About MSlisa

Who Is MSlisaSAYS?

 

WHO AM I?  I am someone stronger than a being stopped by MS.  I am MSlisa. My kids call me, mom. My grandkids call me Nanna. My husband calls me wife…. You can call me, Lisa.

 

I am a 52 year old female who was diagnosed with MS, Multiple Sclerosis, in 2002. It took several years to obtain this diagnosis due to several reasons, but once I understood what I had all the puzzle pieces fit together. I had obtained different diagnosis over the years before ranging from Depression, Fibromyalgia, to Lupus. Some of the symptoms where similar, but I found that I never really fit into a certain group of any of these problems. It’s sad to say I was excited about obtaining a diagnosis in which there is no cure, but I was proud to know that it wasn’t all in my mind. I started on the regular regimen treatment type drugs, mine being Betaseron. It is one of the same type injection drugs to help reduce exacerbations of MS. After a year and a half, my doctor found that I was not responding to this medication. I had lost a lot of ground with muscle weakness resulting in falling a lot, so I was in a wheel chair at this point. My MS was located primarily in my neck and thoracic region around the spinal cord. My brain was the last place to form the sclerosis, which is a bit unusual, and why it took so long to be accurately diagnosed. My physician, who is a MS Specialist and also a researcher, found a new experimental medication called “Campath”, a chemotherapy drug, which had been used over in the UK for several years with great success in slowing down the formation of sclerosis lesions in moderate to severe MS and stopping new formations in light MS. It is not approved for treatment by the FDA for treatment of MS but is being used as a study drug for possible approval. I started this drug seven years ago and received a successful outcome. It not only got me out of a wheel chair but it had me walking without any assisted devices by the third dose. It also reduced how many exacerbations I was having by 70%. I found this medication amazing. You take it by IV once a day for 3 days one time a year. With my aggressive form of MS, I was able to go an additional four years without another dose…AMAZING, right?? I just took my fourth dose in March.

 I am a 52 year old female, diagnosed with Multiple Sclerosis.

Yes there are side effects with all medications, but I have spoken with several people who have taken Campath, and I have yet to hear any negative debilitating symptoms or problems that have come from taking it. When I ask them, will you take it again, I always hear the answer YES.  You can receive it through a study and at no cost for you at the present time. I have found it on the internet, mostly to treat a cancer known as Lymphoma, but it you look further, you will find information with it being used for treatment of MS.

 

(Symptoms)

Let me begin by saying no one person has the exact same symptoms, the way they appear or how long they last. Mine started off with occasional symptoms that lasted for short periods of time. Generalized weakness, tingling and numbness in hands and feet, headaches, vision changes, were some just for start. Later things became more pronounced and lasted longer periods of time which included dropping things, fatigue, problems with picking up small objects, having trouble with water temperature sensations with my feet and lower legs. Next I started having trouble with swallowing, falling, balance issues worsen over time, experiencing shock like feelings in my vertebrae area, muscle spasms.  The bottom of feet became numb consistently over time. I was experiencing bladder and bowel incontinence off and on, experiencing trouble with memory, expressing myself, having slurred speech. By the time I started the Campath, I was told that I was a 9.7 out of 10 on the MS Disability Scale.  Since my treatments, I have improved down to a 5.5 today.

 

(Diagnosis/Treatments)

MRI is usually the method used to diagnose, but an Evoke Potential, can also help identify areas most like to have problems. A Nerve Conduction Study along with a Spinal Tap can be used as an effective tool with diagnosing and treatment with MS.  As far as treatments go, new medications have come out within the last couple of years and more are on their way to approval. Keep yourself informed by continuing to look up and research this disease, also speak with not only your physician, but also your pharmacist.

 

(Where I am today)

Hey everyone, going through an exacerbation with my MS right now. It’s funny because I’ve gone a while without having one this severe. I tend to forget how overwhelming that it can be. Fatigue seems like telling someone that you have a hang nail but it can be debilitating. We have to remember that frequent rest periods and listening to what your body is telling you will help lessen the time and severity of this process. Sometimes, the symptoms sneak upon you so slowly that you don’t realize until you have an exam what you can’t do or how much function that you have lost. Although, if you remember to write down each day how you are doing, when reading over these things, they might be more apparent to you. I know that during an exacerbation that a good restful sleep is important. If you haven’t thought about it in a while below are some tips to help with that.