Hi and welcome to MS Strength. My name is Jen and this is my multiple sclerosis website. I feel like living with MS is so complicated that sometimes I need to write about my frustrations, my worries, my discoveries, as well as about my victories and great moments. And there are a lot of great moments. This website is not meant to be a source for a lot of self-pitying. I realize that some people with MS have far easier courses than mine, and many have far worse. This is more for logging the ups and downs of having the disease which I’m sure, if you have it, you know all about. It’s also for you, the reader, to relate and comment with your own stories, whether they are similar or far different. And it’s for the loved ones of those with multiple sclerosis, because they are also strapped in for the roller coaster ride, whether they like it or not. Bless them!
***Have a look around: Categories are to the right of this home page. Hope you can relate and that you find some of this information helpful. Although we are all different with our individual conditions, we are all united in the MS experience.***
About my Multiple Sclerosis
I am a 43 year old woman who has had MS for over 16 years. I believe myself to be the “average” patient, at least statistically. I realize there is no exact standard for this disease, since it varies so much from patient to patient. Nevertheless, I am female (in the majority), the disease started in my late twenties (very common decade for onset), I have the relapsing/remitting variety (the most common type), and at the present time I have a moderate course of the disease…. I’ve also managed over five years relapse-free– until quite recently– possibly due to my taking one of the disease-modifying medications. However, I still have day-to-day symptoms and struggles, much like other patients.
About my Education and Career
I have a BA in English and have worked in the health/public service fields for more than a decade. For two years I was an Americorps service worker (considered the domestic Peace Corps), where I worked in conjunction with Habitat for Humanity, Meals on Wheels, and Adopt a Highway, and I provided services at a local food bank and area soup kitchens. One of my favorite affiliations was with a county park, where we helped maintain their greenhouse and planted a large flower garden for the public.
I then trained and became a registered ultrasound technologist, because aside from writing, I’m very fascinated with the health sciences and I like helping people. I worked full-time for several years, and did a “stat” call after hours for a local rehab hospital. Loved the senior patients there. At this point my MS symptoms were becoming more apparent, although I still didn’t know exactly what was going on. I was fatigued so I reduced my hours to part-time and this seemed to help. But I knew in my heart that this fast-paced, on-my-feet career would eventually wear me out.
At this point I began to volunteer at an area library. I absolutely loved it. This field seemed to marry two of my biggest passions: helping people locate creative works. They hired me as an assistant and I was there for about two years, but I had my first big attack— double vision in my left eye for eight weeks. Eventually I stopped working outside of the home and I did seasonal telecommuting work through a vocational rehabilitation program for two years, helping people find and order forms and publications through the Internal Revenue Service.
More recently I’ve contributed articles to South Jersey Mom’s health section and I’m a former feature columnist for the Suite101.com’s Women’s Health section. My last online work for EMD Serono pharmaceuticals involved writing and videotaping segments about my life with MS for their website: www.HowIFightMS.com. I’ve worked part-time and interned at a local mental health agency for nearly three years now, as I complete a graduate social work program (MSW) in order to aid people with disabilities on a more professional level.
I love your website.
I just turned 52; diagnosed 1 1/2 yrs ago. I am out of work due to cognitive dysfunction and fatigue. I loved my career – was also in health systems.
Two I am happy about for you:
1. You remain motivated.
2. You have done a wonderful thing for others with MS by putting this website together.
By the way, you are motivated…
Thanks for commenting, Janice. It’s always nice to hear from the folks who read— it makes me feel really great…..I have fatigue and problems with bladder/bowel and balance as continual issues (during remissions.) Overall, I’m doing fairly well. I started this site because I love to write and I have experience with and enjoy the health topics, so writing about MS and my adventures seemed like a no-brainer.
I wish you lots of luck and good health during your MS journey and hope to talk to you again soon!…
i’m on twitter and facebook – how do I follow you at those sites? I have not been diagnosed with MS and have been sick for almost 2 decades. It didn’t show up on my spinal tap in 1998 and I will never go through that test again. Nothing has shown up on brain MRIs but I haven’t had one of those in about 4 or 5 years. There is a small cystic lesion in the paraverteral region but don’t think that’s part of MS. When I was younger, I had abnormal EEGs but was never followed up on.
I went to the internist today for pre-op visit and he noted that i have nystagmus of the eyes and is sending me to an MS clinic just to shut me up I guess. I have a list of symptoms a mile long that come and go and then reappear again and swear I have MS.
Thanks for all the information you’ve provided so far.
Thanks for writing. Hopefully a neurologist at the MS clinic will send you for new MRIs. Yeah, I also have some strange little cyst in my brain (just an “incidental” my neurologist told me. I think its actual name is a “pineal cyst.” I think…) It took forever for me to get diagnosed because I had few lesions— only several on my cervical spinal cord—and I had a bout of Lyme disease which threw everything off.
Good luck with the MS clinic. Hopefully they can make sense of all of it. You can look MS Strength up on Facebook: http://apps.facebook.com/blognetworks/blog/ms_strength/
*****I don’t Twitter ’cause I already do enough procrastinating on FB—LOL…
I’m part of the minority (males) who was also diagnosed late in life. I’m currently 53 and was diagnosed just before Christmas in 2007.
I probably had MS for a much longer period but a serious rollover auto accident back in 2000 and the physical aftermath hid the real cause for a slowly developing limp and my mobility issues.
I’m lucky enough to still be working at the same job I have had for over 36 years but am also worried about the future. I came out of the MS closet just before last Christmas to two upper management co-workers and shared my condition with two more this past week.
Kudos on your web-site! I have booked marked it and look forward to visiting it regularly as a resource. As my condition changes I am starting to go back in the research mode to educate myself.
It’s obvious you are a glass half full lady and I believe that helps. My motto which I told my bosses when I shared my condition with themwas… I still had a great head on my shoulders and I could still get across the room when needed… it was just going to take me a little longer in the future.
Thanks for commenting, Bruce. Sounds like you’re a “glass half full” kinda person too. Best of luck with your job. “Coming out” can be very scary, but it sounds like your peeps are supportive- GOOD!
Thank you also for reading!
This site is great! Thanks for finding me! I belong to an MS group that meets on the 4th Friday of each month and will happily pass your url along! Oh yea the meeting is right in Toms River if you are interested.
Jill mentioned you a while back and then I saw your post on FB, so I remembered about you. I’m glad you’re enjoying my site and would definitely appreciate your passing the URL along. Let me contact you on FB because I DO actually want to go to an in-person support group. I think it’s time!
hello to you…. do you know of any jobs that I can do at home I have MS
I have worked for NTI (the National Telecommuting Institute), which lists at-home work for people with disabilities. They’re out of Boston and they’re a non-profit: http://www.nticentral.org
Also: http://www.alpineaccess.com (has online customer service jobs.)
Hope this helps!
I’ve enjoyed reading your site. Lots of helpful info. I am a 47 yr old female, recently diagnosed (in October) after having my first(?) episode which started in July (still haven’t completely recovered). In hind-sight I most likely had other MS symptoms/issues at various points during my life. I also have osteoarthritis (bone-on-bone) in both knees. However, I am still mobile, still working full-time, and feel I have much to be thankful for in my life.
I’m so glad you’re out and working and that you have such a positive attitude, Dreamer (and I also love your screen name ;).) Thank you for reading and much luck to you, although I think your attitude itself will take you far!
Hi! My name is Laina Turner-Molaski and I am an advocate for raising awareness for Multiple Sclerosis. My mother suffered for the disease and I am committed to raising awareness so we can work toward finding more ways to fight this disease.
I have an initiative called The MS Project. It’s a book, website, and iPhone app. The official launch is March 14th, 2011 to coincide with National MS week but I am working on building up the website now. I would love to have you do a guest post or spotlight you and your blog on The MS Project site.
You can check out the site at http://www.themsproject.com and if interested please email me at email@example.com
This is really great information, thanks for sharing your knowledge and experiences! I was diagnosed with MS in September 2010 and recently started blogging about it at http://optimisticwithms.blogspot.com/
Please check it out – I’d love your input!
Thanks so much for site, Jen. I’m 22 years-old and was recently diagnosed (3 days ago). Still trying to cope and any advice you have would be much appreciated!
If you come back here, you can email me– firstname.lastname@example.org
– and I can be more thorough. : ) But if not, my best advice is for you to hold onto yourself, because YOU keep YOU going. It’s easy to get very down-in-the-dumps during attacks. I find my best way of coping is to have a sense of humor and to keep in mind that things can always be worse(such as living in Japan during this radiation aftermath.) And maybe I would suggest doing whatever it takes for you to stay active, whether it’s exercise, good nutrition, plenty of rest, or an altered work schedule.
I hope this helps you a little and I also wish the best for you. : )
Sorry about my lack of visits.
Spike’s, our dog, illness, quick death and being so ill jan/feb to march meant no visits
Since then I have been spending more time sitting in my wheelchair so I have also not been visiting.
Tonight I decided to visit, I am glad I did.
I just passed by to say hello.
I hope you are doing well.
What a great website! rich with resources. Really happy to see a section on exercise. I find it very helpful.
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Volunteering makes one happy….your writing is talented so keep it up
Hi i have been ill since july 2011 but no diagnosis. My symptoms include headaches, blurry vision,numbness on face arms & legs, sharp shooting,pins and needle pains on arms and legs,burning sensation on legs. I had both CT scan & MRI scan done all came back normal. Can anyone share how they got diagnosed pls help?
I was correctly diagnosed after seven years of symptoms, similar to your own. Things that clinched the diagnosis were lesions on nerves in my brain and in my spinal column (scarring of the protective myelin nerve coverings), spinal taps that indicated MS, and the symptoms themselves.
Sometimes it takes a while for the damage to show up on MRIs or in spinal taps. I hope that you get a correct diagnosis in the near future and that if it IS MS, you fare well (it’s very possible.)
Thank you for commenting.
Hi Jen –
I am a freelance writer working on an article for the MS Society’s Momentum magazine, about the basics of financial planning with MS.
I need to interview a few people who have MS to gather anecdotes in their own financial plans, ups and downs, lessons learned etc. I’m not looking for expertise, but just rather personal experiences. (I have also interviewed financial planners).
Would you be interested in doing an interview next week?
You can shoot me an email or call 303.570.5679
Thanks and I hope to hear from you soon.
I was searching to see what I can do with my free time and came across your website. I’m a 28 year old female with MS. I was diagnosed back in 2005 after waking up and seeing a spot on peoples faces. Didn’t pay too much mind to it but after using eye drops and seeing that didn’t help to clear my vision I ended in the ER. There I found out it was something serious and by the end of the day I didn’t see anything at all through my right eye. The next day a bunch of doctors came in to the room and told me the bad news. So I stayed in the hospital for a week. After that in 2009 I had another flair-up this one was worst because my whole right side of my body was weak. This is when I also had foot-Drop and had to use a brace and walker. That’s when I realized life would never be the same. In 2011 I had another with my vision this time was my good eye my left eye. I saw blurry when I looked at you so having the right eye messed up from back in 2005 I went to the ER ASAP got admitted right away and was on steroids for 3days and that helped a lot!everything has been normal except for the walking and how I’m only able to walk 2 full blocks til I start to drag my foot so I rather just stay home. I have great friends that drive so when they have time we go out to have dinner and just catch up. My mom and sis are great they help me out a lot. I went from taking AVONEX to REBIF to what I’m taking now which is COPAXONE. I try to stay positive but its hard when I’m an extremely shy and scared girl that has closed up and hasn’t reached out to support groups or anyone with MS.
Ok wow that’s a lot of writing. That felt good letting it out. Thank you for having this site available to us all. So if you have any suggestions on what I’d be able to try please let me know. Also I think what has me cooped up is the fact that I come from a spanish home and they still I feel don’t understand what it is I have. Ok thank you!
Wow— you’ve been through a lot! I’m glad you reached out to me and to anyone who might read your post. Have you ever thought of trying an exercise class for those with MS? They tend to be good for strengthening and maintaining balance. Plus they are challenging but also geared for any impairments that students might have. Also, maybe ask your neurologist if you could try some physical therapy? I’m not sure if you’ve done this already. The exercise class might be a good option because it could help you with your walking and it might provide some socialization with other MSers. A way to find out about local exercise classes would be to go to the National MS Society’s website and put in your zip code for “Find a Chapter” at the top of the homepage. Many local chapters have newsletters with this information. And they list support groups, if you think this is what you might want.
Thank you for reading and if you have any other questions or need more information, you can feel free to email me at email@example.com.
Jen : )
Thank you for replying to my post! Thank you for all the info and the email address. I didn’t know the nursing homes by my place offered exercise classes for people with MS. Ill try to go this week. Ok thank you again and if I have anymore questions ill be sure to email you. Take care!;-)
You are most welcome, Laura. : ) Good luck!
I have been dealing with MS symptoms for over a year now and have only received a diagnosis of probable MS so far. Due to the spinal tap was good and the spinal MRI was clean. The brain MRI showed nine or more lesions with only two that actually concerned him. The largest and worst one being on my brain stem. I am having severe cognitive issues with memory and concentration. I recently lost my job as an MA at the office that actually sent me to my neurologist for these symptoms. Now my neurologist has taken me off work indefinitely due to this. All this stress with losing my job, my insurance, not qualifying for assistance has thrown me into an exacerbation and I am now on high dose steroids which seem to help some but now I can barely walk as the inflammtion goes down. I have filed for disability. Any help?
I have actually been dealing with MS symptoms such as memory loss, concentration problems, urinary/bowel problems, joint pain, shaky hands, numbness in extremities and knees, depression, etc. For many years. I just kept passing them off as being overworked caused I have always worked hard, strenuous jobs. I have also suffered from severe migraines for many years. I just don’t know where to go from here.
I am so sorry you are going through all of this. I had a similar “perfect storm” when I had a bad flare, lost my job, and had to deal with the applying for assistance. My best advice to you is to get a good disability lawyer if you are applying for social security disability insurance (SSDI.) A legitimate one will not charge you up front, and will take a percentage of your SSDI backpay only if he or she wins your case. It’s very tricky to maneuver through the SSDI maze without representation. A way to find a disability lawyer would be to contact your local MS Society chapter. To access this via the web: http://www.nationalmssociety.org/find-a-chapter/index.aspx
I think it’s a matter of just persisting, even when you don’t have any desire to. It’s tough to get motivated, but with supports life can be manageable and worth the effort. Dianna— I will send you a private email. Have been in similar shoes and I always believe there is a way back. Just reaching out here is a great start.
I was diagnosed 3 years ago at age 36. I have been through Copaxone for a year then Rebif for two. I came off the Rebif due to increasing side affects and overall terrible feeling. I am not symptomatic at this time and will be starting Gilenya and LDN. My doc was nervous just putting me on just the LDN because of the lack of studies. I still work full time 12 hour shifts and have a wonderful husband and two amazing children. Its been a long three years ajusting to multiple medications but I feel my positive outlook on life and family support has helped tremendously. I really like this websight and I’m glad I came across it. I would love to know of anyone who has taken these two medications together or seperatly and how that went. Thank you.
I like your website. I was diagnosed with MS in June 2012 and I believe I am somewhat in the denial stage. Part of me knows that I have MS and the other part believes that the neurologists have made a mistake. I started disease modifying therapy a week ago. I was in the midst of a career change. I was tired of my current job and decided to go back to school in the field of Human Resources in May of 2011. I had a really bad attack that affected my balance, coordination and the whole left side of me felt odd and my left hand felt asleep for weeks. The problems began in April 2012. I have gotten better but I have not completely recovered. I took the summer off college as I knew something was wrong but did not know what. I have decided that I was fortunate to be half way through my Human Resources certificate and I continued this fall. Being in school again really gets my mind off of MS and gives me hope for the future. I will not let this disease ruin my future goals.
Hi. I found your site linked with an email that my mother-in-law sent to me. I was diagnosed 10 years ago and was determined to “kick” this disease. I thought I had been very successful until 6 weeks ago. I woke up with a strange feeling in my legs. It felt like a rash developing. But two days later I could barely walk. I had the “pins and needles” thing going on in both legs from my hips to my feet. It has not gone away and is getting progressively worse. It is difficult to work (I am a teacher) and I love my job! Neurologists tell me there is really nothing more we can do right now. I have MS and these things happen. I take Gylenia and went on a three day treatment of IV steroids followed by oral steroids. NOTHING!!! I am frustrated and scared. I wanted to take the advice to find a support group just to vent if nothing else. I know others can’t understand the feeling. I try to go about my daily life without calling attention to my pain. Now it is getting very difficult. Thanks for listening.
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Thanks Jen for your insight to this horrible disease. I was diagnosed with MS a yr ago and have been having a hard time with it for this past year. I have been angry depressed hurt that my body has gone on total revolt on me. I once was a very active lady with family volunteering at the schools where my children went, Red Cross and others , but now I am a homebound lady and going crazy with a very extreme case of cabin fever and not knowing what to do about it. Any advice would be greatly appreciated. Thanks for listening to me.
I’m sorry that you’re going through this whole ordeal. I do find myself repeatedly adjusting to the bodily and cognitive changes that MS throws at me. I recently had a major relapse– February through April of this year– and I found myself, again, home and depressed. What I find helpful for me is to try to volunteer in very small increments, say 2- 3 hours at a time. I’ve done this at a local hospital in the past, where I was able to sit at an information desk and greet people. If you don’t feel like you are up for this, maybe you can try getting out to activities at your local library? They tend to be an hour at a time, such as hobby groups and reading clubs or slightly longer movie presentations. Another idea could be to schedule visits with friends, whether you are able to meet out with them or have them come and see you. I know the detriments of being isolated in the home and even short visits with loved ones can make a huge difference in overall emotional functioning. And perhaps one other idea might be to join an online or in-person support group, such as those found through the Nat’l MS Society (assuming that you live in the United States): http://www.nationalmssociety.org/Resources-Support/Find-Support.
I hope this helps you to positively connect with others. I’m not going to say it’s been easy, but as you go along you’ll begin to find social supports that work for you. You can also email me privately at firstname.lastname@example.org.
Thank you for reaching out.
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