Health Update: Day by Day and Step by Step

[Marco]

I hope everyone is doing well. The MSWorld community is a place for sharing and healing.
This post is not intended to engender sympathy, but to let you know many of us are struggling with MS and more than MS. This is an overdue update to my previous post located here: http://www.msworld.org/forum/showthr...ong-long-month.

• After a multi-decade battle, my dad passed away in November. He is no longer in pain and for that I am extremely grateful. The stress (and spasticity increase) of the event put me back in a wheelchair for 2 weeks. I was able to deliver an eulogy for my father and that was a blessing. That was the third significant death we faced in 2015. There was no remorse when the calendar flipped from 2015 to 2016.

• I spent roughly 6 months without a MS disease modifying therapy. My VA neurologist and I could not agree to a treatment so it's been a battle. A civilian MS specialist has me restarting Tecfidera at the 120 mg dose to determine my tolerance level. Another MS specialist said the 120 mg dose was a waste of my time and wants me on Rituximab. Shortly, I will see a third MS specialist for my final medication review before meeting with my VA neurologist to decide on a long-term treatment. The five options are currently: Aubagio, Lemtrada, Tysabri (JCV+), Rituximab and Tecfidera at the lower 120 MB dose.
• I was told that I should now consider myself to be in the Secondary Progressive MS category!
• I never flushed prior to Tecfidera, but even 6 months after stopping I am still periodically flushing. I have seen two dermatologists and have now been referred to an endocrinologist.

• On December 29th, I had the left vocal cord growth removed and it was benign.

• I had disectomy/laminectomy surgery at L4/L5/S1, but it did not resolve my sciatica type pain. I do not have sciatica, but the right leg pain is similar. On December 21st, I had a spinal stimulator installed and it has provided some relief. I still cannot sit without significant pain, but next week the stimulator will be reprogrammed to try and help. The spinal stimulator is similar to having an internal TENS unit or massager implanted that attempts to "drown out" the pain signals with vibration.

• I am still officially in recovery for another 5 weeks, but I am walking on a daily basis. The walking isn't coming easy as I have dealt with vertigo, balance problems, increased spasticity, gait problems, fatigue, etc. In spite of the problems, I have made steady progress and have walked farther than any point in time since July 2012. I know I only have so much time before the Texas heat roars back and restricts all outdoor activities.

I hope 2016 is kinder for all of us, but we can only take it one day and one step at a time.
Please pay attention to your symptoms and make note of new ones. Keep your medical teams in the loop. Don’t assume everything is MS-related, but don’t rule it out either. Most importantly remember that life is precious and fleeting so focus on the important stuff. I remain grateful for MSWorld and all of the members that improve my daily quality of life. I wish you all well!

[rdmc]

Hey Marco, Thanks for the update. Condolences on the death of your dad.

I have a question about your spinal stimulator. Does that interfere at all with your pump?

I know when I go to the PT, my pump doctor tells them to avoid any tens units, etc. near the pump. But that might be because they're attempting to use it in the same area as the pump. At what level is your spinal stimulator?

Interesting about the different recommendations from each neuro as to treatment. How will you decide which med to go with?

Another question, did the pump present any problems when they did your back surgery? I'm having some back issues myself and there again, it seems they are implying that back surgery was out because of the pump apparatus in my spine.

[Marco]

Thanks, but no worries about my dad. His Quality of Life was terrible and he's no longer in pain. We're people of faith so we do not regard death as being the termination of existence.


My stimulator leads are near L5 (pump leads at T4) to cover the area from my buttocks to upper calf. The spinal stimulator does not interfere with the pump. The stimulator gets installed either in your upper buttocks or on the other side of your abdomen. It's smaller than the pump, but close to the skin surface since you recharge it through the skin. To learn about my rig you can google SureScan Sensor system. That includes the full body MRI and I also have the adaptive stimulation.
The pump did not pose any complications during surgery, but my surgeries were on the other side of my back. It's all technology guided so that helps, but the surgeon told me he allocated an additional 30 minutes in case he had to work around my pump leads.

About the different medications! Well, the neurologist has the prescription pad so that is a limiting factor. The good news is all the neurologists are agreeing with me and disagreeing with him. I want a more aggressive therapy to prevent further damage and he wants me on something safer. He just cannot comprehend why I value Quality of Life over Quantity of Life. If we still cannot come to agreement, I will be starting therapy with a different neurologist. Right now, I am leaning towards Ritxuimab based on the recent test results of Ocrelizumab. One of my recommendations was to go on to Rituximab until Ocrelizumab was available and the one doctor liked that option the best. I am so grateful to still have options with even more on the horizon. I'm still most excited about anti-LINGO-1 and the possibility of repair!!!

[pennstater]

Marco,

So glad to hear from you. I am thrilled that you are getting some pain relief and hoping it continues. It is also a testament to your strength that your walking has improved, despite MS symptoms rearing their ugly head. I am sure it has been difficult.

It is very difficult to deal with major losses in such a short timeframe. I am also sorry to hear of your father's loss. Mine passed quickly at 90 in late October. Mom passed 16 months prior. Both were in extreme pain, but only for a few days, then thankfully, hospice care kicked in. We were blessed.

I can not imagine having to watch your father struggle for 10 years. But it does help, knowing that while we feel the pain of their loss, they no longer feel pain. I also take comfort in knowing I have them looking over me and passing their strength on to me. I continue to look to them for guidance, and when at a low, I feel their presence, helping to pull me out.

Here is to a much better 2016. Toasting you with my cup of tea.

[Tia1]

Hi Marco, I am sorry that you have had to balance so many things lately, including the loss of your dad. It will be wonderful to see him again one day.

I will continue to pray that 2016 brings better health, strength, peace and joy, that you would continue to focus on those things most important and you His light will continue to guide each step and each day.

You continue to inspire and thank you for keeping us updated. We care about you.

[Temagami]

Marco,
You have been so generous with the latest research updates on the forum and I had no clue that you had so much to deal with family and healthwise (in addition to the baseline MS). I hope that 2016 brings you longer walks and less pain.

I have some back exercises that helped with post-surgery at L-5 if you want them.

Thanks for your carpe diem attitude. You missed out on snowmageddon up this way. It provided quite a few photography artsy-fartsy shots.
Take care,
Temagami

[palmtree]

Marco,

I want to express my appreciation for all of your contributions to this site. We had no idea you have been living with such big ticket challenges. Back surgery is enough but with MS on top of it, you are a hero.

I send healing thoughts through cyberspace that your back will heal and you will be pain free.

[frosty123]

condolences

on the loss of your Dad. Peace to you and yours Marco.

[alishape]

Thanks for the update

I know it's hard sometimes to remain positive in the face of all we have to deal with. I just wanted to let you know that we are all pulling for, thinking of, and praying for you. Your posts and replies have brought me through many a hard time. Please know that you have us just like we have had you.

[Seasha]

Marco - I am sorry to hear of the loss of your father. He is at peace now and something to be grateful for.

It seems that 2015 hasn't been a kind year with all the challenges you've faced. I'm praying that 2016 is going to better for you!!

You are such a valued member here. God bless and wishing you wellness.

[REG53]

Marco, I'm sorry you have been going thru so much and then losing your dad. I look forward to reading your post with all the info you share and for that I thank you.

God Bless You and Your Family.

[Jules A]

Thinking of you and wishing you well.

[hunterd]

Marco,
I cannot begin to express my sadness for the loss of your father, you'll have my deepest condolences.
Something that I thought of ( and I am sure that doctors have thought of this) is the possibility of using Lyrica to combat your leg pain. I know that I was forced to use Lyrica as a way to keep my leg pain tolerable. May you have as much success as I did with it.
As always, my thoughts and prayers are with you.

[AriD]

My thoughts and prayers are with you Marco as you cope with so many physical and emotional events in your life. Your advice and wealth of information has always been appreciated. I hope things at least calm down for you but mostly hope they get better. Take care.

[Marco]

Thanks everyone! I am doing well and see all of this as being temporary. I too hope that 2016 is kinder and gentler, but I'm just taking it one day at a time. I know how quickly life can take a detour for better or worse. I'm just glad we have a safe place to share.

I want other members to know that they are not alone, but this community will laugh, cry, celebrate and mourn with them. I wish everyone well!!!