But with MS, those hot days mean a body that feels like it has been wrung out and tossed to the curb, a leg that barely functions, and a mood that is very difficult to brighten.

So I am trying to learn to love the fall. When I can once again awaken with a smile on my face, a leg that does not drag, and an attitude filled with excitement about the new day and all that it has to offer. I am learning to love the cool air in my lungs, to appreciate the need for a jacket, to take the time to smell the mums and daisies, and to enjoy the ability to do a little raking and playing in the leaves.

I doubt I will ever enjoy the switch from light, short, and sleeveless clothing, to those layers and sleeves, but slowly and surely, fall is becoming my favorite season.

Sometimes I just want to forget that I have MS.  But it is impossible.  Every time I take a cool shower, even when it is cold outside.  I used to enjoy a long, hot shower.  But those are a thing of the past.

Sometimes I just want to forget that I have MS.  But it is impossible.  Every time I reach for a snack or look at a menu, I have to remember to order and eat something appropriate for my MS-friendly diet.  Low, low, low fat.  No cheese.  No pastries.  Nothing made with processed sugar.

Sometimes I just want to forget that I have MS.  But it is impossible.  Every time my daughter wants to race, I have to pretend that I am running, for I might fall.

Sometimes I just want to forget that I have MS.  And every time I look into the eyes of my beautiful children I do forget. And I remember how fortunate I am.

Let’s just say the appointment was both more and less than I had expected. We met with two neurologists, both of whom were very knowledgable and thorough, and particular about looking at the actual MRI ‘films’ as opposed to reading the report written by the radiologic technologist. The problem with this was that we soon discovered that the technologist who burned my CD neglected to include the images of brain scans. And of course the majority of my lesions, and those that are causing my symptoms, are in my brain.

Furthermore, they informed us that they want to conduct more baseline tests – basically, so they can track the progression more accurately. Why not work on slowing down the progression imminently? Instead, they seemed more interested in making certain they have a thorough report of my relapses and progression.

One of the tests they want to conduct involves taking fluid from my spine. I am not looking forward to that one.

I asked a few times why they were not recommending me for disease modifying drugs, ASAP. Typical science-minded professionals: they want to be able to track, track, track.

Ah well, fingers (and toes) crossed I will not have another relapse before August – the date of the many tests and possible recommendation for an appropriate disease modifying drug.

Sixth-grader Surabhi Iyer of Franklin, winner of the Comcast South Shore Spelling Bee held in Randolph in March, has advanced to the semifinals of the Scripps National Spelling Bee, which will air live from Washington at 10 a.m. Thursday on ESPN. She is a student at Ben Franklin Classical Charter School.

Read more: http://www.patriotledger.com/archive/x724665981/South-Shore-spelling-bee-winner-makes-national-semifinals#ixzz1O8HssaD

2

I am nervous.  And a little hopeful.  Will they get me started on disease modifying meds today?  Will there be any good news?  Bad news?

Information is power, but it can also be depressing.  I am getting used to my weak and throbbing leg.  I am not looking forward to learning about worsening symptoms.  But I am ready to fight.  To do whatever I can to slow – or stop – the progression.  I need to stay mobile.  To provide my children with the childhood they deserve.

I am nervous.  And a little hopeful.

And to make matters worse, the referral department has to make my appointment.  I do not understand why I cannot make the call.  But I can call my primary care doctor’s offices, as well as the referral department.  Which I did.  Every other day, for 9 straight days.

I have a date.  Two and a half months from now.  It will be 3.5 months after my diagnosis.  Everything I read says it is so important for me to begin the disease modifying meds as soon as possible.  I just hope I do not have another relapse prior to my appointment.

Physical therapy is going well.  My  physical therapist is fabulous.  She too has young children so she knows what physical abilities are important for me to be able to continue, and she designs exercises for me to do at home with children in tow.   We are focused on strengthening my core.   I was hopeful that we would be able to strengthen my weak leg, but that is not the case.  It is ‘weak’ due to the fact that the sclerosis, or scars, make it difficult for the messages coming from my brain to reach my leg (and other areas, but it is my left leg that is most affected).

More reading and research.  I have read three books written by and/or for people with MS, as well as personal accounts found online.  Some are uplifting.  Others are depressing.  The two constants are that there is so much research being conducted that the experts are hopeful to soon have an answer to the question of what causes MS, and that MS affects each victim differently.

I made an appointment with a neurologist at The Partners MS Center based out of Brigham and Women’s Hospital.  We are so fortunate to have so many superior medical options so close by.  Unfortunately their first availability is 2+ months away.  Fingers crossed that I do not experience another relapse before my appointment and before I can begin disease modifying medications. . .and that I do not have any insurance complications.

The receptionist called us into his office.  We sat down.  He asked me why I was there.  Umm, do you not know or are you testing my cognitive abilities?  I was not certain of the answer to that question, so I behaved and answered professionally.  But then he became antagonistic.  ”Does your mother have MS?  Is that why you are here?  Do you have MS?”

I wanted to say, “Listen FOOL, I am here for YOU to tell me whether or not I do. . .”, but instead I remembered my mother’s experiences with neurologists, and decided to behave like the well-behaved patient.  In my 16+ years of experience with my mother’s neurologists, they think they are gods and thus have LITTLE bedside manner.

He then proceeded to look at my MRI results FOR THE FIRST TIME, and to READ THEM TO ME.  Lovely.  He has not come prepared.  Being a former educator, there is little that irritates me more.

From there he conducted his brief neurological examination.  I used to be so interested in what such an examination told neurologists.  I no longer cared to know.  I knew it meant bad things for the examinee.

He told me that the good news was that I had “many, many lesions in the matter between the two sides of your brain and in your upper neck, but that only one is truly affecting you.  If I had read your chart before seeing you, I would expect you to be in a wheelchair and perhaps not able to see.”  LOVELY…I guess I should be thrilled that I am not as bad as my test results.

My visit concluded with the entire office staff searching for the disease modifying medication notebooks that each of the drug companies provides.  I was handed a stack of ‘light reading’ and sent on my way.  I was to return in two weeks with my choice of disease modifying medications.

As much as I want to get going on preventative therapies, I will not be stepping foot in that office again.  On to find Neurologist #2 and the disease modifying medication that best suits my lifestyle.

Research.  Read.  Digest.  Make a plan.  There must be something I can do.  I cannot become as disabled as my mother.  I am too young.  I have too much to do.

There are diets.  Supplements to take.  Do any of them work?  Are they safe?  One diet insists on a gluten, saturated fat, dairy, meat and legume free existence.  I am willing to do whatever it takes to stop the progression of MS and to keep myself as healthy as possible for as long as possible, but under such a diet, what does one eat?  How does one have the necessary energy to stay active?  To exercise?

According to the National MS Society’s website,”While many different diets have been proposed as a treatment, or even a cure, for the signs and symptoms of MS, evidence of effectiveness is very limited. There is some evidence that a diet low in saturated fats and supplemented by Omega 3 (from fatty fishes, cod-liver oil, or flaxseed oil) and Omega 6 (fatty acids from sunflower or safflower seed oil and possibly evening primrose oil) may have some benefit for people with MS.Most of the diets that have been touted as helping people with MS have not been subjected to rigorous, controlled studies, and the few that have been evaluated have produced mixed results. Most of the claims made for dietary treatments are based on personal accounts, and the reported benefits may have been spontaneous changes that would have happened without any treatment.”

So what do I do?  More research.  According to the Swank MS Diet website, “The rise of MS in recent decades has mirrored the increase of highly saturated animal fats in the Western diet, which caught the attention of Dr. Roy L. Swank, Ph.D. He researched and devised what is now known as the Swank MS Diet, which he first introduced in 1948. The Swank MS Diet looks back to our pre-industrial roots for inspiration – when we ate the fruits of our own soil, when meat was a luxury – before food was distilled into a list of nutrients and ingredients.”

So what do I do?  Adopt the Swank diet until I see the neurologist?  It is a healthy, heart and figure friendly diet.  It cannot hurt.  It is something I can do.  It is something I can control.

Just as I had my daughter in my arms, on the way to the freezing car, the phone rang.  Typically I would not have answered it, but I saw that it was my physiotherapist’s office.  I wanted to make certain I was not going to be charged for canceling the appointment with such little notice.  I expected the person on the other end of the phone to be one of the friendly receptionists.  It was the doctor herself.  I had only had the pleasure of meeting her once, but that meeting left me believing that she was a very calm, happy person.  This was not the tone of a calm, happy person.

Without taking a moment to breathe, the doctor stated: “Lisa I understand you cancelled your appointment with me today and I am so sorry to have to discuss this with you over the phone. I wanted to make certain you could follow up on this immediately and I have already made an appointment for you with a neurologist so I hope you can make the appointment because I am no specialist in the area but according to your MRI results you have MS.”

“Umm, where and when is the appointment?” was all that I could muster.

A little background: I was referred to the physiotherapist by my primary care physician after learning that my left side – primarily my left leg – was weak following very little exercise.  We both thought and hoped it was something minor, perhaps related to child bearing. After only 12 minutes in the physiotherapist’s office I was sent ‘stat’ for a series of MRIs.  I did not know the doctor so I just figured that her urgency was due to the fact that she was also a mother of young children so she understood the importance of determining the cause of my weakness and get me into and to ‘fixing’ me as soon as possible.  Unfortunately, there is no ‘fix’ for MS.

The remainder of the day was a blur.  I focused on taking care of my ill daughter.  I conducted a small amount of research on MS via the Internet.  What I discovered confirmed for me that the MRI findings were correct.

I felt numb and tried not to think about it.  When I did, I could only think of my mother.  She has been in a wheelchair and almost completely disabled for over 10 years.  Her first MS episode – that we know about – occurred 15 years ago.  I cannot be in a wheel chair right now.  So much to do.  Children to raise. Children to play with.

I cannot go blind.  I cannot suffer from depression.  My children deserve a happy, care-free childhood.  There is no cure.  I need to do something.  I am feeling very hopeless.