MS, Mammograms and Self Advocating
I recently went to the hospital for my routine annual mammogram and what should have been an uneventful test turned into quite the fiasco. The test which normally takes about 15 minutes took me well over an hour.
My wheelchair which elevates, reclines, and even stands could not easily position me in the optimal place. As a result, the films came back inconclusive and we had to repeat the whole test over again. The technicians, who remembered me from the year before, could see that I was getting really worn out and that holding my arms up for an hour was becoming very difficult.
The whole process was once again very exhausting and somewhat embarrassing. I am the person who never likes to complain to her doctor. Only this time, it paid off to be honest with her. After a short conversation with her she simply told me that I did not need to have an annual mammogram anymore. Instead, she would order an annual breast screening MRI. After several years of angst and mammograms, it only took my doctor a few short minutes to solve my problem.
While this story is somewhat awkward for me to tell, it reminds me that some problems have a simple solution and that it all starts with a conversation.
Since returning to work in January after recovering from mono, the past few months have been crazy busy for me. I haven’t even had time to think about MS…which has been great! If you would have asked me this time last year how I thought MS was treating me and my thoughts on the future it wouldn’t sound like it does now. A year ago I probably would’ve said “Yeah, well it’s slowly progressing, it sucks walking with a cane and all of these braces but…” These days thanks to my diet and Bioness I’m going stronger than ever.
First things first, going Paleo and since then moving on to the Wahls Protocol has entirely changed my life for the better. If I could give any MSer one piece of advice it would be to drop what you’re eating and pick up a paleo cookbook. Over the past six months I have dropped 40 pounds and gained my life back. No longer am I sluggish as soon as I wake up, I can even stay up past 8 pm! Seriously, dump your junk food and start getting your life back.
Along with the change in diet I have also been using a Bioness L300 Plus electronic foot drop system to combat weakness in my left side. This has been simply amazing, I now have the ability to walk normally again! If you have the opportunity to get your hands on a Bioness system give it a whirl and see if it works for you. This system isn’t cheap but if it works for you, you will find a way. People like to donate to a worthy cause, especially for an electronic robo leg that will help you walk.
None of this has been easy, I have worked very hard to become healthy again, but it has been well worth it. Do it, read up and start making the changes that you can, this is attainable. Send me an email if you need some encouraging words or if you want to know how I gave up sweets! Fight on!!
Be a Warrior Today,
MS Patient, Ph.D.: When Old Symptoms Resurface Pseudoexacerbations might not cause new nerve damage, but quality of life means more than just disease progression
Written by Griselda Zuccarino-Catania (republished from MSDF)
It wasn’t my first time going out to lunch with my 2-month-old daughter, but it was the first time I wouldn’t finish the meal. I had mastered breastfeeding her in public, or so I thought. However, she decided on this occasion to cry inconsolably when I tried to do so. She was so hungry, but nothing I was trying in that restaurant chair (unlike on the cozy couch at home) was working. My husband and I were so uncomfortable, not wanting to cause a scene, that we left the restaurant.
Sure, this is not an unusual scene for any new parent, but by the time I got home, I was so stressed that I had tingling sensations all throughout my back and down my legs and feet. Three hours later and it was gone.
An MS patient learns to live with these pseudoexacerbations. It could be a long day at work, where the fatigue brings on a bit of an old symptom. Or a hot day spent trying to seek shelter while also being sociable. For one reason or another, stress, fatigue, and heat can all trigger these old symptoms, but they never last more than a day or so. Something about these triggers makes nerve conduction in our damaged nerves not work as well. But no new damage is being done, so there are few studies about this phenomenon and even fewer things that we, as patients, can do about them.
I thought about my experience as I read a recent paper in which the researchers did not find that people with major stressful life events had a higher chance of having MS (Nielsen et al., 2014). So it’s not that these events caused you to have MS, but older research shows that if you do have them, the likelihood of an exacerbation (a real symptom) is higher (Mohr et al., 2004). Newer research also shows that a positive stressful experience can be protective, whereas a negative one was linked to increased lesions (Burns et al., 2014).
Historically, the main advice to MS patients is to just not trigger your pseudoexacerbations. The very trendy mindfulness-based and other stress-relieving therapies have been shown to improve quality of life in MS patients (Lovera and Reza, 2013), so maybe I should take that meditation class that my yoga studio keeps advertising.
However, I would also like to see more studies being done to investigate pseudoexacerbations, an issue that affects me on a day-to-day basis the most. Even though there is no new nerve damage when I experience a pseudoexacerbation, the damage that is already done is creating enough problems on its own. A treatment to reduce the frequency of these events would be a huge improvement to my quality of life, since without one I have a daily reminder that I have MS. And as much as I can try to stay cool (both in temperature and temperament), I can’t always predict when life will necessitate otherwise.
Read other MS Patient, Ph.D. blog posts.
References Major stressful life events in adulthood and risk of multiple sclerosis. Nielsen N M, Bager P, Simonsen J, Hviid A, Stenager E, Brønnum-Hansen H, Koch-Henriksen N, Frisch M J Neurol Neurosurg Psychiatry. 2014 Mar 7. PMID: 24610940. Abstract Editors' Pick Do positive or negative stressful events predict the development of new brain lesions in people with multiple sclerosis? Burns MN, Nawacki E, Kwasny MJ, Pelletier D, Mohr DC Psychol Med. 2013 May 17:1-11. PMID: 23680407. Abstract See Full ListCategory: PeopleDOI: doi/10.7493/msdf.10.10456.1
Written by Griselda Zuccarino-Catania (reprinted from MS Discovery Forum)
One of the first people I told that I was pregnant, aside from my parents and in-laws, was my doctor. Of course you expect to tell your obstetrician (OB), or at least ask them to confirm the home pregnancy test. But most women outside of the MS community, I presume, would be surprised to be discussing reproductive health with a neurologist.
In fact, we had already had a conversation months earlier, even before I talked to my OB about it, about planning the discontinuation of my disease-modifying therapy (DMT) before trying to conceive. We talked in-depth about keeping track of my health sans DMT, timing the next visit and whether an MRI would be taken before then. Luckily, I got pregnant right away, so my worries about having a new relapse while off DMT and before the mysterious protective effects of pregnancy kicked in didn't come to fruition.
Early on after my diagnosis, I had been comforted by the fact that I could expect a standard pregnancy. My OBs didn't seem to be aware of this fact. And maybe they aren’t, since the major shift in recommendation about MS women becoming pregnant only happened 16 years ago, when the Pregnancy and Multiple Sclerosis study results were first published (Confavreux et al., 1998). Rather, they seemed especially intimidated by me as a patient, even though I had only experienced one sensory relapse and was otherwise pretty healthy. (Read: I'm sure there are other patients to worry more about.)
My OB was so anxious about me that he pushed me to have a consult with the anesthesiologist ahead of time, possibly due to outdated research (Bader et al., 1988) that had correlated high concentrations of anesthetic with increased relapse rate. This was not necessary since epidurals don’t affect the rate of relapse (Confavreux et al., 1998) or cause any specific issues in patients with MS. Reassured that there were negligible risks versus the general population, I ended up just talking to them on the phone about my own concerns about an epidural, which were unrelated to the fact that I have MS.
I also saw a fetal medicine specialist at the request of my concerned OB, which basically flagged my pregnancy as “high-risk.” This specialist did more ultrasounds than normal but also wasn't terribly concerned with my MS, although she warned me that there was a higher chance of me having a cesarean section, which is somewhat controversial (Lu et al., 2013) but didn't happen to me anyway. In the end, I had a lot more office visits and extra tests than a standard pregnancy would require—which added to the cost of healthcare and the amount of time that I had to take to go to the extra visits. There's more I can say about my pregnancy and breastfeeding experiences, but I'll leave that for another post.
I will say, I'm pretty happy with how supportive my neurologists were about me having a baby—and, of course, the research supports this stance (Vikusic and Confavreux, 2006) They kept me relaxed during the pregnancy, especially when I repeatedly asked what to do if I had a relapse while pregnant. (Short answer: We will cross that bridge when we come to it; it will depend a lot on all the variables.)
Instead of offering the same support that my neurologists did, my OB seemed pretty uneasy about seeing a pregnant lady with MS—not something that was comforting as an already paranoid first-time mother. This is unfortunate since as infrequent as MS is in the total population, it emerges in women of childbearing age the most often. I was not impressed by the lack of knowledge or, at best, outdated knowledge from my OB about pregnancy with MS. The easiest (quickest?) solution for this issue might be for neurologists to take a more proactive and holistic approach with their patient by contacting a patient’s OB to calm their fears and address their concerns.
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