Denial or really MS???

[YayaMommie]

During the course of being critically ill I went through a number of procedures.  I survived the infection and I'm still recovering (will take a year.)   Many times the doctors found things that they said looked like MS.  But the were busy saving my life and I agreed with the priority. :)

So... They found lesions in my brain.  "Quite punched out" and in locations typical of MS.   Then when they did a LP and ran it looking for something else it came back with 10 o-bands.  (12 in CSF and 2 in blood.).  Nothing they were looking for related to the infection showed up.

Finally was well enough to see a neuro who did an exam, looked at my MRI and was pretty upset that over 6 months had passed without a follow up MRI.  So I do that in a few days and see the neuro a few days later.  

I know that a lot of you have expressed frustration in not getting diagnosed.  I've experienced that in other things, but this is not at all what I have ever expected.  It's extremely scary - especially since there's so much consensus and the MS doc is certain and I was arguing that I think I don't have it and they are certain I do.

All these symptoms are (and have been for years by docs) explained by something else.  Most are mild, but one freaks me out.

The followng things I think are just happening for various reasons:

1.  Tremor in right hand that comes and goes - but could be the side effect of one of my meds
2.  Electric shooting - again I think side effect of anti depressant I no longer take - cymbalta- so it has decreased but still comes at times
3.  Bowel difficulty - like it doesn't want to work - like I can't make the muscles work - weird but I have a bulging disc in my back and it showed up soon after a cortisone shot to my spine for lower back pain so I thouhg it was that.  Lasted about 4 months
4.  Severe constipation (like I carry medical gloves everywhere because I have to help things - sorry it's so gross and embarrassing). But im taking an iron supplement for anemia so that could be it.
5.  Unexplained bladder pain and difficulty to control - was told it was interstitial cystitis and I went on a special diet and after several months it subsided so I don't think that was ms
6.  I've always been clumsy
7.  All my pains and muscle weaknesses due to permanent damage from combo of difficult preg years ago and Old spine injury and current bulging discs,

The thing that freaks me out the most - and I actually asked a doc to test me for early onset Alzheimer's 2 years ago - is short term memory problems,   I can't remember what I just said.  I can't remember the second half of a sentence I start.  I can be giving a lecture and look down and have no clue what I just said.  Short term memory fail big time,  scares me to death.  And difficulty with critical thinkigntasks that used to be easy for me.  Until now every doctor said it was stress - so maybe it is stress!

Every "symptom" has been explained away and I really am having a hard time believing that I have ms all of a sudden.  During the neuro exam she banged my knees so hard they flew up off the table.  One time she hit my right knee and it swung so hard that my left knee also reflexed.  But couldn't that be my back injury? Or just hitting me hard?

Even with obands and those weird spots on my brain, doesn't there need to be more clear symptoms?  Or am I just trying to live in denial?  I have no idea what part of the neuro exam went well or not.  

She rushed me into the MRI schedule and have a 2.5 hour one scheduled.  Yuck.  Gonna need a sedative for that.  Sigh.  

I'm scared of adding more meds to my body.  Really scared.  Also really scared of losing my working memory.  

Do you guys think that I shoukd trust the doc?  Or do your think that if you go to an ms specialist they are inclined to find ms because that's what they do all day everyday.  (I went to a top ms center in a large metro area).

I never post on places like this.  I hope some of you all have some input. Thanks.

[HVAC]

I was in denial about MS so I went to another MS Specialist who said yes you have MS. My MS was found by accident and I did not believe it. I knew so little about MS.

Alex

[YayaMommie]

Oh yeah - thanks for the mri tip.  Last one freaked me out.  Was about an hour.  I hate them.  I think I'm going to ask for sedative.  

[YayaMommie]

Thank you all very much.
Supermum you taking the time to share all of that is really helpful.  I'm still freaking out.

The symptoms I listed (1-7) are things that have come and gone over the past few years and the diagnoses I listed are all ones that were given to me by doctors.  I didn't even have an opportunity to tell all of those things to the neuro. She didn't ask and I didn't think relevant until I started reading things here.  

The one thing Ive sought help over to be dismissed is the cognitive issues - but that's the one thing the neuro said she thought I didn't have because I was very articulate and able to communicate well.  (I have a graduate degree so maybe I'm a bit sensitive to things but those "little things" freak me out the  most.)

The tremor is new - started after this awful infection.  It's intention tremor and typically appears when I go to pick up a cup of something to drink.  It's intermittent.  If it's brain damage wouldn't it be all the time?  

I'm just asking - I don't want anyone to think I am arguing with you.  I'm just being thorough and questioning to help understand.  And I admit that I'm sure im using denial mechanisms too.  

I'm so scared of adding more medication to my body.  Can you guys tell me if it's really making a difference?  Is it preventative?  Do they know if it actually prevents things?  Are they all shots?  

The medication that is saving my life is really toxic and there's a lot of things tbat are dangerous to take with it and I have to have liver function tests monthly.  No ibuprofen allowed.  Prednisone with it is deadly.  I can't take anything over the counter without asking my doctor.  The neuro didn't seem to know anything about the medication (it's from an infectious disease doc and pulmonologist) and I'm not sure she's considring how it might interfere with something.

She told me she wants to start me on medication and was rather firm about it but said she didn't know what yet until she got more info because this is a "highly unusual presentation ) which has been th story of my life the last 6 months.  I've been misdiagnosed many times the last six months while they were trying to save my life.  I had eight "ologists" working with me during my hospitalization,  felt like an episode of House MD.  My family doc told me late "you're the most interesting patient Boone hospital has seen in 6 months!  Haha and you never want to be THAT patient but it got you the best docs coming out of curiosity."   I'm thankful for that.

Thanks you guys for listening and writing.  This might become my internet home.   :)

Yep - still in denial.  Sigh.

But if one more family member tells me "it's not a big deal, don't worry about ms - it's totally manageable and no biggie anymore" I'm gonna slap them.  

[supermum_ms]

Hi and welcome to our little MS community, i am truly very sorry for the medical roller coaster ride you've been on and are still currently going through.......HUGS!

To be perfectly honest i have written probably thousands and thousands of posts relating to diagnostic anxiety, usually explaining in detail why someone's symptom list isn't on it's own suggestive of MS, basically because 99% of MS symptoms are commonly associated with many other causes and not exclusive to MS.

Often additionally explaining why MS is very unlikely, if they don't actually have any neurologically abnormal clinical results and or diagnostic evidence (eg MRI, LP, VEP etc) that is suggestive of a neurological condition like MS and or clinically meets the Mcdonald diagnostic criteria for MS.

I've probably only written a couple of posts though, in regards to someone's diagnostic anxiety being the opposite, please understand that your anxietie's focus is still on your symptom list but unfortunately, as you explain why your symptom list could be caused by x, y, x  you are also overlooking the likelihood of MS, because you actually do have some consistent and or suggestive clinical and diagnostic evidence of MS.....  

Objective diagnostic evidence:
"They found lesions in my brain.  "Quite punched out" and in locations typical of MS.   Then when they did a LP and ran it looking for something else it came back with 10 o-bands.  (12 in CSF and 2 in blood.).  Nothing they were looking for related to the infection showed up. "

Objective clinical evidence (probably incomplete):
"During the neuro exam she banged my knees so hard they flew up off the table.  One time she hit my right knee and it swung so hard that my left knee also reflexed." and "muscle weakness"

Suggestive MS symptoms and relapsing and remitting pattern:
1.  Tremor in right hand that comes and goes [Action tremor?]

2.  Electric shooting - it has decreased but still comes at times [L’Hermitte's  sign?]

3. Bowel difficulty - I can't make the muscles work - weird Lasted about 4 months [abnormal internal/external sphincter or pelvic floor muscles are
spastic?]

4.  Severe constipation [most common MS bowel complaint] see http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Bowel-Problems.pdf

5.  Unexplained bladder pain and difficulty to control - interstitial cystitis, after several months it subsided [bladder spasms, urge incontinence?]

6.  I've always been clumsy [different meanings but maybe abnormal proprioception visual/brain?]

7.  All my pains and muscle weaknesses [pain type but muscle -slowing or loss of nerve impulse conduction?]

8. short term memory problems, forgetting what was said, loosing what you were about to say and difficulty with critical thinking tasks [specifically identified MS Cognitive issues]

MS Specialists professional opinion:
"there's so much consensus and the MS doc is certain and I was arguing that I think I don't have it and they are certain I do. "

I'm really sorry but i do believe it's in your best interest to trust your MS specialising neurologist, because from my understanding of MS everything you have mentioned would be explained by one diagnosis and as much as you don't want it, MS would be at the top of your potential diagnostic list......breath!

HUGS..........JJ

[Artanis12]

Hi and welcome.  

Sounds like denial.  Understandable, but still denial. Right off the bat I would say that if a neuro at a top MS center says you have MS, you can be pretty darn sure you have MS. The fact that you even got IN to a MS center so quickly, is telling. Getting a slot in one of those can be incredibly difficult.  They are actually not in the business of seeing MS under every rock, and are pretty chary in handing out that diagnosis. And yes, the consensus does count for adding weight to the diagnosis.

The raft of tests you had done (bloodwork and LP) are part of the "ruling out other stuff" process a neuro would likely have done if you had only been in for something non-life-threatening, like any one of your neurological symptoms. It sounds as if you were in a rather unique situation where all the correct tests were given for other reasons. In your case, with lesions in the proper areas, the large number of non-matching O-bands, and the large number of neurological symptoms, MS can explain almost all of them.

You have to remember, most of us go misdiagnosed for years, with each symptom addressed separately and in a seeming vacuum. Each one is explained away by this or that doc, and later you find out just how wrong they really were.  That is because of several factors, but the primary one IMO, is that most of us go in with a single symptom we might be having at the time, when in reality, it is part of a totality of symptoms that WE are not connecting any more than the docs can, especially with many of them not bothering to take adequate time to get the whole picture.   I would trust the docs on this one, I really would.

I would say this also, as someone who was diagnosed late - basically at age 52 - don't believe it if someone tells you you're too old for MS.  Unfortunately, it can happen at any age, it's just less common after 40, that's all.  

On your long MRI, which sounds like a full spinal - a few pointers from my own experience:  try to NOT drink a bunch beforehand.  You should be able to get up at certain stopping points in the process, but only then and they really prefer not.  Afterward of course, you will need plenty of water to flush the contrast from your system ASAP. You'll make it through, I promise. At some point you may even become such an old hand you start falling asleep in the tube. ;-)

So welcome to the club. I know membership stinks, but it's a nice group here at least.

Karen

[essdipity]

Sorry, new kind of keyboard for me.

But as I was saying, hundreds here have gone through multiple doctors before getting the final verdict. It's a long story, but trust me, this is not an easy illness to identify. I hope you will stick around and continue to post. There's lots of collective wisdom on this forum.

ess