MS and me

[Lynnemaree]

Hi I am an Australian woman living on a farm on the coast of Victoria. I am 55 , a mother of 6 grown children and was diagnosed in 2012 with MS.

I was working atm and had suffered severe vertigo, fatigue and just total weakness. I was in hospital for 5 weeks as they thought I had had a stroke and left without a diagnosis. My GP put me onto a wonderful neurologist that diagnosed me.

On analysing many unexplained issues i had had in my past i realised i may have had MS for much longer than this, possibly even 15 years. I started on Betaforen injections. After 6 months I was taken off those as my relapses were still occurring and put on Gilenya. It was so less invasive as it was only a tablet a day.

Recently I was found a suspicious mole on my arm which turned out to be melanoma. It was removed and i had a further excision and sentinel node biopsy 5 days ago. I was taken off the Gilenya 3 weeks ago because of this as there has been some reports of Gilenya causing Melanomas.

It is disappointing as I now have to look forward to injecting myself with Copaxone. I am now awaiting on the results of my biopsy whether the cancer has spread. I NEVER thought I would have to deal with cancer as well as my MS. It is frightening. I am feeling quite horrid since surgery and worried about a relapse .

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Boymom123]

I'm so sorry

Hi there,

I am so so sorry to hear about your diagnosis. I hate that you have to deal with something else on top of MS.

Do you have to take an injection? There are other medications that are oral besides Gilenya. What about Tecfidera or Aubagio? Not sure if they are options for you.

As for the injections, I do the Copaxone 3x per week. I have been doing it for almost a year. AT this point, it's just quick injection and then go about my business. Good luck.

[chatmagique]

Hi! Gosh, I am so sorry you are dealing with melanoma in addition to MS. It seems so unfair and wrong that you can get other diseases when you have something like MS, doesn't it? I find myself wanting to say "My dance card is all full, but thanks!"

I hate that you have this added worry of cancer, and that you feel so run down. It sounds like your vocation is physically demanding, too.

While you are waiting for more news, can you think of some things that will soothe your soul and reduce your stress a little? I know it's an ironic question because being stressed makes it hard to envision having any space to take care of ourselves. I struggle with this daily and am gradually get better at self nurture.

I was diagnosed in June 2014, tried Tecfidera for a month but gained weight on it almost immediately, and by that time I had worked up the nerve to try Tysabri (I'm a good candidate because I'm JCV- and never had other immunosuppressive therapy). I have been very please with it - monthly IV infusions with little to no side effects. I don't know if that's an option for you but it seems to have been very effective for many people.

Good luck with starting a new DMD and I will send strong positive thoughts that your melanoma removal was complete and nothing has spread.

Best to you!!! Do something loving for yourself today.