“Hold fast to dreams,
For if dreams die
Life is a broken-winged bird,
That cannot fly.” ~ Langston Hughes
Hope can be a dangerous thing. So, I tend to steer away from it. At best, I’m cautiously optimistic. To be clear, I’m talking about dreams. Specifically a medicine to treat secondary progressive multiple sclerosis (SPMS), which is the type of MS I have. The minute I went from walking, to using my wheelchair I became secondary progressive. My doctor said it’s when you no longer come back to your baseline after an exacerbation. The relapses and remissions that used to come and go change into symptoms that steadily get worse.
In the past, while in the relapsing remitting (RRMS) stage, I took various routine ms interferons. But I still progressed. I’ve been on monthly Solu-Medrol infusions or steroids, Novantrone®, Avonex®, Rebif®, Copaxone®, Gilenya®, Tecfidera®, Tysabri® and Betaseron®.
Since being diagnosed with SPMS, I’ve started taking Rituxan®, which is a drug actually used to treat breast cancer. Why take Rituxan? Well, presently there is no treatment for secondary progressive. So that’s the best they can offer me at this point.
Hopefully soon, medical marijuana will be on my list. It was recently approved in my state, so as soon as it’s available I will apply to get some legalized cannabis.
The hardest part of having secondary progressive is the decline in various abilities. Due to cognitive problems I can’t drive. Talk about life changing events! But I’m so lucky I have a personal driver in my husband. Also, right now I’m using a computer program known as Dragon to type this post. My fine motor skills are so poor; I even need assistance with everyday task like eating and getting dress.
These things didn’t happen all at once. It was a slow decline over a period of years. But I’m still here with you managing to get it done.
Thank goodness for my husband. He is good for me and to me. And he helps me keep my hope alive.
Hi Nicole-I too have SPMS and when we were living in Colorado in 2011 before it was legal for every day purchase I became certified by visiting a local doctor for medical marijuana. Went to a local medical marijuana dispensary and tried it by eating the food-either I took too little and had no results or too much and had bad results. Then I bought a vaporizer and tried that-same deal… I never smoked it because somehow I associated that with ‘druggies’! So now I live in Boston and I just this minute asked my friend Siri if it is legal in Massachusetts. The answer is that yes it is-for medical reasons! There is a dispensary just 2 miles from where I live! I’m so happy to read about everyone’s willingness to try it because that just spurred me on to get some ASAP and smoke it! Thank you, friend! AA
PS-I feel the same way about my husband that you do!!
Hi Nicole, I so appreciate and enjoy and “like” your blog, so good. And I just want to tell you about a new drug trial I am on in Wellington New Zealand. Drug called MIS416 , produced by Innate Immunotherapeutics. It is having some good results and it is truely looking hopeful! (Early days for me and a lot of side effects at start )Specifically for SPMS.quite a bit of information on line. If you google MIS416 u tube there is a really moving video of 2 people from Christchurch NZ who were on the very first trials. They are now getting it on compassionate grounds from the company. It is all feeling very very hopeful. And I know I am really lucky to have managed to get enrolled in the trial for twelve months. Do have a look at it. Arohanui jenny
Nicole, I have never taken any of the drugs. I was allergic to the steroids and the immune suppressant drugs weren’t developed until I had MS at least 10 years. My friends taking the drugs weren’t doing as well as I was…so I never automatically think of the next drug as being the answer. I think I have been lucky in a way not accepting advice from the neurologists without skepticism. I also knew Dr. Damadian and had enormous respect for him over the years as I watched all the leading manufacturers of MRI machines stealing his technology. I watched as he pursued them for patent infringement and won…it went all he way to the Supreme Court. In all the years, he never lied or misled me. So when he asked me to come back to NY to join his MS study, I was somewhat open minded. Lucky for me as he and Dr. Rosa gave me my eyesight back and the feeling in my abdomen…and got rid of my constipation and bladder infections even though in SPMS for 9 years. I got to sit with Dr. Damadian and leading MRI scientists looking at my MRI scans…and seeing for myself the blockage in CSF flow…and seeing leaking CSF from all four ventricles in my brain. The leakage lead right to the lesions…and I saw it with my own eyes. I also saw the lack of blood flow in my brain before Dr. Rosa treated me…and the open blood flow and CSF flow after I was treated. That is why I am more inclined to take notice of physiological connections to MS.
As you can see, I am not a “pharma” girl. However, I have been using lidocaine ointment for the pain in my lower back…a result of pinched nerves due to scoliosis in my lumbar region. I also am taking “levodopen” which is giving me a little more walking ability. (It is a Pakinson’s medication and is low dose…I take one tiny pill in the morning and again at night.) And the best part is that it only costs $2.00 a month after insurance…and my doctor said why not? He said I would know in a day or two if it was helping. Well, I can now walk with a cane to go to the restroom when I go out to eat, and my life has improved as I walk a few steps around the house without a cane. SO, now I guess I am a pharma girl afterall.
Nicole,
I keep you and your wonderful supportive prayers and hope they find something that will halt your decline and improve your quality of life. You are a source of great hope for me as you always see the good and haven’t given up on telling us your trials and tribulations and HOW you live with them. Bless you.
Hope the wacky weed relieves some of your symptoms. I used it when I was first diagnosed and learning to walk again – it helped a lot with the spasms.
Take care,
Nicole
Like you, I am SPMS. I can identify with all you say. I am 64 and losing hope that they will come up with something before I get too old or too disabled for anything to work. Hope is slim but slim is better than none. You help keep my hopes alive. God bless you.
Hi Nicole. I am so thankful that you are here and post. Your honesty and keeping it real is admirable. You give me the strength to keep pushing. Your spirit is contagious!!
Melissa, your comment was so nice. Now I don’t want to let you down!
Nicole,
I read your blogs frequently and as an MS patient myself, feel some similar emotions to you, of course. Today I was excited for you and I wanted to share something that I have been wanting to say, but haven’t until you mentioned it.
I was Dx in 2012 while in the U.S. Army stationed in Louisiana. I was put on a lot of medication as all of us MSers usually are, and failed on many of the approved conventional therapies for RRMS. After my release from the military I moved back home to my state where Medical Marijuana has been legalized since 2009. It brings me much pleasure today to tell you that this amazing, and natural plant gave me my life back with no side effects! Not only does it relieve a lot of symptoms, it also has given me 35 months of relapse relief, out of the 40 months I have had this ever so sinister disease.
I know many are nervous about the “unknown” and are concerned for the long term effects of usage and though that is understandable, it is no different of a concern than any other medicine one begins taking. I don’t know if this shall be your choice, but if you ever decide..as you know more than I, it is difficult having such a disease, however with a safe, productive therapy that provides a little giggle every now and then makes it just that much easier to remember “I have MS, MS doesn’t have ME!”
I worry for you my friend, but your strength has empowered many including myself..you are a blessing. I hope you continue to stay optimistic, and when the time comes for the medicines approval in your state, that you speak with a licensed professional in your area and just try!! For I truly believe you will not be disappointed.
You have my best wishes, Nicole!! I will continue reading your blogs and praying for your wellness as I have for over a year now…& just to let you know I am doing my best up here on the northern East Coast to enlighten those with this disease, that life is BEAUTIFUL no matter angle you see it from! 😉
And always remember:
“Nothing splendid has ever been achieved, accept by those who dare believe something inside them was superior to the circumstance”
Thank you again for your candor AND your inspiration.
Hey Nicole,
Just keep moving, and thanks for your vigilance! We have to keep fighting for a cure and you inspire me to keep on running! I’ll be posting an update soon on FB from the car accident I was in on Msy 13th, only on compression fracture of my T11…so no running until cleared this week. Keep your chin up and keep on keeping on!
Your Friend,
Tim aka MSRunnerDude
Tim,
You take care of yourself. That’s an order.
You are so amazing Nicole! Your posts bring me so much happiness. As someone hovering on the edge between rrms and spms, we all must strive to keep that optimism.
Christine,
Thanks so much for the nice words.
Nicole – I so admire your strength! You never fail to share your journey with all of us. Right now I am RRMS and I recognize how fortunate I am right now to be able to still fully function for the most part. Thank you for being so open. You are very blessed to have such an amazing husband.
Robyn,
Felt like I was in being honest so I came out the clouds so to speak!
Have you read about the biotin studies? They’ve had pretty amazing results in Europe and in the US, specifically for progressive MS. I waited for the phase 3 studies to be completed int he US before jumping on the bandwagon along with thousands of other people. It can take 8 to 9 months to show improvement, but I have friends who’ve had remarkable improvement after only a month. It’s inexpensive and there are no side effects. Someone has already managed to patent it – which doesn’t make sense, it’s like patenting water. But it may not be long before the price skyrockets. What have I got to lose?
No I haven’t tried it. But you’re right, what have I to lose?
A friend of mine who hadn’t walked in years is now walking unaided after a few weeks on biotin. My results are not as good, but it’s early in the game.
Laurie,
What doses you and your friend are taking of biotin? I read the study but they’re using 300mg per day. There’s nothing near that dose available. The closest I’ve found is 10mg (10,000mcg).
I’ve actually joined a Facebook group of almost 1000 people who compare notes on our progress with biotin.
Most of us started off on the 10mg pills, because that’s what was readily available. 10 pills 3 times a day. It was easy because the pills are very small. Some people have it compounded at a pharmacy, but it’s expensive and you need a prescription for compounding. The pills are filled with, well, fillers and are nowhere near as effective. In the studies, patients were given the pure powder form. Pretty much everyone I’ve know is now taking the pure powder form, easily available from bulk supplement companies. Many have bought a tiny scale to weigh it out, others use the estimated 1/32 teaspoon 3 times a day. I lazily take 1/32 tsp 3 times a day. I put the powder under my tongue for as long as I can, then wash it down it a drink. Some mix it with apple sauce. Whatever works. This is the most amazing discovery EVER for people with progressive MS. Keep in mind it can take 9-12 months to see results. If you want to e-mail me, I’m at [email protected]
Nicole,
I am also SPMS. I am taking cytoxan, a chemo drug. It has been used off label, to treat MS since the 1960’s.
Most people have never heard of it. It is cheap. Big pharma doesn’t make $ off of this drug, so it is generally not “pushed”
I am seeing awesome results with this med!
I am able to walk around my house no walker, no cane. I have not done that in a long time. It is not graceful, but I am still able to do it.
Good luck to you!
Faye,
walking? That’s unheard of ! I’m definitely going to ask by Dr. about cytoxaen. I didn’t know you were secondary progressive.