Living With Multiple Sclerosis – Four Years

by Sara on December 1, 2012

Living With Multiple Sclerosis“They” say that you are considered newly diagnosed for the first 2 1/2 to 3 years after your Multiple Sclerosis diagnosis. It seems like only yesterday that I posted my “Year One” article. It seems like only yesterday that  I was diagnosed! Somehow, enough time has passed that I find myself at a point where I have been living with Multiple Sclerosis for four years.

In January of 2010 I reflected on my life after living with Multiple Sclerosis for a year. At the time, I felt that I knew as much as I possibly could about the disease. I had undergone MRI, a spinal tap, and had begun using Rebif to slow the progression of my disability. While many things have stayed the same, the landscape of life as an MS patient has changed a lot.

Technology has allowed us to make more informed opinions about our neurologists. My neurologist is fantastic, but I had to fire two doctors to get to her. The availability of information has also allowed us to become more educated about medical marijuana and it’s protective and therapeutic properties (I foresee a continual demand from US citizens in future elections).

On a very personal note, one result from my diagnosis was a continued issue with weight for which I have now undergone surgery. Extra weight and reduced mobility can become a vicious cycle. Once I had realized that I was at a crisis point in my life, I knew I must take drastic measures. At almost 3 months out and 60 pounds less, I can honestly say it was the right decision for me.

Part of living with Multiple Sclerosis is dealing with pain. Sometimes this means horrible pain (such as the MS Hug). Loved ones have seen me through this pain and other challenges which has caused an evolution in most of my relationships.

In December of 2008, stem cell therapy had just begun human trials. Now it is vastly more popular and may one day become common. In the time since my diagnosis, CCSVI has taken off as a possible way to relieve some symptoms possibly even permanently for some patients.

Looking back, I can see signs of MS for as long as I can remember. Once diagnosed, it was painfully obvious and stress made everything worse. My husband and I evaluated our life and found ourselves woefully unprepared. From practical things like being prepared for emergencies to our finances – our life was disorganized. We began a transformation and overhauled every aspect of our life. We even evaluated our careers and I’ve recently returned to school to complete my bachelors degree. Healthwise, we now know that exercise is key to improving your prognosis although it was once believed to trigger relapses. We know that nutritional health is important but are still learning more about this.

Maneuvering around the hot southern summers can be a challenge, but I have re-learned to ride a bicycle (it’s easier than walking) and strive to do so as much as possible. Hopefully I will even be in the 2013 BikeMS (on the shortest trail possible)!

I have fought with insurance companies and have learned to despise the for-profit private insurance system so inexplicably preferred in the US. In the end, after a horrific relapse, I was able to switch from Rebif to Gilenya which has treated me well so far. While I am happy on Gilenya, we are on the cusp of access to a new oral drug which I suspect will become the treatment of choice: BG-12. Everyone I know with MS hopes to switch to this medication with its high efficacy and extremely low risk. If I find myself making a change in the future, this will be the drug I fight for.

My primary symptoms have changed from time to time. Weakness in an arm, weakness my legs, lack of balance, depression, vertigo, spasticity, fatigue, and now brain fog. The disease is unpredictable, and while we may see a cure in my lifetime I do realize that I am likely to always live with it. I’ve learned to roll with the punches as much as I’m capable. While I can’t believe 4 years have passed, I also can’t believe how much progress has been made.

For those of you also living with Multiple Sclerosis, hang in there. I know and you know that the disease progresses. It does. But so do we, and maybe we’ll catch up to it one day. Whatever may happen in the future, we can rise to the challenge.

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{ 5 comments… read them below or add one }

Jennifer January 12, 2013 at 7:31 PM

Hi, I’m new to this site and relatively new to MS! I was diagnosed about 2 and half years ago but my neurologist thinks it first started 13 previous to that. I have relapsing/remitting ms, and fortunately am not badly affected.
Fatigue is my biggest problem at the minute, along with the dreaded hug!
What worries me is what’s next?! I seem to be living my life waiting for something to happen, how do I tell if a symptom is ms or something else to worry about? I’ve recently been sent to see a rheumatologist because of swelling and pain in my hands and fingers, my doctor tells me its nothing to do with ms, but i don’t know!
Sorry for my rant, I don’t know anyone else with ms, so thought the internet might help me, and your post made so much sense to me!
I’m not on any medication, here in the uk it seems they want you to have a couple of relapses before they do anything, but it is getting me down now.
Thank you for listening and any information you can give will be gratefully received.
Thank you
Jenny

Reply

Sara January 14, 2013 at 9:43 AM

The general rule is that if something persists for 24 hours or more, it’s a relapse. However, when I have sudden muscle weakness I’m not going to wait 24 hours to see if it goes away – I call my neurologist immediately. It’s very frustrating to feel like you have no control over what might next happen to your body.

I am in shock that they haven’t put you on any medication yet. You should definitely push for that. I’ve been successfully on Gilenya for awhile, but BG-12 is coming out soon. I know that these things can take a little longer in the UK, but hopefully BG-12 will be approved there quickly. It has a fantastic safety profile and it’s a pill.

It has been great hearing from you – please feel free to ask any questions you may have. My heart goes out to you for suffering from fatigue and the hug. Both are very difficult to live with.

All The Best,
Sara

Reply

Jennifer January 14, 2013 at 6:27 PM

Thank you for replying, Sara.
I think the theory with the medication is that as i haven’t had a relapse since being diagnosed they will wait until i do!
The hug (there must be a more appropriate name for it!) is a concern for me. Does it indicate a relapse or is it something that is continual? I find at times my skin over the affected area is very sore to touch, and wearing a bra is very uncomfortable, i guess that’s all part of the fun of this silly disease!
Thanks again for replying,
Jenny

Reply

Sara January 14, 2013 at 6:57 PM

I don’t believe anyone understands the nature or pain of the hug. Many people believe that it’s a symptom caused by lesions on the spinal cord, but I don’t have any there. I would say that my experience makes it seem that they are usually just a symptom, but when I once experienced weeks of one ongoing, excruciating hug it had to be a relapse. No one treated it as a relapse, but I certainly believe it was. I experience mild hugs fairly frequently and knock them out with diazepam. When I experience very severe hugs my husband usually has to drive me to the emergency room for IV muscle relaxers and painkillers.

When I experience the hug there is usually a lot of vomiting from pressure somehow applied to my stomach. The whole area is sore to the touch and any clothing is very uncomfortable. It’s something I could not have imagined without having experienced it! I wrote an article about it long ago in case you’re interested: https://www.diagnosisms.com/2011/04/29/what-is-the-ms-hug/

The availability of information regarding MS has SKYROCKETED in recent years. It’s amazing what we can learn about this disease now.

Reply

Ann April 3, 2013 at 3:26 PM

Hi every one! I am new to this posting business, even thought I’ve been using computers since they were hatched!
Anyway I was diagnosed in 1984 when I was 40 (had my first MS symptom in 1978). I was the relapsing MS, but now 7 years ago I was changed to secondary progressive. There is only 1 drug for secondary progressives and I had to quit it two different times as the side effects were bad and the improvement in walking was barely significant.
I have the usual weakness on one side, with balance problems. Also the numbness and tingling, urination problems, etc. I just had my first MS hug…wow sharp pain in the back. And after 18 1/2 years still more excitement with my MS!

Reply

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