I don't know how to cope with the uncertainty... Any suggestions

I have been told by my Neurologist many times that he doesn't believe I have MS. I have had several MRIs since 2003 with no changes. But on my 1st brain MRI numerous tiny punctuate T2 hyperintensity white spots were identified. I have since had a spinal tap a few weeks back and it was negative for O bands. All other labs on CSF were normal. However, it did show West Nile IGG antibodies (meaning it was an old acute illness). My Neuro now believes that is what explains the non specific white spot findings on my brain MRI. My neck and spine MRIs have all been clear. These were performed on a 1.5 magnet. Since having my 2nd child in May 2008 I have been dizzy (22 mos straight) with slight fuzzy vision at times. I have been to several specialists and all are pretty baffled. A neuro-otologist did discover absent VEMPs in both ears. He really can't explain if that is the cause or if it was congenital. This is sometimes found in MS patients. Also, my Neuro ophthamologist found I had an abnormal Visual Field Test which could indicate a dyemilineating condition. The fact I had West Nile in 03 and then these symptoms (Dizziness & Vision issues) popping up in 08 & 10 can't be explained. My Neuro believes it isn't tied to West Nile b/c that isn't a progressive condition. I am know wondering if this virus might have led to me developing MS. After the birth of my 3rd child in January (3 months ago), I have had some numbness/sticky/cold sensations around my mouth, chin and left eye. Again, my Neuro can't explain why I had these new symptoms after childbirth. My dizziness and blurred vision remain. Everything is worse with stress/anxiety and raising 3 children (including a newborn) really has me run down. Plus the constant worrying about my health has me in a really bad place. I want to believe my Neurologist when he says he really doesn't feel this is MS b/c I haven't had any of the major symptoms (Optic Neuritis, Limb Numbness/Weakness, Gait problems, bladder issues, stable MRI, etc etc) for almost 7 years. I really can't get a break from my anxiety. And it is really getting the best of me. I feel like I have trouble finding words, slurring occasionally, but I have a feeling this is all from anxiety. I worry every second of every day and I hate to worry my life away. Right now, I am so lucky... I am still able to care for my kiddos, drive and do everything I need to do to care for my family (even though I am tired and have low patience from constantly fighting the dizziness). I keep telling myself to not borrow trouble and worry about the future, but I am having a ton of trouble accomplishing this. I am nursing my 3 month old, so I can't try any meds to help with anxiety or dizziness. Does anyone have any recommendations for me on how to handle the unknown and hanging in limbo? Also, any hope this is just all related to an old virus (West Nile) and stress is triggering some problems from those old deficits? I am a 34 year old Mom of 3 praying she can see her little ones grow up and be the Mom they deserve. Thanks for taking the time to share your thoughts!

[JemmAus]

Hi, I am useless at providing information but wanted to say, (because I expect you re glued to the computer awaiting a response) that I understand where you are coming from. I too am un-diagnosed at this point, and depsite my "extensive" number of lesions the jury is still out. I worry as well. Sometimes I think my symptoms are from worry, but then they will hit when I am perfectly content and not thinking about it. But then the worry re-occurs and it can become a vicious cycle.....

Anyway, for me personally all I can do is KNOW that it's NOT my vivid imagination!

Good luck. i'm sure the other members will give some good advice!

[tonyad]

  Hi Lara,

    I do not think that we have met yet. I do want to say to you that you do have several things going on and I can totally relate!  As a mother of (5) children, I know that in and of itself is a big undertaking especially if you are the primary caregiver if hubby is working,

     Anxiety can be a very debilitating issue to deal with as you well know. Also, w/ just having a new little one and nursing.........hormones are running rapid in your body!
When you are having anxiety to the degree that you are...your flight or fight flag is always up and "On Guard" leaving you tapped out of all (or most) of the normal emotional responses that one would have in different circumstances....I hope I am making since thus far.
        
      In other words..mny times anxiety is normal and a part of human living but if it is more than the normal level it affects our daily activities and then it becomes a disorder. Normal anxiety is a protective response. Anxiety affects the body both physically and mentally. Severe anxiety can cause depression, disturbance in relationships, tension and the person may remain in the constant state of worry.

      Now, with all that being said, that is not to say that you ARE having some true Neuro issues and some other things but when these things arise..As you had said yourself, you get overly Anxious about it.

     You worry a lot about your health and I think that this falls in to a category of being a young mommy of (3)little ones and thstress that goes w/  being responsible for these little ones.AND..That you have such love for them that you do not want anything to happen to neither you nor them. This is part of the anxiety domino affect.

     Perhaps you subconsciously think that if you “worry enough,” you can prevent bad things from happening. But the fact is worrying can affect your body in ways that may surprise you. When worrying becomes excessive, it can lead to feelings of high anxiety and even cause you to be physically ill.

     With excessive worrying, your mind and body go into overdrive as you constantly focus on “what might happen.”  Many chronic worriers tell of feeling a sense of impending doom or unrealistic fears that only increase their worries.  Excessive worry or ongoing fear or anxiety is harmful when it becomes so irrational that you can’t focus on reality or think clearly. People with high anxiety have difficulty shaking their worries. When that happens, they may experience actual physical symptoms.

       Do you any family members or close friends that can help you out a little w/ housework, kids, or even babysitting for a couple of hours. you do not even have to leave the house. You can simply go in to your room take a nice hot bubble bath, turn on some music, curl up in bed w/ a good book and a nice hot cup of Herbal Tea.....There are some you can drink even though you are nursing.

        I thnink that it woyld be a GREAT idea for you to talk w/ someone (professional) because of the extent of your anxiety that you are having.  After you get a hold and understanding of that then perhaps (if needed) you can re - visit your Neuro sx w/ a Neurologist.

        I wish you well. And not to worry, everything will be ok and work out for you. The best start is to get the Anxiety under control.

Big Hugs to You,
~Tonya
ps, please excuse my spelling errors as I am having
one of those days. I scanned over my post and there
are to many to even begin to fix....Lol

      


      

[supermum_ms]

First let me just warn you, you might not get very many responses due to your post being in one big block, a lot of our members have sight issues and would find it difficult to read, Please dont take it personally if you dont get many. ;-)

First i think you need to deal with your anxiety, not surprising after just having a new baby, so go see your GP, there are things you can do that dont include drug therapy, its worth having a chat about how your feeling. Your peace of mind is priceless!

At this time there is no known virus that causes MS, though infections or viruses can cause a relapse if you have MS. It is very common for women with MS to have relapses soon after giving birth, gestation suppresses the immune system and things can go haywire soon after birth. Please note i'm not saying you do have MS! You dont mention if you've had all the MS mimics ruled out. eg Lupus, Lyme etc, have you been tested fully?

About the dizzy/vertigo there are a few things that can help if its from the inner ear and not the brain, balance therapy comes to mind, though i dont have any personal experience of continual vertigo, mine comes and goes but someone else might chime in with some ideas. Has anyone thought the vertigo is a by product of the vission issue or if it could be helped with prism glasses, might be worth checking out too.

You do have a few things that are highly suggestive that something is going on and does warrent further investigation! Its not good, when they investigate and find things, then dont put it all together as one condition, its just wrong to dissmiss somethings, blame something on something else and shrug there shoulders for other things, its just wrong. I would get a second opinion and also be demanding some help with the vertigo.

Cheers........JJ  

[Quixotic1]

Hi, I made it through the large block of text, but in the future we would appreciate short paragraphs.

It does seem as though something neurological is going on, but with your anxiety swinging you around by the ponytail, it is hard to evaluate them.  I agree you have to be proactive in tackling the anxiousness.  There are several things you can do to try to get a grip.

Talk therapy can be very helpful.

Meditation - can also work wonders

Exercise is important

Nix the sugar and the stimulants (such as caffeine) in the diet.

Work with your DH to get quality sleep (that wan't meant to be funny, really)  The more hours of good sleep you get the better.

And remember that MS is not a fatal disease.  For the vast majority it presents mere hiccups along their lives.  If this is MS you will watch your kids and grandkids grow and chances are good you'll never need a wheelchair.  So, do not hold MS in your worried mind as a greater demon than it is.

Everyone has given you good advice.

I hope you can be well.

Quix

[lararobin]

Thank you all so much for your support and recommendations. I will definitely try to make my posts easier to read.

I have been trying to lay off the sugar and caffeine completely. I am drinking a ton of water and trying to nap when the kids are down. Usually a rarity... but I try to at least lay down every afternoon.

I am trying to incorporate exercise/yoga into my daily routine as I know exercise is crucial in combating anxiety. I have never been one to take medication, but I did take Lexapro & Xanax for a month after being extremely wound up with my dizziness & blurred vision after my 2nds birth in 2009, when the new symptoms arose. It definitely helped me cut the cycle of worry.

It really helps to hear from you all as I know many of you have fought hard for a diagnosis and refused to give up. I am determined to get to the bottom of all of this and feel better for my family. I refuse to believe I will be dizzy forever; but if thats the biggest of my worries... I know I am still lucky.

It is also very frustrating having such little info available on Neuro invasive West Nile and if it can cause new neuro deficits (progressive condition) after the acute illness. It is such a new virus to the US (1999) there is little long term data available.

If any of you have any insight into West Nile causing new symptoms years after the acute illness, please let me know! I want to believe all of this has something to do with that viral illness and I don't have a progressive disorder. Instead stress/anxiety is causing my system to not be able to compensate as well around the damage that was done in 03 due to West Nile.

Again, thank you so much for your help. I really needed a little place to vent today. Rough day after yet another Dr appt (Opthamologist) that raised yet even more questions with no answers. Seems to be my norm. I've seen every Specialist under the sun including 3 Neuros with no real answers. West Nile was a big piece to the puzzle tho, so I guess I should be thankful.

Lara

[lararobin]

Bump!

[zenhound]

I'm still in limbo myself so have an idea of what you're going through.  To put it bluntly, it *****.  

For me talk therapy has been super helpful.  Find someone you connect well with if you decide to go that route.  Unless something is seriously off about the counselor, try giving it a few sessions before deciding to switch to someone else.  Sometimes it takes a while to establish a connection, although often it happens right away too.  Beware of people who peddle easy answers or are stuck on one fixed perspective.  

Think about how you've dealt with anxiety-inducing situations in other areas of life.  I've never had a problem with anxiety until the health issues popped up.  For me it has been really helpful to think about how I dealt with work, school, or other anxieties and analyze how that area is different from health.  I tend to be super analytical, though, so for some people an emotional "venting" sort of approach might be more helpful.

The advice you've gotten here is really good.  Take time for yourself when you can.  Rely on family and friends for help.  Don't be afraid or ashamed to coddle yourself a little bit.  You're going through something scary that most people never have to, so if that's what it takes to help yourself, do it.  

I'd also echo what Quix said about getting rid of sugars.  I tend to eat sugary junk as an emotional response to anxiety and that's ultimately a bad idea.  All things in moderation, etc.  

[zenhound]

Oops, didn't know there was a language filter.  And that a relatively common word would be on it.  Sorry!

[PastorDan]

You might figure I'd say this, but prayer can help.  I'll pray for you and yours.

[Guitar_grrrl]

Just my $0.02 worth, but MS or no, other diseases or no, LIFE in general is full of uncertainty.  I take it one day at a time.  

Even though I feel generally sh!tty, I got up, went to work for 6 hours, had a shower, ate 3 square meals, and am enjoying the company of my small family (just DH and cats).  I'd say that's a darned good day.

Peace,
Guitar_grrrl

[Wobbly]

we are all here for you to chat or ask questions.. take care and know that your not alone in looking for answers.. it can take quite along time.

wobbly