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.

[kwarendorf]

RE Side effects: I have none, to anything. Not IVSM, not Tysabri, not Rituxan, not Lyrica, not Elavil, not Nuthin' :-)

Try to limit your side effect expectations. As ess said they are completely individual.

Kyle

[essdipity]

Regarding MS treatment drugs' side effects, it's not true that one type will produce more than another. This strictly depends on individual reactions, which can be negligible to crappy. I turned out to be allergic to Copaxone (shot), and did pretty well on Avonex (shot), though I had to manage the side effects carefully (flu-like symptoms, at times severe. Only once a week, though).

The only advantage that shots have over pills is a longer track record. In the past, pills weren't possible because the digestive process destroyed the active ingreds. I feel pretty confident about Tecfidera, given that the same basic med has been used for more than 20 years in Germany for psoriasis.

Not trying to talk you into or out of any treatment approach. You should discuss this thoroughly with your neuro. Also keep in mind that should one not be effective or produce bad side effects, there are now lots of others out there. People switch all the time.

ess

[YayaMommie]

Thank you for sharing that!

[Artanis12]

OK, maybe I imagined it.  The "punched out" bit.  Maybe I have a few holes in MY head.  Sheesh. Still a fab piece tho.

Why can't we edit our posts here, I wonder?  Grrr.

[Artanis12]

I suspect what they are describing as "punched out" lesions are actually a type of "hole" that can occur in MS.  In fact, Quix (a long awol but much esteemed member of this community) mentions the phrase "punched out" in her informational post on lesions.  It is most worth your time.

http://www.medhelp.org/tags/health_page/7687/Multiple-Sclerosis/Lesions-Lesions-Lesions?hp_id=762

And I'm so sorry this is happening to you, truly. I feel ya on the "aren't I too old for this crap??" bit, since I was only 3 weeks shy of 52 at dx.  Unfortunately, we aren't too old.  Yippee us, huh?

[YayaMommie]

Thanks for the info.  I read that there's less side effects and that the older meds (which are shots so far as I can find) so I'd rather have the least impact on my body if possible. I've had doctors in other areas offer me a med instead of a nutrition plan because it's easier.  I'm glad I did the food plan.  (Not ms related).  I don't want the easy route unless it's the best route.

And just to share info - the term "punched out" is in my medical records from the radiologist report and the neurologist report.  The neuro added "quite".  Then when I saw MS doctor she showed me one of the punched out lesions and said "you even have some punched out lesions like this one here."  I said "what does that mean?"  She said, "it means MS especially in that location and if you look here you can see that it's punched out."  

Then she said something about water and dead space and all I heard is now foggy in my memory.  I don't understand the significance of punched out still. I'm just trying to understand.  

And also the reports state there are lesions that appear old and quite old.  I don't know how they can tell that. It's something they see on the MRI.  I'm probably spending too much time reading all my reports.  I have them because they were given to me to take to Mayo for another illness so I have every note and report and doctor progress notes etc.  

I just found another CSF lab report showing an elevated IgG index and my MS neuro I just saw doesn't even know that yet.  So I guess she's right.... Just one confirmation after another.  I turn 50 in a few days.  This is like the world's suckiest birthday present ever.  In fact all my birthday plans are gone because I have no money to even go for one night to a hotel let alone a vacation due medical bills.  And the literal icing on the cake is that I'm scheduled now to spend my actual birthday day at Mayo all day!   Sorry I'm venting.  I'm pissed and I'm in tears and I don't like this.  Aren't I too old to get MS?  

You know I just survived a 50/50 Prognosis from three simultaneous rare infections that only one in 100,000 people get. And usually those ones have Aids and I don't have aids (thankfully).  Why can't I win the lottery with these odds?  Now this?!

"Oh you and your family went to the Caribbean for your 50th?  Cool. Oh me? For my birthday?  Oh, I got MS!  Woohoo!"

[essdipity]

I've never heard of punched out lesions, and this is not standard mri jargon. I think you'll have to confer with your neuro on this one.

Yes, the shots are self-administered, how often depending on the type. Some are deep, some are shallow. All have side effects of some sort for nearly everyone. If you go the shot route, the drug company sends a nurse to your home to show you, and they bombard you with written materials.

Meds in pill form have been available for 2 or 3 years now. I'm on Tecfidera, which caused me gastro issues to begin with but once I adjusted I had no further side effects of any kind. Frankly I can't imagine why anyone would pick shots if they don't have to, but that's just me. I switched as soon as I could.

I think you should spend time on the website of the Nat'l MS Society, which has info on the drugs and a great deal more. Of course this forum is great(!), but there's nothing like official medical sites. Read up as much as you can, but beware of weird and crazy stuff you'll find on the web, as I'm sure you already know. That's why I advise people to stick to the NMSS, good hospital and research sites and the like.

ess

[kwarendorf]

Telling old from very old lesions is difficult, and kind of unimportant. Only a long history of MRI will give you that kind of data. The real key is identifying new lesions. It's also much easier :-) In subsequent MRI, done with contrast, the new ones light up (enhance). Identifying new lesions is one way they guage progression.

I cana't help with the shots, as I've never taken an injectable DMD. My first was Tysabri which is administered by monthly IV infusion. Now I get Rituxan, which is also given via infusion. There are now a few oral DMD's like  Tecidera, Gilenya and Aubagio you should discuss with your neuro.

Kyle

[YayaMommie]

What are the shots like with the DMDs?   Do you give them to yourself like people on insulin?

[YayaMommie]

Thank you.  I know there's lots of people on here who are trying to get diagnosed and having a hard time trying to convince their doc.  I don't want to offend them with my opposite sounding comments and questions. :)

What are "quite punched out" lesions?  How do the doctors know if it's "very old?"   I know the difference between active MS flare ups showing on the MRI  but how do they know if something is old or very old?  And what does "punched out" indicate?

[kwarendorf]

The biggest benefit is that you can start DMD treatment. Disease Modifying Drugs (DMD) can help keep MS from progressing.

MS is a progressive disease. It progresses faster in some than in others, but it progresses. There are 12 or 15 different DMDs available today, which makes it easier to find one thaaat will work for you.

MS often effects bladder, bowel and sexual function. We discuss all openly and are not easily offended :-)

Kyle

[YayaMommie]

Thank you all for the advice. It is more helpful than you know.  

I'm just really curious and don't mean to offend anyone.  But.... What are the benefits to being diagnosed?  I'm having a hard time figuring that out.  

[kwarendorf]

Hi BDG -

If it swims like a duck, and waddles like a duck, and quacks like a duck, chances are...

I spent 20 years seeking diagnosis and treatment for a few chronic ailments. It never dawned on me nor, to the chagrin of my MS doc, to my treating MD's that there may have been a common cause. Guess what? There was! And it's MS!

As it can be very convenient to point random symptoms to MS, it can be equally convenient to point MS symptoms to random causes. I would advise against the latter. FOr me the risk reward profile is out of whack :-)

Kyle

[supermum_ms]

We're always happy to explain as much or as little as you need, so never ever worry about needing more information and asking a trillion questions...

Neuro-psych evals actually vary but are basically quite similar in nature, depending on the specific assessment your going to have, will depend on how in-depth the testing and how long it takes. It's pretty common to have a standard IQ test initially, which takes up to 2 hours but each sub-set is measuring different cognitive skills eg working memory -short and long, verbal comprehension, executing function, auditory processing etc etc.

Some sub-sets have a response time aspect but which ones are timed will not be obvious and you shouldn't have a clue how your going throughout the testing, basically because you are not suppose to. Behavioural observations are also being recorded, eg if you get anxious, frustrated, angry, panic etc when you can't do something, btw it's 100% normal to not be able to do something's, so don't stress and over think things...

They basically observe emotional response and behaviours because certain psychological issues can influence your cognitive skills, as do medications etc Depending on if there are abnormalities and the severity of the cognitive issue(s), more in-depth testing 'maybe' required but scheduled at a later date.

Keep in mind that you can score within normal range but because you believe your struggling in a specific cognitive area, anxiety can be make you incorrectly believe you're worse than you truly are, and when your anxious it can actually make an issue worse eg performance anxiety, speech impediment, memory etc.

So yes you could be overly 'sensitive' and knowing how to reduce your anxiety, utilising self help tips and tricks etc will definitely help but IF these cognitive issues are MS related, it's entirely possible "to be articulate and communicate well" and still have other issues negatively effecting your cognition at other times eg fatigue- physical and or mental, heat intolerance (Uhthoff's phenomenon), medication etc  

Hope that helps and not confuses :D

Cheers..........JJ

[YayaMommie]

Thank you so much Alex.  That really helps.

[HVAC]

Copaxone, Rebif, Avonex, and Betaseron are all injectable they are safe and have been around. Tysabri is an infusion and is used on more advanced cases because it has more risk. Tecfidera and Gileyna are pills and newer they have more risks than the injectables but work a little better. They do not exactly know about long term effects of Gileyna and Tecfidera becasue people have not been on them for long times yet. My Doctors uses the CRABs first, then Tysabri or Gileyna and Tecfidera.

They all have3 side effects but not everyone gets the side effects. It is all benefit vs risk. As MS gets worse you take more risks.

Alex

[YayaMommie]

Thanks to all of you.

Any advice as far as medication?  I know I will rely on my doctor - just wondering your experiences.  

Anyone had a neuropsychologist eval?   What do they do?

[Artanis12]

You poor thing! It sounds like you've already been through quite a wringer! How nice to feel like a bug under glass, huh?  I sometimes feel like I have a cone of odds-beating around me.  Diagnosed with MS at 52?  WT...??  I'd much rather it manifest as something lottery related....

Yes, definitely get all the relaxation/sedation the market and your potential drug interactions will allow.  I know I said I almost fall asleep, but a 2-hour MRI is wearing, there is just no way around that. :(  But being relaxed and a bit woozed out will definitely help. I also have them tune the radio to NPR - they do in-depth stuff and I have much motivation to listen with great attention.  It makes the time go faster.

And just FYI - as for tests and symptoms and do you really need more, I was diagnosed very quickly, after a "mere" 3 brain lesions (up to 6 now. yippee-skippee.), unremarkable bloodwork, 8 O-bands, clean spine, and less of a history of symptoms than you apparently have. So again, your dx sounds very solid.

Do keep us posted.  And I'm hoping for an anxiety-free MRI for you.  :)

Karen

[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