Diagnosed January 2016 - MSRR

[JoniJohn]

Now that I know, now that I have a diagnosis, my journey on this path begins. It was not easy to arrive at this and involved lots of time and trouble, but I am glad to actually know what the problem has been and now, to begin to answer it appropriately. This is my "New Normal".

About Diagnosis:

I was diagnosed with a sleep disorder and given NuVigil, 4 years ago. I was able to work and if I rested enough, I did not have overwhelming episodes of weakness and fatigue. When my records were reviewed this year due to my increasing fatigue and muscle weakness, including falls and dropping things, my new G.P. said this is neurological disease. He ordered blood work. The results inducated to him, either myasthenia gravis or MS. He sent me to a Neurologist, specialist in MS. I had MRI's of head, neck, spine and more blood work. Finally, the spinal tap was done, at my request. It showed 5 well defined Oligoclonal Bands. It was then conclusive. I have MS - Relapsing Remitting.

I was having increasing difficulty getting through my work day. I was throwing freight and stocking a section of a retail store. I was handling heavy boxes and walking extensively for 8 solid hours. I was on the night shift. So my life was work, sleep and eat. I got up at midnight to arrive to work at 1 am. I worked until 9:30 am. I came home and slept. When I got up, it was nearly time for dinner. I had dinner at 5 pm and went to be again at 6:30 pm. I took NuVigil at midnight so that it was working by the time I started to work.
After 12 months of this, my body was dragging, weak and I was having trouble walking. I had a fall at work that I could not explain. They kept asking me if I was dizzy. NO. I did not know why my legs gave out. It was the physical therapist that notices that I was only walking on my heels. He said there is something going on with my muscles. I went to my G.P. (general practitioner, MD)

At that point, I was starting to see spasms in my hands and starting to have real trouble walking. He recommended walking sticks. The doctor called me at work and said it looks like probable MS. I was given FMLA leave to work the problem. Due to my fall, I requested time off because I was concerned for safety at work. With rest, I am feeling much better with fewer problems. As soon as I exert or over do at all, the penalty is harsh.

The way it looks now, I have about 3 good hours each day. The rest of it requires that I sleep or take it easy. I have had brain fog and memory issues. I am trying to make my house simple. I am clearing out the clutter and setting up systems as much as possible. With brain fog, this is not easy and the going is slow.

I have limited short term disability payments. I have applied for Social Security. I am being assisted by Cardon Outreach, disability advocates and the social worker at my Neurologists office. I started Tecfidera yesterday. I eat well and include a daily green drink, vitamin D supplement. I pray every morning. Now that I know what I have and what the "rules" seem to be, I can "Work The Problem".

That's me. I'm JoniJohn.....

[ElliotB]

Hi and welcome. Know that you are among friends!

[JoniJohn]

Thank you so much. You know how much that means. I think one of the hardest parts of this disease is that people can't see what is happening. They say " she looks fine..." or " she can do more than she's doing...." People don't seem to know how delicate the balance can be, just trying to stay functioning and not trigger a problem. Yesterday I lifted something that was a strain, but I got it done. 2 hours later, I was having trouble walking and today I am still fighting it. Was it worth it? No. At the time I thought I was ok. Now I know, don't strain. My friend noticed in the evening how much trouble I was having walking. I explained what happened and that "now I am gonna pay for it", meaning that because I overdid it, I would pay in increased symptoms. He was surprised, but he got it. Do we need to communicate more?

[ElliotB]

I have unfortunately had similar experiences. You may find this of interest (The Spoon Theory) and something to share with those that simply don't understand:

http://www.butyoudontlooksick.com/artic ... on-theory/