www.marblesforms.org

Thank you Connor for your creativity and dedication to helping those with MS

xo

Lora

xo

Lora

I recently changed neurologists because I wasn’t getting anywhere with my old neuro. The new Dr. ran lots of blood tests and ordered new MRIs.

Yesterday I had a consult with him and he told me my MRI hasn’t changed since my last one 3 years ago. He told me my symptoms do not correlate with my MRI and as a matter of fact, my MRI isn’t characteristic with MS.

He also tested me for other things like lupus, lyme disease, etc. but everything came back normal.

He told me that my symptoms are psycho-somatic, basically not real and that I have a deeper issue than the symptoms.

I am stunned. Has anyone else gone through this before? Is it possible for me to have symptoms but all tests come back negative?

As I write this, I am fatigued, some of my fingers don’t work like they should and I have tingling all down my right side.

Advice on where to turn now would be soooooo helpful.

Thanks
xo
Lora

The first article I saw was entitled “How to Talk to Someone with MS”.  For lack of a better response…OMG, finally!  Thank you for writing this article and putting this issue into perspective.

Please read the article here.  If MS or any other circumstance for that matter,  is a part of your life, this article will give great insight, reminding all of us that the disease does not define who we are.  Being a wife, mother, sister, friend, co-worker, artist, author, performer, contributor to society  and the many other roles we play defines who we are as a person.

AnonyMS makes a great point when she says “Sure, it’s helpful to have an MS mentor–and chances are, your MS’er has already reached out to someone…”  Many friends and family members may be offended if they are not the person the MSer reached out to.

Having MS is very personal.  You are no longer in control of what your body does.  Some of the things your body does just doesn’t make for good dinner conversation and is uncomfortable to talk about.

Think of it this way…You would never expect a sexual assault survivor to discuss every last detail of their ordeal with you and how they are dealing with it and the treatment options they have selected or not selected to help them cope.  You should never expect the same of someone who has been diagnosed with MS.

Yes, you are a close friend or family member to this person but you are not living the battle they are fighting.  For someone with MS, it is easier to reach out to a total stranger, a blog, or a support group.  Even though no one experiences the same symptoms, they all experience and know The MonSter intimately.

Let your friend/family member bond with their new family found in MS.  If they want to reach out to you, they will, but on their own terms and their own timetable, just like a survivor of sexual assault would.

Your job, be their friend and family member they new before MS, not their counselor.  Talk to them just as you did before The MonSter started to reside within them.

• Are you someone with MS?
• Tell me your diagnosis story
• How do you cope?
• What is your advice to others with MS?
• Are you a caregiver? – What’s it like being a caregiver and how do you cope?
• Is your parent someone who has MS?  How does that make you feel?
• How do you cope with your parent having MS?
• Are you a volunteer?  How do you help those with MS?

Tell me what it is you experience with MS, how you cope and what you can offer for advice.

I can’t wait to read what you have to say.

Once there to experience your moment within my MonSter, you will experience:

A fatigue like no other

The constant poking of pins and needles growing to a crescendo of stabbing daggers and swords

Complete weakness – the inability to move, to help yourself to the bathroom or a glass of water when you so desperately need it

Confusion. Something you used to do with ease and perfection is now a struggle and riddled with error

Total isolation

When I am lucky enough to have a good day, I can be fun, happy, active, alert, and make total sense. Demands grow, people forget about the MonSter lurking, and waiting to time it’s next attack. The MonSter attack plan is a shrewd one. Taking liberty to attack at the most inopportune times – completely corrupting the peace that had settled in its place since the last attack.

The MonSter is never fair, understanding or selfless.

The MonSter is always selfish, spoiled, demanding, and hurtful.

If you know someone with MS, try to understand the battle and warfare taking place within their body. Understand their good days will not last forever and for that reason, make their good days all the more sweeter because the bad are just around the corner.

If you have MS and are not being heard, or don’t quite know how to explain what is going on, let me be your words. Share this with those who need to live in the battlefield of MS, just for a moment.

xo L

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Thanks!

It’s been a while since I’ve last posted.  I was having a hard time functioning before.  Just getting through everyday living was a real challenge.  But now, life is pretty good…no, it’s great! 

I finally determined along with my doctor that I am unable to handle Rebif.  He recommended taking a two week break to get the drug out of my system and then start on Copaxone…again.

Well, my two week break has turned into 4 weeks.  I feel really good, my energy level is back up, I don’t have as much brain fog and my tremors have really subsided.  I am still not who I once was before my initial onset of MS.  I suffer from nerve damage that may never repair itself and I still fatigue very easily.  At least now I have a quality of life I can appreciate. 

I wonder though, how long will my good health last?  Your guess is as good as mine.  I am enjoying everyday, my daughter, my husband and being more active than I was over the summer. 

Questions For My Readers:  I know many friends who have MS and don’t treat themselves with any drugs.  I used to think they were nuts…but not anymore based on how I am feeling today.  What about you?  What are your thoughts on drug thereapy or other avenues of therapy.  I would love to hear your feedback with regards to those questions, to treatment options and answers to these questions:

1. How many of you have have stopped taking drug therapy for MS?
2. Have you replaced drug therapy with something else?
3. What are the major drawbacks of not taking a drug therapy?
4. What holistic approaches have you taken?
5. What tips do you have for living an active and productive life with MS?

Looking forward to hearing what you have to say.  Until then…

Stay healthy, keep positive and continue living your best life

xo

Lora