Could this be MS...anxeity...or what? Looking for help in Sask Canada!

[Renegade44]

Hi all. In june 2009 I had slight numbness in my right leg and slight slurred speech. I was found to be B12 deficient. In march of this yr I had left hand tip of finger numbness that lasted for a bout a week. The neuro doc who seen me in 2009 said it was def MS because it was 2nd instance and that I had to start MS drugs. Im very confused and scared. I also have had parastetia that comes behind my right knee and only when i think about it. When im walking or working all is good but as soon as  I think about it i get a zinger....what are your thoughts...is this MS, anxeity or what else>?I do have huge anxeity issues, I worry about everything and struggle with that daily. Im gonna start the MS drugs but wonder if I really should?

[jujuminx]

You will find the anxiety diminishes as you begin adjusting to your new reality.  My dr did give me sleeping pills to help when I was on steroids. I didn't need them for that, but have taken two in the last 6 months when I indeed had trouble sleeping due to anxiety.

Try and find natural ways to relieve your stress.  Most of us find exercise, meditation/prayer and having some down time helps us cope with the normal stresses in life.

Physically having MS can be somewhat like a roller coaster, not knowing when or how our bodies will be effected the next time we have an attack.  Emotionally it can be the same way.  

Give yourself some time. Allow yourself to grieve and embrace the uncertainty of your dx.  You will begin to feel better, then you may, but don't fear, you will bounce back again.

It's okay to take this serious, it is serious, just try and take it one moment at a time and eventually you will find that you are not thinking about it all the time.

Julie

[Renegade44]

Thank you to the last 3 commenters. I know I can do this, I wish I didnt take things so seriously but that is why Ive been so successful in my life. Im on top of the world right now and MS is pushing me over. I will keep you apprised of my situation. I wish you well with Rebif, hoping to start mine in 2 weeks or so. Do any of you take anything to get rid of the anxeity?

[lilbit1986]

Hi Renegade44, I am new to this forum and am finding it very helpful and enlightening. I was dx in 97 with Proable MS, which meant to me, "no MS". My initial symptom was me going numb on the left side of my body for about 8 week. One day I woke up and it was gone. At that time I had one lesion on my spine & that was my first excerbation. After that I felt fine. I did have mild tingling in my left leg & mild numding every now & then, but that was it. I had basically put MS out of my mind until recently. While I did not go numb again, I began experiencing more intense tingling, very sharp stabbing pains, and what I think is the MS hug. I decided to visit my nuerologist, whom I haven't seen since '05, and he ran all the tests (except spinal tap because I had one in 97). My MRI showed two new lesions on my brain so now I have three :(  I will be starting Rebif soon as well. While I undersdtand you anxiety, if you are feeling unsure, speak to a MS specialist or another neuro and TRY to relax a little. I KNOW that is hard with all the uncertainity facing you but because MS mimics so many other diseases, you want to be as sure as possible.

I'm still learning a lot about MS also. I am BELIEVING that where I am at today is where I'm going to be 30 years from now.

[Lulu54]

hi and welcome,
your voice sounds full of anxiety about this diagnosis, which is understandable.  The concerns about family and work are normal, whether we are running a lemonade stand or a multi-million dollar business.  We all want to know what the future will hold for us living with this MySterious disease - if only it were that simple.

Your doctor has recommended you start Rebif and you can take our word for it, you can get accustomed to the needles and the inconvenience.  

The good news is MS is not the same future that it was 20 years ago.  These drugs change the odds heavily in our favor that we can live a fairly normal life.  We will live as long at non-MS patients.


Over 80% of us on therapy will not need any devices to help us walk- not even a cane.

There are a slew of new drugs being studied that may someday help all of us stop injections and even maybe be a cure.

Learn all you can about MS - you might want to start with our health pages.  But my warning is to learn just a little bit at a time.  It can overwhelm you if you try to understand eveyrthing at once.

You can access the health page index at

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Information-and-Resources-Index/show/22?cid=36


This disease continues to stump everyone - the experts and the patients.  Welcome to the club.  It's hard to live with all the questions but eventually you will make peace with it and find a way to move on with living.

see you around,
Lulu

[jujuminx]

Not having sx is great!  I don't either but I don't let that fool me into thinking that I still don't have MS or that my sx free life can't change.

You will get use to the needles. I am beginning my 8th month of copaxone.  Use to be deathly afraid of needles. Don't even blink at them now.  Important thing is to do everything you can to keep the relapses away and stay sx free.

Julie

[Renegade44]

I will be starting Rebif in 2 weeks. Not looking forward to the needles but have to get on with my life. I have a great support system at home and work and will need that to carry on. I hope i can get through this because it doesnt seem to be getting any easier...and i dont even have any symptons right now!

[jujuminx]

Hi, we haven't met yet. Welcome to the forum. So sorry you are having difficulty w your possible MS dx.

If you haven't done so, please read the "Health Pages" to the right of your screen on this forum.  Click on the "Diagnosing MS.." It will explain to you a lot about MS including the "space and time" reference Bob noted.  Basically a neurologist is looking for an attack that effects at least two different parts of your body (space) and those attacks are distinct from one another, having been separated by 30 days or more (time).

What drug is your dr putting you on?  Most dr's are reluctant to dx MS and it is a dx that is more often than not a dx of elimination. In other words, there should be a lot of other things your dr is looking for and ruling out before dx'ing you with MS.

There is really no such thing as benign MS b/c one doesn't know if your sx will progress and worsten until they do. You might be fine for 10 yrs then you have an attack that produces sx that never go away.  Whoops, the dr was wrong about the "benign" part. So, that is why it's important to take dmd's that slow the progression and lessen the severity of your attacks.

I think it was Bob who said that the only way to definitively dx MS is through an autopsy.  Most people (85%?) dx with RRMS, which is the remitting relapsing kind where the sx come and go. Problem is that the majority of those will eventually progress into the secondary type of MS.  None of us know which percentage we will be in so that is why it's important take a MS dx seriously and get treatment for it.

Keep reading and keep coming here.  Ask your dr questions, you are your own best advocate.  Good luck!

Julie

[Renegade44]

What do u mean dissemination in Space and Time? I havent had anything ruled out. Neuro just said 2 episodes must be MS. Lets start the drugs so it slows it down....Im frustrated scared and havent been this upset in my life! I thank you for all of your replies!

he said carry on life andsince your first 2 attacks were sensory you might have a benign MS...what does that mean?

[COBOB]

I'd say that you should see an MS specialist.  It sounds like you meet "dissemination in Space and Time," but I'm not sure if they have ruled out all the mimics (like Lyme's, etc.)

Bob

[Renegade44]

So does my MRI look like MS to you or could it be something else?

[COBOB]

No, I;m not saying that.  If you had a few T2 hyperintensities on an MRI, the docs want to see more or new GAD enhancing lesions.  If you had GAD enhancing lesions, that would indicate a lesion that became visible (gone "active") in about the last 40 days.  GAD  only shows on T1 sequences the new lesions seen on T2 and FLAIR sequences.

The problem with the term active lesion, is that there are many MS lesions that may be causing damage and symptoms, that never show up on MRI, so there are active invisible lesions.  

Bob

[Renegade44]

Cobob, I don't understand ur post. Are you saying that I have active lesions?

[COBOB]

GAD enhancement is more about "age" than activity.  It means that the area of enhancement has formed in about the last 40 days (an "active" lesion.)  The truth is that there are other tests and studies that show that the myelin in that are may have been under attack for much longer.  The GAD enhancement shows that the endothelium of the blood vessels (the Blood Brain Barrier) is leaking and allowing the GAD to escape the blood vessels into the cerebral tissue.

Bob

[Wobbly]

dont forget to read up on the Health Pages, they will answer alot of your questions, the Health pages are information we got from the friend here on the forum.  Alot of different advice as well.

let us know how your are feeling and keep a record of your symptom.  A timeline to say how long you have had the symptom and other information.

it took me quite a few years to get a Dx.  I'm in canada as well, and it can take awhile to see a specialist or get tests done.  I know.
take care
wobbly

[JemmAus]

Ischemic relates to blood vessels, vascular stuff etc. So lesions from that can be from tiny bleeds from migraines etc. I think......

You are certainly not alone. I have had 3 brain MRIs and each has been interpreted by different radiologists and each radiologist says something differnt. Frankly unless it something blatantly obvious like a huge stroke or a cancerous tumour I reckon half of what they say is speculation (my opinion, don't take THAT to heart!)

Not having lesions in the corpus callosum, from what I;'e learned from here, certainly does NOT exclude MS. Lesions can be in 'typical' places, or atypical.

if the lesions don't enhance with gadolinium it just means they aren't active at the time.

i guess your neuro was satisfied from the MRIs and whatever tests he did to declare it to be MS.

Remember, you don't HAVE to take a DMD or any other drug, It's entirely your choice. I totally understand abot the anxiety issues. My great horror personally is taking drugs, thanks to some awful reactions (seizures etc) in the past. This sure doesn't help me in any available treatment!

Here's hoping someone else can give you better insight than I can.......cheers

[Renegade44]

I have notr had any lumbar punctures. He is using the 2 episodes as "proof". Im not saying i dont believe him because my wife actually worked for him and he is a family friend but I guess I want to exert all options and opinions before I accept my fate. I have good days and bad days as far as accepting MS as we are kind of on top of the world right now.I run an 8 million dollar a yr retail store, my 2 teens are close to graduating, our finances are in order and we just finished building our dream house on a golf course. Do I want MS...no....no one does, but if i have it I will accept it and do whats right...but do I have it?So far heat doesnt bother me, i dont have fatigue(other then normal). I am overweight but losing(18 lbs so far).I have made a committment to lose the belly. I am usually a joking, bubbly personality and i find that I have been depressed,scared and anxious. Also, since my first 2 episodes are sensory and almost 2 yrs apart is that "good sign" that I might not have it bad if i indeed do have it? Should i start the drugs? Sorry for all of the questions...but id just like some answers!

[Wobbly]

Hi there.  I'm not a Dr so I can't answer your question for sure... but that one radiologist doesn't sound correct to me.

Have you check out our "Health Pages" they are up in the right hand side of this page.  They have alot of information for you to look at.  

have you had a Spine MRI.  your next testing should included one.  I think you need for testing to rule things out.  Blood tests etc.  

let us know how things go.  
wobbly

[Renegade44]

I have had 2 mri's.Here is what they say from the actual radiologist report. Here is what my first mri says:

There are a few T2 hyperintensities involving the periventricular and subcortial white matter of the cerebral hemisphere bilaterally. There are no hyperintensities seen to involve the corpus callosum or infratentorially. At this point the appearance is non specific and a definite diagnosis of MS can not be made as the appearance may realte to changes in ischemic demyelination(what does this mean??)


Here is the followup: There continue to be bilateral periventricular and subcortail white matter hyperintensities, again suspicious but not definite for underlying demylenation from MS. The appearance has not signifcantly changed since previous mri. There are no areas of pathological contrast enhancement following IV gadolinium administration. Again there are no lesions within the corpus callosum or posterior fossa.

One radiologist told me that if there are no lesions in the corpus callosum or posterior fossa that you cant have MS...is that true?

[JemmAus]

Hi, have you had any further testing? MRIs of your head and spine? An LP (lumbar puncture)? There's a myriad of tests for MS, and a myriad of diseases that can resemble MS.

As to the straight jacket, I know how you feel. I frequently think i am just panicking and completely mental!

[Renegade44]

Id also like to say that otherwise I am a healthy 42 yr old male married for 18 yrs with 2 teen boys. Im just wondering if im going out of my mind with this right knee thing.It happens no where else.My wife suggested that i make it happen by thinking about it. The neuro said that usually ms things will move around and not be located to just one spot...Do I need to call the men with the straigh jackets lol?