Still in denial after 13 years.

[marti]

Does anyone have a problem with being in denial about your diagnosis? I was dx in 2001 and STILL have trouble believing it. I will post my most current MRI results which will show you why I have my doubts. I have a lot of the weird symptoms, but not some of the most major ones.

Been taking Copaxone for 13 years and have daily pain, fatigue etc now, without letup. I used to get rests or better days, but now it is constant. I keep asking my neuro about this and she keeps telling me the radiologists can't really dx based on the results of the MRIs. I get that, but still wonder. I have stopped the shots because of some strange side effects: chills, fever, shivering.

Result type:MR Head wo Contrast
Result date:11 April 2014 9:41
Result status:Auth (Verified)
Result title:MR Head wo Contrast
Performed by:Sullivan MD, John on 21 April 2014 8:06
Electronically Signed By:Sullivan MD, John on 21 April 2014 8:25
Encounter info:880014610849, Martin Center FY, Referred Outpatient, 4/11/2014 - 4/12/2014

* Final Report *

Reason For Exam
headache

MR Head wo Contrast
HISTORY: headache

COMPARISON: MRI brain 8/25/2011

FINDINGS: Multiplanar images were obtained through the brain without contrast.

Since the previous MRI exam performed on 8/25/2011 there has been no significant interval change.

IMPRESSION:
1. No acute processes intracranially.
2. Moderate high signal changes involving the white matter of both cerebral hemispheres most likely secondary to small vessel disease, demyelinating disease, or a combination of both. The findings were not classic for multiple sclerosis. No change since the 8/25/2011 exam.



Electronically signed by: John Sullivan 4/21/2014 8:25 AM

Signature Line
Radiologist Sullivan MD, John
Signed 04/21/14 08:25:05
(Electronic Signature)


Technologist EKM


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[Marco]

You may be in denial about the competency of your neurologist.

Why are you on Copaxone if they believe you ONLY have headaches? What information was used to put you on Copaxone to begin with? How does your neurologist read the MRIs? Or do you have one of those "special" neurologists incapable of reviewing films. Please excuse me if I am sounding angry -- I am! It's ridiculous that you have over 4,500+ injection holes and your medical team suspects you do NOT have MS.

Has your neurologist ever sent your chart to a colleague for a second opinion? I would schedule an appointment with a MS specialist for another opinion. The new doctor can only review what information they have so it's important they have as complete a medical record as you can put together. Have the new office request as many records as possible - you may need to sign release forms. Take as much medical history as you can with you. You may even be asked to deliver your medical records in advance so the doctor has time to review them. Please get a 2nd opinion ...

[KatieAgain]

Marti-Have you ever had a second opinion done by an MS Specialist?

[MSW1963]

Marti, I totally understand your uncertainty about your dx. My history is similar to your's, dx'ed in 2000/01, we are close in age and I don't have agressive MS.

I was dx'ed aproximately 20yrs after the most active/enhanced lesions stage of MS. Those 'good days' seem to be a distant memory for me too, constant pain, disconfort, fatigue, etc. I sleep regularly now for the past 2yrs, after untreatable insomnia for 10+yrs., which I think you struggle with too.

There's no doubt about my dx based on lesion load alone, but I still have days when I'm not sure that it's MS.

I don't understand what the radiologist can't dx re: "I keep asking my neuro about this and she keeps telling me the radiologists can't really dx based on the results of the MRIs." A dx is given by your MD, not the radiologist, and if I understand your post, you are dx'd with MS already, right? Sorry about misunderstanding this part of your post.

Take care and I hope better days are in your future. Soon.

[marti]

Why are you on Copaxone if they believe you ONLY have headaches? What information was used to put you on Copaxone to begin with? How does your neurologist read the MRIs? Or do you have one of those "special" neurologists incapable of reviewing films. Please excuse me if I am sounding angry -- I am! It's ridiculous that you have over 4,500+ injection holes and your medical team suspects you do NOT have MS.

Has your neurologist ever sent your chart to a colleague for a second opinion? I would schedule an appointment with a MS specialist for another opinion. The new doctor can only review what information they have so it's important they have as complete a medical record as you can put together. Have the new office request as many records as possible - you may need to sign release forms. Take as much medical history as you can with you. You may even be asked to deliver your medical records in advance so the doctor has time to review them. Please get a 2nd opinion ...

This MRI was NOT my first. I"ve had many, many to address tons of symptoms. And I've had at least 5 doctors confirm the MS. This one says "headaches" because I got sharp head pains after a bowel movement. They also did a MRA at the same time. Anyway, it doesn't change the fact that I am in denial. Probably because I just don't want to admit I have this disease. Guess I should have been more detailed in my question.

[Marco]

Again, I would get a 2nd opinion if for no other reason than for a sanity check. You really need to find out what's going on and hopefully relieve some of your symptoms. Over a decade without a definitive answer is quite long considering you've been under a neurologist care the entire time.

[marti]

Again, I would get a 2nd opinion if for no other reason than for a sanity check. You really need to find out what's going on and hopefully relieve some of your symptoms. Over a decade without a definitive answer is quite long considering you've been under a neurologist care the entire time.

Marco I've had several opinions and they all have dx MS. Things are just rolling along, getting worse and I hate to admit it. Don't want to give in to this. Have tried (and still take) several meds. Some help, some don't. Considering what this last MRI says, I just have my wonders. Looking for others who have had similar experiences with their MRIs. Thanks.

[KatieAgain]

Marti

I looked up your Radiologist. He is not normal radiologist. He is a Neuro-Radiologist.

I know you have several different issues, but this report does raise some flags and honestly I can see why you are in denial.

I agree with Marco. In all probability you most likely do have MS...but I think you should ask some very pointed questions to your Neuro and make sure he really is looking at the films vs. reading a report.

Your decision...not trying to push it...but I sure wished my MRI report read like yours.

And to reply to your original question, yes, I did the denial thing right up my first major flare...I was crawling on the floor with my elbows. Denial gone.

[misslux]

What does the 8/25/2011 exam say?

Accepting your diagnosis does not necessarily mean "giving in". Everyone's different, but for me, acceptance has caused a HUGE weight to be lifted and allows me to enjoy life as much as physically possible. Sure it still sucks but it doesn't consume or define me. I know that sounds cliché!

[PositiveMS]

Accepting your diagnosis does not necessarily mean "giving in". Everyone's different, but for me, acceptance has caused a HUGE weight to be lifted and allows me to enjoy life as much as physically possible. Sure it still sucks but it doesn't consume or define me. I know that sounds cliché!

I know what you mean about a huge weight being lifted. I was diagnosed in 1999 at age 19, and I lived happily in denial for 11 years. Actually I was sure they had made a mistake! Then suddenly MS decided to make a grand entrance. I tried to hide what was happening for about a year, fighting to hide it, not telling anyone.

I suppose I was in denial big time. But once I was no longer able to get by without a cane, it was kinda hard to hide it all! So it was liberating to just "let the world see it all". The cane was the best thing because it advertised there was a reason I was walking sort of funny. Otherwise might have looked drunk, haha.

It would be nice to have room for doubt about the diagnosis, SO nice!

[marti]

You know, I never really asked or wondered if my neurologist was actually looking at my films. She does not specialize in MS, but the guy who first dx me in 2001 does. Then, I was seeing a doctor who is my age and has MS herself. She DID look at the films.. even showed me the lesions.

For years there was never any doubt, based on the MRIs. But then when I started having them done at a different center the reports started saying that the findings were not typical of MS. So, you can see why I am kind of confused and why I am questioning all this. Maybe it's just the wording they are using.

I did ask my neuro last week about this and she seems certain this is ALL MS! But I do have tendinopathy, osteoarthritis, osteoporosis, Graves Disease, lumbar and thoracic disc bulges and Spondylosis. So..... the pain can be coming from all directions. I suppose the treatment is pretty much the same for all of it. My Rheumatologist is, thankfully, not pushing new meds on me. He knows I react strongly to anything new.

Anyway, it looks like some of you have had the same kind of "mental" denial going on that I have been going through. Thanks so much for all the advice and replies. Keep them coming guys!

[seal]

I'm like you Marti (if I understand your post correctly).

I was diagnosised in 2011. On my 3rd Neurologist.

They all started out "What makes you think you have MS?"
I tell them about MRI and Lumbar Puncture (which they have copies of the reports).

BUT, I always have that little bit of hope when I see a different Neuro(Specialist) will say "You don't have MS, you have...."

I'm not in denial, I accept and understand that I have MS.
For me, it's just that few seconds of hope.

As a side note: That is not the reason for changing Neuros.
Had to "upgrade " to specialist.

Wishing you well...

[pennstater]

Marti,

My denial always was during periods where no progression and I only had mild symptoms. About two years ago, the sporadic periods of denial left for good. That said, I still dream that I will walk in one day and they will tell me it was all a mistake

My neuro is not an MS specialist either, but reads the films and reviews with me. This last one was the first to mention other changes in cervical and thoracic spine, but still referenced "consistent with demylenating disease".

I would definitely ask for a walkthrough of the films.

[poppydarling]

So, you can see why I am kind of confused and why I am questioning all this. Maybe it's just the wording they are using.

Anyway, it looks like some of you have had the same kind of "mental" denial going on that I have been going through.

Absolutely -- nothing is definitive with this dis-ease, nothing! But my take on denial is somewhat different: my denial right after diagnosis actually helped me continue to have adventures and experiences without the reality limiting me. So, in some situations, I consider denial a friend!

That said, I agree with misslux: eventually, accepting "what is" frees you to move on to the next steps in your life. Growth is good, too!

[swpanther1]

I was dx in January 2000 (welcome to the millennium), after the MRI, lumbar, etc. I, too, am still in denial.

When first dx, my specialist neuro put me on Avonex for the first year....then had my yearly MRI and they switched me to Rebif, which I have been on ever since.

I tried the Aubagio last February, had a horrible, horrible reaction after only taking 7 pills (will not go into that here), then went back on Rebif.

I have MRIs now every three to four years (used to have one a year for the first five years) since I am not "advancing"--but have been experiencing some strange and frustrating difficulties....I'm 48 years of age.

Right there with you as far as denial....as are my two adult sons and younger co-workers.....which is frustrating when I do have a real issue/flare and need some help.

Another irritant (for lack of a better word) is that I don't know what is MS, what is pre-menopausal symptoms or PMS, what is "just getting older", etc etc. No one can really tell as most symptoms can mimic. I used to be the youngest in my office, and now I am the oldest in the division I moved to a couple of years ago. And of course, the "youngsters" have to use desk heaters in our small area (while wearing sleeveless shirts, etc), and don't understand why I can't tolerate it. Let me also say we live in New Mexico...it's up near the 80's for Pete's sake. Then they tease me (they don't mean to be upsetting, they are all good people) about "going through the change".....uhmmm, I do hold my tongue, but it does make one frustrated.

***sigh***