PatientsLikeMe ™

***UPDATE 9/2009*******

All of my disability has gone through finally!  I ended up getting a lump sum from my long-term disability company and am getting my monthly payments from SSA!  Okay that's pretty much it, life is wonderful now!

******UPDATE 11/25/08*******

Attorney filed my appeal for disability and we are back in the waiting game.  I am weaning off my meds so we can TTC in the beg. of 2009.  However it is making my TN hurt!  UGH!  I have stopped all of my anti-depressants and have been just trying to stay in a better place in my head.  I have good days and bad, but I make it through with the love of my hubby.  I am still in pain if I do too much and get fatigued easily.  It's getting to the crazy time of year, I just hope I can stay well to get through it!

******UPDATE 08/04/08*******
Did way to much over the weekend, it is Monday and I can't move off the couch.  My legs hurt so very bad.  Good thing is my TN seems to be better.  I stopped my Zoloft and imagine this my constipation and insomnia issues went away.  Need to start on Wellbutrin (due to depression issues) but scared of the side effects, so I started a meditation regiment which is helping.  I am having a HUGE issue with forgetting words, it is so frustrating.  Oh well life could be worse.

We are STILL waiting on my appeal on my disability to come back, I am hoping it is soon, because if it is not I'm not sure what we will do.

******UPDATE 06/11/08*******

6/10/08---PCP, puts me on Restoril for my insomnia, Miralax for the constipation, and we changed my birth control to Depo so I will no longer have a period (Woohoo), says I may have TN, check with dentist and neuro

6/10/08--dentist, still not sure what's going on with my tooth, she files it down again thinking maybe my bite is off.  Says it could be a combo of TMJ, TN and my bite.

6/11/08--neuro, he says it is in fact TN.  They put me on neurontin to control the tooth pain, leg pain and help control my tremors.  I have to have an MRA to check my arteries to see if that is causing the TN.  My sleep study came back as well and I do have sleep apnea so I set up an apt to have another sleep study to get my CPAP machine.

After having these apts. I am feeling a ton better and like I am headed down the right path.  I also had an apt with my lawyer and I feel really good about filing for my appeal with him.  He is going to have me do a DVD where I explain what all is going on so he can send it with my paperwork, it's always to have a face with the paperwork, right!

This is a picture from our beautiful outdoor wedding 5/12/07:


My MS story:  A nice Saturday in the beginning of October 2004 I was shopping with my mom as usual.  My hand was numb and very strange feeling, we talked about it.  When it hadn't gone away I called my PCP on that Monday.  She thought it could be carpal tunnel so she sent me for tests.  In the mean time my foot, then leg went numb.  By Wed afternoon my face and scalp started to go numb.  All of this was on my right side.  I called my PCP and she told be to go to the ER.  I did and they did a CAT scan and it came back normal.  The ER doc was the first person to mention MS.

My PCP sent me to a neuro who had me do MRI's and the lumbar puncture.  The MRI showed several lesions and the lumbar puncture came back positive.  The neuro would still not give me a dx so I sought out a second opinion.  The new neuro took one look at my MRI said "I can't believe you are still walking".  Told me to have another MRI and come back.  New MRI showed more lesions.  I also now had a bout with Uthoff's phenomenon and Optic Neuritis.  He dx'd me with MS.  Started IV steroids and Rebif.

During the next couple of years I had 3 relapses that all had numbness in extremities, another bout with optic neuritis, dizziness and fatigue.

This neuro left me after about 1 1/2 years to work in-patient only at the hospital.  The new neuro put me on Copaxone after my MRI's were still bad.  I hated the neuro and the Copaxone.  I had horrible site reactions and started to not do them every day because they hurt too badly.  I switched neuro's once again.  The new neuro went over things with me and had me do another MRI which showed so many lesions she couldn't count all of them.  She switched me over to Tysabri.  I love the Tysabri, the only reaction I have to it is it makes me REALLY tired.  I love the once a month infusions and no daily injections.  It really started to work quickly and I thought it was my miracle drug.

That brings us to Feb/March of this year.  I had some stress at home with my new hubby and A LOT of stress at work.  I went into the worst relapse.  My fatigue level was unbearable, I had vision disturbances in my right eye, dizziness, numbness in my leg, foot, arm and hand, spasms like crazy, migraines almost daily.  My last day of work was March 20th.  It was the best thing I could do.  My neuro didn't support disability so I switched neuros, yes again, love this neuro.  It's at an MS clinic.  Even my nurse is MS certified.  They really treat the "whole" person and don't blame everything on MS.  I have had MRI's of my brain, cervical and spine.  Evoked potentials test, sleep study, 7 vials of blood drawn, urinalysis and a cognitive test.

I'm still awaiting the results of MRI's and sleep studies.  The blood test showed a deficiency in Folic Acid and B12 so I am taking supplements of those.  Evoked potentials was fine on my arm, I couldn't stand the pain of the foot/leg one.  The cognitive test showed that my Executive Functioning was below average.  This is the area of the brain responsible for making decisions and choices.  I am hoping these tests will help in my battle for disability.  My PCP and neuro are supporting me in this fight so I am hoping my attorney has better luck on my appeal.

If anyone else is going through the fight for disability I would love to hear from you!