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]

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