[tom-sharpe]

Very unpredictable, always!

I have had 6 days of feeling great followed by do nothing days.

Taking Firdapse and mestinon(180mg) always, Every 3 hours from 6am to 6 pm, 20 mg firdapse and at 9 am daily (1) 180 mg mestinon.

I have heard LEMS is not progressive like MS but symptoms do change. Weakness, fatigue and brain fog seem to be my regular symptoms.

[tom-sharpe]

Agree, very cold, windy, early darkness is depressing. Up until this winter, I was in southern Florida, when it became impossible for me to enjoy the sunshine and warmth , including high levels of humidity. Fortunately, I found a neurologist in southern Fl who diagnosed me with LEMS. (this explained why I no longer enjoyed the heat of southern FL) Tried one more year and then we made the decision to sell Florida home and remain in Masachusetts. I miss the joy of nice weather in the winter, my wife and I tried a week long cruise the winter, with close friends. This did help, providing a break from the long winter. We like the cruise, and if you do not, then stay close to your friends. It helped me.

[tom-sharpe]

I tried ivig for 4 months, didn’t help me but I know many gain a great benefit from it. I got rashes and no upside. Re muscle cramps, I do get them at time and use Theraworx spray, very quick fix. Sometimes I take 2 Advil to help sleep. It seems I have a deeper sleep after abut 2 am.

[tom-sharpe]

I was 71, first symptom was shortness of breath .

[tom-sharpe]

Greetings

I had my first ivIG last month. My doctor ordered Tylenol and benedryl as pre meds per session.

My first month was spread over 5 days, 20% of a full dose each day, I did not experience side effects. Benedryl pill form was much better than IV benedryl.

Next week is my second month full monthly dose over 2 days, will let you know my experience.

Best wishes going forward.

[tom-sharpe]

Thank you Ashley. The dates look fine and Fri at 5pm is good for me.

Hope you enjoyed the holidays. Best wishes for the new year!

[tom-sharpe]

Yes, I am very interested.

[tom-sharpe]

Greetings Ashley,

My name is Tom Sharpe, I was diagnosed in February this year.  I consider myself extremely fortunate to have connected with a neurologist, specializing in neuromuscular disorders.  Having read stories of people with LEMS symptoms, but unable to gain access to the proper health case specialist is extremely scary to me.  I reside in Massachusetts, summertime, and Jupiter, FL winters.  I was seeing doctors at Brighams& Womens / Mass Gen. and was thought to have blocked cardiac arteries.   At that time my symptoms included shortness of breath and fatigue. My arteries were consistent with a 70 year old, not the problem.  While in Florida this past Feb, I was able to schedule an appoint with Gardens Neurology, Dr. Silvers.  He diagnosed me in our first meeting, 45 minutes.

I am his second LEMS patient.

After blood test and   EMG, he confirmed LEMS.  Prescribed Firdapse and Mestinon.  I followed the instruction closely, started with 3, 20 mg doses per day with Firdapse and 3 60mg doses of Mestinon.  Now I take 4 doses of 20mg Firdapse (80 per day) and 4 doses of Mestinon (240mg per day).  It works!

I am now also a patient of Brigam and Womens Mass Gen , (different doctors).  Dr. Amato agreed with Dr Slivers diagnosis.  I plan to continue with both doctors.

I want to try and help others and I am open to suggestions how to best be of help.

Tom