Massachusetts Moms!!

MassachusettsDid you know that we have a lot of local groups on the site for different states and countries? We added another one! This one is for Massachusetts Moms with MS, I can only imagine with all the excitement going on in Boston it might be nice to be able to connect online!

So if you are a Mom with MS in Massachusetts the group is now here!

Our local groups on MomsWithMS.com are for moms to both get and provide peer support and recommendations to what is or isn’t working for them (doctors, pharmacies, etc.) and maybe even coordinate some events to get together locally or via phone/internet!

Please note that to access the group you must be a member of our private MomsWithMS.com site. If you are not a member you will be prompted to create an account and will have to wait for it to be approved before accessing the site, so be sure to fill out all the questions!

Texas Moms!!

Did you know that we have a lot of local groups on the site for different states and countries? We added another one, for Texas Moms with MS yesterday and we’re aiming to promote one group a week or so, for the groups that already exist and also as we create the ones that are needed!

So if you are a Mom with MS in Texas the group is now here!

Our local groups on MomsWithMS.com are for moms to both get and provide peer support and recommendations to what is or isn’t working for them (doctors, pharmacies, etc.) and maybe even coordinate some events to get together locally or via phone/internet!

Please note that to access the group you must be a member of our private MomsWithMS.com site. If you are not a member you will be prompted to create an account and will have to wait for it to be approved before accessing the site, so be sure to fill out all the questions!

7mo After HSCT

Home 7 months post

Three week ago I was preparing a much different post for all of you. It was a post about my MS returning…

HSCT Journey

Last I posted in December I was sick with a horrible bout of sinusitis. I had been warned it is not uncommon for old symptoms to return during illness post HSCT but this felt different.

My leg which was effected by damage caused by MS prior to treatment was stiff and became even more stiff over a span of two weeks, my right arm became weak, my vision in my right eye became doubled. After a second round of antibiotics my sinusitis was gone but these symptoms continued to worsen. Panic slowly set in that my MS had returned. It just didn’t add up, it felt similar to how I felt prior to HSCT but not exactly the same, I noticed they were worse in the morning but improved throughout the day (total opposite of MS), I had no fatigue, I had no tingling or numbness.

After a week of this with no sign of infection the realization that MS may be creeping its way back became a reality as my vision blurred more and my weakness became more dominate in my arm. I spoke with Dr Burt’s office who arranged for me to come out to be evaluated as soon as possible to figure out what was wrong, However the day after I spoke to them everything changed….

I went to visit my Ear Nose Throat specialist in hopes she could confirm or rule out a sinus infection for certain. After a CT scan of my sinuses, infection was ruled out. After her I visited the eye specialist that has treated me for optical neuritis for the past 4 years for his opinion on my vision. After an extensive exam and new visual field testing he assured me this was not optical neuritis and my vision had improved greatly since HSCT. He assured me this was not MS related but unsure of what could be causing the double vision. Frustrated, panicked and overwhelmed I felt the best hands for me to be in were in Chicago with Dr Burt and his team until that night I spoke with a friend who is a pharmacist about what was going on. I mentioned that I had been on synthroid in our conversation at which point she told me to contact my doctors immediately about rare serious side effects caused by synthroid….

After some blood work and stopping the medication synthroid was determined as the culprit for my current issues at the time.

I had been on synthroid for hypothyroidism since September, I had a few issues with the dosing, it had to be lowered frequently but once I reached a low dose it worked well for me (or so I thought). My reaction to the synthroid was masked by the sinusitis for almost 3 weeks, what I thought was sinusitis bringing back old things was actually a reaction to synthroid that was building up slowly but horribly.

After stopping synthroid 14 days ago I have completely stabilized with all of my similar to MS symptoms slowly disappearing. My vision improved almost immediately after stopping the medication and is now about 95% back to normal.

Scared is not the word to describe how I have felt the last few weeks…

Today I am happy to report I am seeing the true gains of my strength and endurance post HSCT (and post synthroid). Today I went grocery shopping, took my toddler to a music class, did homework with my kindergartener after picking her up from school, made dinner then did something that was just a dream a year ago.. Took my two amazing children to the playground to play….

My MS is still gone.

While going through this situation and now feeling better it really made me see how much my quality of life has improved. As I have said before my biggest and only regret is not having HSCT done sooner.

I have a long way to go strengthening my leg that MS destroyed. Although big issues, my leg and a bit of balance issues are the only daily reminders that I ever even had MS. I am confident that this was a speed bump in my journey of the beginning of my new life… Life after MS

Post originally appeared on Heathers HSCT Journey page on Facebook, republished here with permission.

From Denial to Supported

LoveyIt started with a car accident on my way to work. I go in to see the Dr. about the pain for several weeks and realize I’m starting to lose my vision in my left eye. Am I going blind from a concussion? What’s happening to me? I visit an eye Dr who says, no.. I can’t see anything, see a Neurologist. My first visit to the Neuro said that I had optic neuritis and she mentions MS but wants to do an MRI and spinal tap to be 100% sure. I had never heard of MS before and was in complete denial that I could have a disease like that anyways. But after researching, going through the stages of grieving, I finally accepted that this was going to be my life from now on.

Not one to keep things to myself, I told friends, family, church family, found support groups and immediately begin to surround myself with others who had been in my shoes and knew what I was experiencing and could support me. Friends who didn’t understand or I felt pulled me down, I let go of and filled their vacancies with positive friends. 

I lost my job and not wanting to remain depressed I took up crocheting for friends and family and even made a mini business out of it. It is a way to ease my mind while being creative at the same time. I started volunteering to help others and give back to those who have helped me. 

As a mom I face the struggle balancing children while trying to save my “spoons” and sanity. I try daily to run a stress free home and with 3 boys-that’s not happening anytime soon, but we do our best.  

My advice to you, be patient with yourself and don’t be afraid to tell other so that they can support you. There you will find strength to make it through each day. Out children are our biggest fans so include them in your healing process and lifestyle changes. They will in their own way let you know they care- even if it’s just with a kiss.

I was diagnosed with MS in 1977

I was first diagnosed with MS in 1977 via a spinal tap. I am now 73 years young, am ambulatory and currently the only MS medication I am on is Baclafan. I have had Avanox (made me very sick so took me off) then was put on Copaxone. Did very well on it for years till the co-pay suddenly rose to oer $467 a month an I couldn’t afford it so my MS Neuro doc took me off it and everything else except the Baclafan. I am doing ok but the fatigue factor really gets to me. Then last March 4th my dear husband passed away suddenly of a heart attack. When that happened I was in the hospital with an intestional blockage. Since then life has been a horrible struggle. I have my house up for sale in hopes of moving to the Phoenix/Sun City area to be near my only daughter from Washington state. I’ll shut up cuz this is longer then I intended and don’t want to bore you.

Blessings,

Bobbi

Are You a Mom with MS With a Story to Tell?

MomsWithMSHello, my name is Kristin and I created the MomsWithMS.org community about 5 years ago. I felt like I both knew things that I wanted other moms to know, and also I had a LOT of questions that I wanted to ask other moms. The private online community has now been active for a long time, and I and over 1,000 other moms now do have a place that we can go to ask questions, but is the problem solved?

In my opinion No. As you and I both know, there are more and more people being diagnosed with MS every day, and a lot of those people getting diagnosed are either moms or potential moms to be. I know this because we are still getting new members every week who are recently diagnosed. This tells me that despite the blogs I see popping up by other moms with MS, and the support groups I’m seeing in other places there is still a need out there.

SO I want to offer to you, whether you have a blog or not, the opportunity to share whatever it is that you would like to share with the world. You can do this via the Share my Story link in the menu above this blog post.

You can choose to share your identity (or to stay anonymous) as you choose.

If you do have a blog, you are welcome to post an intro with a link that links to your post on your own site and/or include a link to your blog.

I hope you take this opportunity to share with the world the story that you hiding inside of you! Every story will be shared via both Facebook and Twitter where we reach a lot of people, if you are interested in specific numbers or have any questions for me please comment below and I will reply.