became lame.  He is only deceased a little over a month.  They have never offered condolences. (Needless to say I took him to a highly regarded Vet School.)  But I had to get the billing straight - turns out they were overbilling me.  I then looked up the code of professional conduct for Vets - very interesting.  Did I mention I am studying to be a paralegal?

Yes they had diagnosed me. An MS neurologist of some renown by the way.  Then he retired.  Then I was put with another doc who I knew was lazy - because when you called in if there were new sx he never called back - never for years.   But the neurologist I wanted in that practice went to NY to Columbia-Cornell.  A lot of good doctors have left that practice and I have from heard of other MS patients - first hand - that they were told to go elsewhere.  Reseach rules?  

I was kicked out and told I did not have MS.  Yes,  I am in another MS practice but on the strength and professional kinship(?) of the physician who undiagnosed me I have not been prescribed MS modifying drugs, I wanted to continue Copaxone which I had been on for nearly 10 years.  I have not been on it for 3 years!

I was led to believe it was a conversion disorder - it is not.   I am emotional at times - that lability hits me - and this always precedes mostly an exacerbation of the ataxia, etc.  

At this time,  I am have trouble processing aural information - it is really bad at times and I ask people to repeat and repeat.  

My neurologist wants me to have a 3 Tesla MRI and I said the fall but maybe sooner.  

It is August, 2012 so the heat does not help any of this and I have enormous stress getting together receipts of my medical expenses to justify my existance to various programs - I am very poor because of the way this hit me and the way my more than well off family chose to react to my disability.  

Looking back, I have probably had this since I was a kid - I was teased for my heavy footsteps at times - called a horse.  My balance as a kid was the best in my gym class - I was schooled in the UK for awhile.

I have mild symptoms of PTSD which are exacerbated by stress but these have been treated.  I am not in denial about the effects of stress from witnessing domestic violence since I was age 5 - and then having a life that repeated some of those aspects.  I learned to rescue my mom my whole life which she was glad to take advantage of but abusive of me emotionally and sometimes physically.  She now has Alzheimer's which is why I could not attend to all my needs when the neurologist was kicking me out of the practice - I did my best.  Momma drama has ruled my life for too long.  
It wasn't until the death of my service dog, a smiling and loving golden retriever, that I realized how healing acknowledgement and a welcoming smile can be.  My mother turned away from me within 5 minutes of seeing me and found other ways to keep me out of her sight for most of my life.  I think she was mentally ill looking back and I learned not so practical ways of living because of that.  My father was violent, brilliant, top of his field, but violent in a cruel way.  The last letter I have from him begins, "Are you cured yet?"  I suppose he thought he was being funny to joke about his daughter's disabling incurable illness.  

I digress a little.  Sometimes someone so abused does not recognize or fight back against abuse learned but it angers so much.  

When my service dog died I really understood the anger.  I miss him all the more but am really grateful for his gift to me.  Animals heal more than we know.  

So now I am going to call and get the MRI.  I have not seen this neurologist in over a year - we communicate by email. (I was more than a little busy taking care of my wonderful service dog through his inoperable mast cell cancer for nearly one year and taking classes, online, in legal studies.)   I guess I need to make an appointment.

Thanks again TwoPack!  I think you have helped not only this writer!!!

[twopack]

In the medical setting the term stigmata refers to a mark or peculiarity that helps identify or diagnosis a condition.  Thus “the stigmata of MS” on a MRI might refer to lesions which appear in classic areas of the brain or ones which form a pattern commonly seen in PwMS (such as the Dawson’s Fingers configuration).  

It doesn’t seem to be a term commonly used by radiologists but it did show up in a Q&A post on the Neurology forum.  Anyone interested can have a look here: http://www.medhelp.org/posts/Neurology/MRI-results/show/1510224#post_6861135  ;(It may be worth noting that the expert response is from a physician who lists anesthesia as her specialty.)

I’ll echo the thoughts others have shared with you here Irene.  It always seems especially cruel when doctors see fit to remove an established diagnosis of MS and/or suspend successful treatment.  It’s worse yet when this is done with no effort to establish an alternate diagnosis or treatment.  No wonder it feels like this is just a means to push a person out of a practice when there is no further interest in an individual’s treatment or well-being.  

Do I understand correctly that you were treated for many years before this MRI result was used to “undiagnose” you - or deem you unworthy of further DMD treatment?  Do you have any copies of your old records through the years?  I’d say adios to the loser doc(s) and forget wasting YOUR valuable resources on THEM.  Put your energy toward gathering whatever records you can and finding a doc who treats PwMS in a respectable manner.  It doesn’t sound like you should have a hard time ‘proving your case’.

BTW, why is it that most diagnoses on a personal medical history form are accepted without question but MS is challenged regularly?   Put a check by hypertension?  Okay, you have hypertension.  Mark depression?  Take certain prescription drugs?  No questions likely asked about who diagnosed that.  I’m just saying.  It seems odd we are so often required to ‘prove’ we have the very disease we strive to rid ourselves of.

[Irene5353]

It just means inactive MS lesions.  No active lesions.

[Irene5353]

stigmata was used in the radiology report.  I supposed it is used to mean scarring or shadowing in a radiological sense.  It is not a diagnosis but a description of old lesions per the radiology report.  

I was diagnosed and undiagnosed on the strength of the rad report.  The report only said no active lesions it did not say I did not have MS.  I was told by the MS specialist I did not have MS.  That is wrong!  

I was dealing with my mother's stroke and Alzheimer's disease at the time.  It was an incredibly difficult time.

[supermum_ms]

Hey there and i am sorry your getting all this garbage when you so dont need it. HUGS!!

I was so stumped by the "stigmata of MS" that i went on the hunt last night trying to find something, just anything some where in the literature that uses this exact term, and came up with nothing, absolutely nothing! I'm wondering if this term is implying mental health (eg conversion disorder) with out actually saying it out right, though its a total guess based on the psychological eliment commonly associated with stigmata.

I dont exactly understand why your dx was revoked but i gather that based on this report that uses this term and by not having active lesions whilst you were on copaxone, that this was enough rational for revoking your dx and why you no longer needed the copaxone. From my perspective there would have to more to it for it to make sense, though it doesn't really change anything, its already happened so getting the dx reinstated would be the priority, if you haven't already done that.

I was also trying to work out what grounds you'd have to sue, and i'd think you'd have to prove harm and thats going to be very difficult. MS isn't a predictable condition so determining that you've declined and been harmed due to denial of copaxone and it not being from the natural progression of the disease, would I think be a pretty uphill battle. Personally i'm not sure there would be enough satisfaction, for what i'd have to go through just getting the situation into court.

If anything, i'd make sure i had enough evidence of a medical error (dx reinstated, active lesions etc) and then make a complaint to the medical board and find out if its possible to get it expunged from my medical records, basically trying to keep my energy and head space on whats going to ultimately be more helpful to me. Just think about what you want and what you need, find the middle ground and make sure your the priority.

Hugs...........JJ  

[rendean]

Hi,
I am sorry to hear of your plight. As a former nurse paralegal, you have to show damage done by the offending party to prove  failure to diagnose or treat.

I hope you do not have to resort to legal action to get your medical needs treated. Remember , that most first consultations with an attorney should be FREE while they determine the validity of your claim.

Wishing you the best,
Ren

[Lulu54]

I was struggling with the stigmata comment as well - perhaps you are meaning the stigma of MS, which would be akin to being branded with the MS label?  

Anyway, the question I have is why did they stop treating you?  What was the reason they gave for doing this?  Can you take your records and see a different neuro?

[HVAC]

I am not sure on what grounds you can sue. I know you are upset an have a right to be. A cancer clinic ignored my illness until I ended hospitalized at another hospital in bad shape and that is not malpractice legally. I still have to pay them $10,000 out of my own pocket on top of the insurance. I also have to pay thousands for the hospitalization to save my life. I have been banned from Neurology clinics and had my diagnosis taken away. I just found a new MS Specialist who diagnosed again a year and half later. The only true way to tell if someone has MS is after death looking at the brain and spinal cord and seeing the scarring. When I got bad cancer care I went to another hospital.

Alex

[SarahL2491]

I'm confused because "stigmata" is usually associated with religion as in:
stigmataplural of stig·ma (Noun)
Noun:
A mark of disgrace associated with a particular circumstance, quality, or person: "the stigma of mental disorder".
(in Christian tradition) Marks corresponding to those left on Jesus’ body by the Crucifixion, said to have been impressed by divine...

Who told you this is what you have?  Am curious as to why the clinic won't see you anymore if you went there for 20 years?

Perhaps you need an MS specialist to sort this out?

[Irene5353]

old lesion activity as best as I can tell from earlier posts in this forum...

[vamanos]

Hi Irene,
I am sorry for what you are dealing with.

Might I ask, what is stigmata of m.s?