PPMS Suddenly and Spontaneously Surges My Symptoms
When I was diagnosed in 2010 with primary progressive multiple sclerosis (PPMS), I didn’t know what to expect. It quickly became apparent that my doctors didn’t know, either. I’m sure they could have given me some scenarios of what my future might be like. But just like the disease itself, the course of progression is unpredictable and unique to each individual.
In my experience, one-way progression can appear as a “subtle decline.” When I first noticed my walking issues about 12 years ago, I could walk unassisted. But if I walked a long distance, I would need to hold on to someone’s arm for support. My progression has taken me to a point in which I need a walker all the time and a wheelchair for longer excursions. Fatigue and leg cramping also are daily occurrences, and I place them into the “subtle decline” category, too.
Another form of progression I have noticed is when a new symptom appears out of nowhere. I can go to bed without the symptom and then wake up with it the next day. My newest “sudden symptom” is a pinched nerve sensation at the base of my neck. It is very annoying and it has me wondering what its objective is.
Another symptom exemplifying the combination of sudden and declining progression is numbness. One morning I awoke with numbness in my toes. Months later, the numbness has progressed to include half of each foot. Stretches help for the short term, but the numbness returns.
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Some of my symptoms can come and go, but the more prevalent ones always stay. As with any faulty wiring, there can be a short that sometimes connects and sometimes doesn’t. That is how it is with my PPMS lesions, as they disrupt the connection between my brain and my spinal cord.
According to U.S. News and World Report, Dr. Timothy Vartanian, director of the Multiple Sclerosis Center at New York’s Weill Cornell Medical Center, tells his patients that “their impression of MS is most likely much worse than the reality of the disease. Although there’s still no cure for the condition, there are treatments and lifestyle changes that can slow its progression.”
The lifestyle changes he suggests include 30 minutes of whichever exercise one can do per day, a “low-glycemic, easily digestible diet,” a sleep hygiene program, and 5,000 IU of vitamin D daily.
I just want to add that awareness of your MS progression can be productive. It allows you to take note of any changes or improvements that may occur. But stressing over progression is counterproductive. Stress is an “arch enemy” of MS and could only make matters worse. We don’t know what our future with MS will be, but no one knows what their future holds. So my advice is to live your best life daily, follow your doctor’s advice, follow healthy suggestions, and most of all, be happy.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Michele Silverman
Hi Debi -
I have been reading your column for some time now. It has helped me tremendously because everyone I know who has MS has relapsing remitting while I have PPMS. I started taking the biotin after reading your column and speaking with my doctor and I feel like it's helping me. I now have a "twinge" in my lower back on my left side which has had no problems. I am doing exercises and stretches and am hoping it's just my sciatica. I stay positive and keep moving forward. I walk most times without a cane especially at home and in my office but do need it if I don't know where I walking. Holding someones hand helps. I had a knee surgery that went wrong - my femor was broken - so that aggravated the MS. I so wish they would find a cure for this. I won't do a pitty party, it's just hard. I've been divorced for a while. Trying to date is rough lol. People are scared. My doctor says my legs don't define the person I am. I guess I just have to find the right person. Thanks for letting me vent :)
Debi Wilson
Hi Michelle! I recognize your name from some of my other columns comments. Thank-you so much for your kind words and for being a reader of my column! I appreciate receiving positive comments such as yours so much. That is what keeps me writing and sharing!
The pain you describe reminds me of what I have experienced before, I have an written an article about it, you may have seen it. But,if not here is the link http://multiplesclerosisnewstoday.com/2017/07/05/ms-patient-debi-wilson-finds-her-latest-symptom-is-sciatic-pain-at-a-whole-new-level/
I am glad the Biotin is helping you. So far I think that is the best thing I’ve tried for my MS.
I’m glad you vented and feel free to vent to me anytime. We have to do that sometimes, so I totally understand!
I am also a moderator the MS forums, http://multiplesclerosisnewstoday.com/forums/ if you haven’t signed up already I hope you do and join us in the discussions. It’s a great place to vent, share and gain new information, I hope to see you there!
Thanks again, Debi
Michele Silverman
Thanks Debi -
I did see that article and just reread it. I forgot to tell you the other day that I had gone for my usual round of tests mid Ocrevus infusions and they call me to tell me there was improvement on my right side!. Not sure if it's the biotin or the Ocrevus but I'll take it. I'm meeting with my neurologist in November so I'll get more feedback. I'll go on and join the forums now. Have an awesome day!!
Debi Wilson
That’s great news, Michele! Any improvement is awesome! And, I’m glad you joined the forums! What is your ID there so I will know it’s you?
Debi
Michele Silverman
Hi Debi - I joined but it doesn't give me an ID - lol is that my username?
Debi Wilson
Yes! ?
Karen
Debbie- thank you for your great column! I always enjoy it.
I also have PPMS and have not started Ocrevus yet.
Michele, I was wondering if you yourself noticed any improvement on your right side or did you only find out when you were told that? I’m wondering if the drug is worth the possible side effects. It sure would be if people with PPMS noticed improvements with their walking. Did this happen for you? Has anyone else with PPMS had walking improvement with Ocrevus? Please share.
Debi Wilson
Thank-you, Karen! I appreciate your kind comments! In our MS forums http://multiplesclerosisnewstoday.com/forums/ under the category “MS Drugs”, there are quite a few topics on Ocrevus and people sharing their experiences. I hope you can join us there! Best to you, Debi
Senator
Hey Michele ! Sorry about your diagnosis of PPMS, because I have it also. Was diagnosed in 2011 and it progressed rapidly. I am in a wheelchair now but make the best of it. I enjoy writing about my experiences and hope it helps people understand MS a little better. I am currently on Ocrevus and started it soon after it was approved by FDA. I have been on for 1 year now and am pleased with results. I recently had an MRI and it showed no increase in activity so I was pleased. It is suppose to slow progression and so far it is with me. Good luck to you !
Debi Wilson
Hi Senator,
That’s great you write, Do you have a blog or freelance? I would love to read your work.
Debi
Michele Silverman
Hi Senator. Thank you. I was diagnosed in 2006 and have been very fortunate that I have maintained myself since then through diet and exercise. It has been a journey lol. I am now on ocrevus as well. So far so good for me too. I'm happy that you are pleased with the results. I am so happy that I found this site and forum. Debi has been a great inspiration to me. Do you have a blog? All the best, Michele
Debi Wilson
Thank-you, Michele!
Tyron
Hi guys I’m glad that I checked this particular newsletter this morning 2am here in Australia. I was diagnosed with PPMS in January this year after several years of trying to find out what was wrong with my back. Some things that have been happening to me over the last 8 or so years are making sense to me now. I’ve a lot of learning to do so glad I checked here this morning. Cheers Tyron
Debi Wilson
Hi Tyron,
Thank-you for your comments! I would like to share with you about our MS forums http://multiplesclerosisnewstoday.com/forums/.
It is a growing MS community,where you can learn more about MS, start topics and ask questions! I hope to see you there, Debi
Judy
I appreciate hearing experiences of someone else with PPMS about the same length of I've been diagnosed. No one knows what it's like better than someone who has it.
Thanks Judy
Debi Wilson
Very true,Judy! Thank-you for your comments! The best to you, Debi
FB
I think that one of the hardest things about any progressive and declining disease is not just the gradually increasing disability but that there is no "new normal" to adjust to - it is a constant succession of new normals. If you lose a leg or an arm in an accident you can eventually get used to life being different - with progressive illnesses there is a "new normal" every few weeks or months and this endless adjustment process and knowing that there will not be any improvements is hard to deal with on an ongoing basis. No wonder PwMS have a high rate of depression - no amount of optimism can compensate for ongoing functional decline.
Debi Wilson
Hi FB,
I agree the progression is the worst. But, how you choose to deal with that is your choice. You can be optimistic or be depressed. I have both types of days, and the days I’m more optimistic I feel a lot better. So I choose to be more optimistic than not. Thanks for your comments! Debi
Judy Crutchfield
How often should a PPMS patient have a MRI done and why?
Debi Wilson
Hi Judy,
When I have had MRI’s has varied with each Neurologist I have had. Most of them recommend having them once a year, just to see if there are any changes. One of the Doctors I saw said the only reason to do an MRI is if you are following a treatment. So I guess it depends on the Doctor. Thanks for your question! Debi
Annie
I just found out about your blog and will be on it, good to share how you feel and how different PPMS is for everyone. I was diagnosed last year at the age of 68, was going to be ok with the new normal; it’s been an emotional rollercoaster but am lucky to have the family support and love and to be on Ocrevus. Thanks for taking the time to share your experiences
Debi Wilson
Hi Annie, Thank-you for taking the time to write and for your kind comments! I’m glad that you have strong family support and able to start Ocrevus soon after your diagnosis. From what I’ve been told, starting treatment early is best. Wishing you the best, Debi
Jo-Ann
Hi
Jo-Ann here from South-Africa. I have just been diagnosed with PPMS. I am so relieved to actually have found a space where people talk about this, its has been and is still a extremely hard thing to explain, loved ones and doctors after all obvious tests still think its a mental problem....i am so frustrated and confused.
I have so many questions and i am so scared of whats coming ? i am sure reading your posts will help so please keep talking.
Jo
Jo-Ann
Hi
Jo-Ann here from South-Africa. I have just been diagnosed with PPMS. I am so relieved to actually have found a space where people talk about this, it has been and is still a extremely hard thing to explain to loved ones and doctors after all obvious tests they still think its a mental problem LOL...Even thought so myself for a while….i am so frustrated and confused.
I have so many questions and i am so scared of whats coming?
I am unfortuanately in a position where my only treatment the Ocrevus is not available in SA yet! So i am left to Gods grace and my fighting spirit.
i am sure reading your posts will help so please keep talking.
Jo