Brief hiatus...

It's been a while since I last posted.  I have been dealing with one major issue.  While Lemtrada has given me back a lot of sensation in my feet, it comes with a price.  I was diagnosed with Peripheral Neuropathy.  I've probably had it for years just could not feel it.  I am now on Gabapentin to help with the symptoms.  I have to say it is an extremely painful condition!

Gaining more freedom and independence back!

Over the last couple of weeks I've begun to regain more things.  I am noticing the sensation in my feet has improved significantly.  This has enabled me to start driving more regularly.  In the last couple of years I have driven sparingly.  I have also restarted physical therapy and my baseline examination was already better than the last time I was doing physical therapy.  This drug has done some amazing things for me so far.  I am optimistic that things will continue to improve over time.

It's the little things...

So yesterday I went to see my eye doctor for an eye exam.  I have been doing this fairly regularly over the last few months since I had some issues with my vision.  The last time I went in before Lemtrada I had vision issues in my left eye and the visual field test that she ran came back with some degraded vision in the visual field.  The results of yesterday's test was that it had dramatically improved to normal in my right eye and a very slight bit off in the left eye.  It's remarkable how it's improved in such a short time.  I notice things are no longer blurry in my left eye when I read text. We also had our AC Unit go out on us this week for a few days.  Our house was 84 degrees on the inside and I was able to tolerate it.  Before Lemtrada I would have had to leave completely.

More things

I've noticed that my energy levels have gone way up.  I also noticed that my gait is a lot better and my heat tolerance has improved significantly.  I am excited to see what the future holds. This is the best I've felt in a long time.

Thoughts on what i'm noticing 1 week post lemtrada

My ataxia has improved before I could only close my eyes while standing for 1-2 seconds before I start to lose my balance. I have a lot more energy and my pain levels have decreased significantly.  I also noticed that my spasticity is gone as well.  Kind of surprising for just one week after the treatment.

Medications taken with Lemtrada

Just a brief listing of what I've had to take and currently taking.  Some of it was given during the actual infusion, some of it I've had to take before and now after the infusion.

• Acyclovir - Herpes Anti-viral taken twice a day started this before I was infused and will have to keep taking this for a while.

• Ranitidine  - This is the generic name for Zantac, used to combat upset stomach when taking Lemtrada

• Hydroxyzine - This is in the same family of drugs as Zyrtec (anti-histamine), helps to combat rashes and itching associated with the Lemtrada.

• Benadryl (IV) - Another anti-histamine.  Also helped with rashes during the infusions.

• Solu-Medrol (IV) - Steroids given during the first 3 days of the infusion (can vary by infusion site may be given more than 3 times depending on reactions).  Helps to keep the reactions to the Lemtrada to a minimum.

The paperwork involved with Lemtrada

As you can imagine a drug such as this is heavily restricted in our health care system.   Never mind the fact that it's been given overseas for much longer.  Please keep in mind that some of this is still fluid and keeps changing (another frustration).  Here is how it went for me:

• Early November 2014 - Filled out initial paperwork at Neurologist's office during my visit
• November - Also enrolled in MS one to One.  This is Genzyme's patient services program. They are pretty good to deal with but they are still working out a lot of the kinks.  I was a good test case for them, more on that later.
• November - Early May 2015 - Lots of waiting and frustration.  My area's supposed first infusion site was not going to be able to see me until Mid July!!  I was not happy so I contacted my Neurologist and he found me another infusion site in a different part of the state.  If it wasn't for him i'd still be waiting on this treatment.
• May - June 1st - Waiting and a lot of snafus and paperwork, dealing with insurance company, neurologist office, infusion site and drug company.  It was an incredibly stressful time that I will detail in another post.