Everyday Life With MS

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I Am Desparate for Feed Back


Hello All!
I am going crazy trying to figure out what is going on with me.

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

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June 30, 2010 Posted by | Everyday Life, Fatigue, multiple sclerosis, Relapses, Symptoms | , , , , , , , , , , , , , , | 4 Comments

Catching Up


lasvegas-216It’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 ReadersI 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

December 3, 2008 Posted by | Everyday Life, Fatigue, Pharmaceutical Therapies, Relapses, Wholistic Therapies | , , , , , , , , , | Leave a comment

Relapsing


Tingling, tremors and brain fog!  Oh my!

That’s been life these past 3 days including the usual loss of balance, blind spots and falling asleep standing up!  Yikes!

I started a three day course of solu-medrol and finished it today.  It’s my third treatment in six months.  I haven’t really seen a huge improvement with this treatment – ever.  I still have the symptoms that originated 6 months ago plus some more.  Has anyone else had this experience with solu-medrol?

For me, solu-medrol is a sedative.  I fall asleep during my treatments and I am really lethargic the rest of the day.  I also get the metallic taste and for me it lasts and lasts as well as nausea. 

If this treatment doesn’t solve anything in the next month or so, my Neurologist is going to put me on a clinical trial.  I will let you know what it is when I find out and tell you if it’s something worth checking out.

In the mean time, let me know which treatments have worked for you.

Stay positive,

Lora

March 21, 2008 Posted by | Pharmaceutical Therapies, Relapses, Symptoms | , , , , , , , , | Leave a comment

Living With Relapses


lora-guru.jpg

 In 2005 I was diagnosed with RRMS.   I didn’t relapse for almost 2 years and now I can’t stop.  Yesterday I started my third treatment of Solu-Medrol hoping to slow down the progression of the disease. 

Relapsing is hard, it’s caused me to change my life completely.  I have gone from highly active to very sedentary.  I hardly leave the house and I had to quit my job.  I love to work, network, etc. but MS has taken that away from me…to an extent.  I refuse to let it completely take over my life.  I decided that I would work from home which would give me the freedom to rest when I need to.  I searched on the internet for valid stay at home jobs.  Those jobs are far and few to come by.  So, I created my own company and have lots of work that keeps me right here on my couch or in bed when I need to be there!

I have a company called Virtual Assistant On Demand.  Basically people outsource projects to me such as

  • blogging :o)
  • power point presentations
  • online advertising
  • PR
  • Brand development
  • Website SEO

Anything that involves a computer.  Check out www.virtualassistantondemand.worpress.com for more info.

If you need help transitioning from commuting to telecommuting, let me know…I will help you.  It’s a lot easier to be home, the struggles are still there but you can manage them to an extent, taking some pressure off.  Let me help you.

Be strong, have faith, look for that silver lining…it’s there.

xo

Lora

March 20, 2008 Posted by | Fatigue, Relapses, Working | , , , , , , , , , , , , , , , | Leave a comment

   

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