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.

[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.