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1207048 tn?1282174304

Did you resist or doubt your diagnosis?

I might not make much sense, or this may get long, so I apologize in advance.

My emotions lately are taking me by surprise. Starting in January I was pretty darn sure that MS was the reason for my symptoms. I then was admittedly kind of frantic for a diagnosis and a chance to use DMD before I have a major symptom. I could not find another diagnosis that fit my symptoms. My PCP and neuro could not find another diagnosis. While my MRI and LP were considered normal, I was diagnosed based on what my neuro saw on exams over 6+ months and my symptoms.

In August my neuro said he is 80% sure I have MS and offered DMD. I was relieved! Yes, part of me went "Whoa, ok. I gues this is for real now" but most of me went "Ok! My best chance of delaying progression! I'm ready for my shots nurse!".

It's been a while and my emotions seem to be taking over a bit. I've been thinking the last week that I'm doing pretty ok. Not what I was like 2 years ago, but not too bad. I haven't had the overwhelming fatigue in months. I am fighting a head cold (and what I'm suspecting is the beginning of a UTI) but I'm not a complete mess from it. A partial mess, yes. To be honest, more like 65% mess and 45% just like always...but I was expecting a return of the fatigue and every problem I've ever had showing back up every time I get sick and I don't think that has happened this time.

In the last week I've starting thinking...what if it is not MS? Why am I doing ok lately? And, then I have to remind myself that I had to get my haircut (it's a cute bob cut, DH loves it LOL) because I couldn't brush my hair without having to rest my arms. Or, how I need to rest them when I do my daughter's hair. She has beautiful long curly hair, has never had it cut, and I refuse to cut it just because my arms get tired! I remind myself how if I see that my older boys forgot to unload the dishwasher before school it almost brings me to tears because I'll have to unload and load it myself. Or all the other adjustments I've had to make to my daily routine.

I really was expecting to be diagnosed with MS and I don't know why I'm now somewhat doubting it. Is this a normal part of the acceptance process? How do I get past it?

I would really love to hear how you all handled your first few months after diagnosis. I can imagine it will help others who are newly diagnosed also.
~Jess
14 Responses
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989689 tn?1333548520
When my eye doctor brought it up as a possibility, I didn't know much about it. After reading, and a few months and a lot of test (including a bad spinal tap) I was actually relieved. All the years of symptoms with no answers made me take a breath of fresh air. Hated that I had it, but was more than relieved to get an answer finally. No more "your numb cause of bad circulation, your balance and dizziness is cause from getting up to fast".
Helpful - 0
1453990 tn?1329231426
Sorry about your problems.  The eye doctor and OCT can only test a very small part of the optic nerve.  The optic nerve runs from the back of the eye to the back of the cerebrum.  Really the only test that can test the whole optic nerve is a VEP.  Your Neurologist can arrange one.  Mine was positive.  

You seem to have a different problem from many of us.  I have a demyelinating disease, but that is as far as the diagnosis goes.  On top of the feet and left arm pain, I had the bout of ON and a case of Trigeminal Neuralgia.  For many of us, it is hurry up and wait.  Lots of tests and expense, but still waiting on a diagnosis that may lead to some form of treatment.  You have a diagnosis and something that can be treated.  Many of us wish we could be there rather than Limbo Land.

Bob
Helpful - 0
Avatar universal
I am glad I found this site. Hopefully this will help me to come to gripes with this MS- do I have it or not! I trend to say (thru faith)I don't have it. It all started for me two years ago. I exhausted myself along with heavy bleeding(for two years lots of fibroids) with being a woman and becoming anemic. Pulled my low back muscle along with it (I was already warmed up after 40 mins. of cardio) and it hasn't went away.Went to doctors-take iron pills. I did feel funny like s'thing wasn't right. Has numbness, just worn out. Did a lot of web surfing thinking all the symptoms I had could of been anything but it did fit with pre menopausal/an. I went to heart dr. that did a MRI he sent me to a Neurologist  and right off he said MS and wanted to treat me. Ev'time I went to his office "I was prescribe" meds to which I did not get them filled-I did think twice about filling one that  he said I would def. lose weight-LOL He did all the test. Did a second MRI and no change still wanted to treat me as if I had MS (his words). Did a VER again-I was totally upset (had been crying) hot flash or room was hot and said not good -you have MS I totally cried and felt so alone and the WHY ? came into play. Had an Ablation done 7/09, could of done hysto,was scared!  No bleeding/spotting for 125 days so far (yeah). I still have pain down there,now wish I would of had hysto done. I have been highly stress from moving and have been exhausted twice  which trend to make me feel this strange worn out feeling. Two months ago had this RT. eye pain which I went to reg.  eye doctor.Optic nerve fine. Decided on my own to have an OCT done. It wasn't normal. Eye Dr. sent me to Glaucoma Dr. which he said e'thing looks fine except my OCT scan/dry eyes and to come back in ten months. My eye pain has almost ceased. I thought it was b/c I had my  eyebrow wax-hurt more this time longer. Pain is in the crease and below my eyebrow-aching feeling . I am sure I have left out s'things. I have been healthy blood pressure,thyroid (since last Nov.09 ) until I exhausted my self two years ago in 08. I did have severe migraines for three years from 93-96. I feel like I have spent so much money- time for NO defiant" answer just take this medicine which I have totally decline unless  I have a good flare up (I pray not )  then I know I have MS and I then will do what I need to do. At my last visit with the Neuro,he pushed back his chair and said well it could be celiac disease it mimics MS. Gave me a order to get blood test which I decline to do-all..... the blood I gave for all the blood test the Reg. Dr. OBGYN and Neuro and bleeding galore from my erratic  periods :( I said good bye hug each other. It's been a year now and this eye thing came up so now i am wondering  along with the OCT scan don't look right and the Glaucoma Dr. saying your ON looks fine and you have the start of carteracts(sp) which will have to be dealt with later on in life. I do get worried and know that doesn't help !!
Helpful - 0
1253197 tn?1331209110
Jess,

Well Bob beat me to it when I read your post and then the responses, as I would have also gone down the Elizabeth Kubler Ross path.  However even when you have reached the acceptance stage, it is easy to become complacent when you are in a good phase and to start to doubt the dx.  

I am sure that there are many of us who think and hope that it may not be true and that little bit of doubt can foster a sense of unrealistic hope as we look for any evidence that could disprove it. Sadly a new relapse (for those with RRMS) is usually the unwelcome reminder that the MonSter lurks within.

Love Sarah x
Helpful - 0
749148 tn?1302860959
Hi Jess,
Yeah I think you are going thru a normal process... I was diagnosed 2 years ago with PPMS and told there is no medication for this.  So... I spent my beginning months inthralled in research.  I was convinced that I was going to find something that would take this diagnosis away, after all I worked in the medical field and thought I knew enough to find what others were telling me was unavaliable.  I guess this made my beginning months easier on me.  I then had to deal with severe cognative and memory issues causing me to have to leave my job of 13 years as a medical office manager.  So... I began the fight with insurance companies and SSDI for what I had paid into for so many years.  I then advanced to the admitting to friends and family that I had PPMS and educating them.  As each stage of my life advances I find something else to fill the void of my life as it use to be.  Maybe this is my way of avoiding acceptance or maybe I've totally accepted my diagnosis, I'm not sure.  What I am sure of is it seems to work for me... you need to find what works for you and run with it.  This is your life, do what works for you! :)
Sorry for the rambling... Debbie
~live as if all your dreams came true~
Helpful - 0
147426 tn?1317265632
Excellent discussion.

Jess - you analyze the situation like I do.  

What is the worst thing that will happen if I take the DMD and it's not MS?  Some expense and some botheration

What is the worst thing that could happen if I don't get a DMD and I DO have MS?  The MS can progress and leave me with irreversible disability.

One can't weigh a risk without looking at both sides.

John - I understand that you are in a position where you still have hope that whatever this is, it is not MS.  The diagnosis of MS is one of exclusion.  You look for 2 or more attacks, 2 or more abnormalities on neuro exam that show there are lesions in the Central Nervous System and you rule out all other reasonable possibilities.  Once that is done if what is left is MS - you are at a diagnosis.  If there is data missing, then you keep watching and waiting until the confidence level is high enough to treat presumptively.  Generally that is felt to be 80% or higher.  Since there is NO attack, lesion or MRI finding that PROVES MS, then 90% is about the highest you see for a definite diagnosis.

I'm going to bump up a thread on the CIS.

Quix

Quix
Helpful - 0
1207048 tn?1282174304
Thank you all! It helps to know what I'm feeling is normal :-)

John & lifeizgood- I do have "multiple" brain lesions on my MRI, but they were very subtle, to the point where they could not really be counted, hence my "normal" result. I am due for another MRI next month. But, my neuro thinks that I have lesion(s) in my dorsal column (spine) which can be very difficult to see on MRI. His thought is that I fulfill the requirements for CIS to justify using DMD.

At this point I weighed the 20% chance that this is not MS against what would happen if this *is* MS and I do not try to slow the progression while I am still early in the disease (before my symptoms have more of an impact on my quality of life). I decided to go with the DMDs.

I like the way Bob explained it: you may never get a better answer than 80% probability. :-(
~Jess
Helpful - 0
1453990 tn?1329231426
In terms of MS, 80% may be the best you ever get.  There are still arguments among the "experts" (ex = Has Been Spurt = Drip under pressure) as to whether PPMS and RRMS are the same disease or two very different disease processes.  Most of the lab tests for other diseases have a "Sensitivity" and a "Specificity."

For example:The original Monospot Test for EBV has a sensitivity on 77% and a specificity of 92%.  Sensitivity is the percentage of positives correctly identified and sensitivity is the percentage of negatives correctly identified.

In this case, 23% of people with mononucleosis will be sent away being told their test was negative.  There are no sure things out there.  And my math say that being 80% sure it is MS is a higher percentage than the MonoSpot test's sensitivity.  

This is the danger of having a background in Biomedical Engineering.  We actually understand that test results have built in error.   Everything is considered calibrated as long as you are within 2 standard deviations of the control samples.  Result are more "within this range."  They are not "a hard and fast number.

Bob
Helpful - 0
Avatar universal
I'm undiagnosed and have had 2 normal MRI's .  

I don't know what other symptoms your Neurologist found that made him confident enough to make a diagnosis despite normal MRI and LP.  I suspect the symptoms must have been very convincing.  On the other hand.  Would it hurt to keep looking for other reasons?  If the Drs. haven't exhausted all other avenues, then should they have just settled on MS?  Why not try another MRI?  

As I said, I'm undiagnosed and to some degree that brings me some comfort.  It may be denial, but for me no dx means there is still hope.

Your case seems to be in stark contrast to many others who have multiple lesions and symptoms but still can't get their Docs to commit to a diagnosis.  As I mentioned earlier, it may be that your symptoms were very compelling.  If not, then I would certainly be asking for more tests to back up the diagnosis.

But then I know next to nothing about this disease so you don't need to listen to me.
Helpful - 0
400099 tn?1282954864
I don't know, but maybe it's just our natural defenses coming into play. Before my last exacerbation, I felt pretty good. I was swimming 3 x a week, lost a bunch of weight, and I myself, even with classic brain lesions, firm dx thought...maybe they missed something. Then bam...exacerbation. I think all of us who are dx'd would like to feel good and have a dr say, "oops-you don't really have MS".  But, on the other hand for me, when I got the dx, it actually was a relief. After the many years my extended family joked about me being a hypochondriac I actually thought maybe it was all in my mind and to find out it wasn't, was such a tremendous relief.
Helpful - 0
634733 tn?1316625992
me too, I asked my MS Nurse about this and the neuro-psych I still see as I constantly doubt it. I think with me as I had intermittent sx over 20 years before dx it has been very difficult to accept.

It seems it is very normal to doubt the dx, I have seen my MRI's but in spite of that I still doubt, I have had ON twice and still doubt, I can barely walk 200 yds and yet I still doubt.

Like you when I have a relatively good week I doubt it even more and then something happens which exhausts me in a flash and the internal vibrations start, the eyes start to go, the pains begin and the spasms in my leg return and it's back again.

I heard that you can have very long periods of feeling ok as this illness is so unpredictable. It can take months to get over a relapse and so it makes sense that you can have months feeling well.

When I look back over the 20 years before dx it is evident to me that I have had periods of 3-4 years when I have felt well when I was in my late 30's to early 40's.

You are not alone and it is only a problem if it stops you looking after yourself.

I hope you feel ok for quite sometime.

(((hugs)))
Pat
Helpful - 0
572651 tn?1530999357
Jess,
Yes.

I still want to say some days that this is not MS.  I don't feel bad, why am I taking all these pills and doing those darn shot?  Then I remind myself it is probably because of those pills and shots that I feel ok.  

I would doubt it even more often if I didn't have classis MRI lesions and neuro results.  They keep me grounded in the reality.

good luck in wrestling with those voices - we have probably all been there with the doubts.

be well, Lulu
Helpful - 0
1453990 tn?1329231426
Sure.  Acceptance is the last step in the grief a process.  That whole Elizabeth Kubler Ross Model:  Denial, Anger, Bargaining, Depression, & Acceptance.  It is a different kind of "death."  I think the younger you are the harder it is.  Two years ago I could hike all over San Francisco with a 50 pound back pack.  We just got back from the UK and after 4 hours, I had to take a nap and get off my feet.  My active life died (maybe temporarily,) but it's gone.  I'm pissed...and I'm not even diagnosed beyond demyelinating disease.  I'd strike a deal in a heartbeat to be back hiking hills.  I have no idea what is coming, but I expect I'll have to figure out how to live with it.

I think you are headed down a similar road.  

Bob
Helpful - 0
338416 tn?1420045702
Sounds like you're learning to accept it to me!  I didn't have a choice - whether I wanted to or not, I couldn't do stuff that I used to do.  I was pretty sure I had MS - or something, and we'd eliminated the other possibilities, which were worse.

Hey, just because your daughter has long curly hair doesn't mean she likes having it brushed - I had long hair that tangled easily, and Mom got tired of me crying.  So she cut it off, and I was perfectly happy.
Helpful - 0
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