Patients Multiple sclerosis
Topic of the discussion
Posted on 1/20/20 7:00 PM
Have you had a chance to look at the patient interview we published in our Health Magazine on a member who was diagnosed with MS after presumably having it for 50 years? And who managed to heal enough to walk for miles now? I think you might find it inspiring: MS and my battle to walk again
Has anyone else been diagnosed with MS late in life? How did you find out? And what was your reaction?
Beginning of the discussion - 2/11/20Diagnosed with MS after the age of 50 https://www.carenity.us/forum/multiple-sclerosis/living-with-multiple-sclerosis/diganosed-with-ms-after-the-age-of-50-1483
Posted on 2/11/20 1:16 AM
I was diagnosed at age 68'. It was a shock to me I was always a healthy hard working person. One day it felt like I had a charley-horse on my neck area on the left side. I asked my wife to rub on me trying to stop the cramping. That did not work. I started feeling a tingling sensation across my shoulders like when using a TENS unit. The electrical shock feeling went from shoulders and started going down. It was happening fast. I had my wife take me to the hospital about a mile away. By the time we got there the buzzing had gone all the way down and I could no longer use my arms, hands or walk. This all took about 30 min. I was rushed to a larger hospital in a bigger town and got an MRI. They had trouble coming up with a cause for this. My inside organs Bowels. breathing everything was effected. They did a spinal tap. After the results I was told I had MS. I had all the symptoms of GBS. Gullian berret syndrome (sorry sp.). So for the last 6 years I have been treated for MS. ????????
Posted on 2/11/20 5:15 PM
Hello @BWroke ,
Wow, that must have been very difficult to have the illness show up so unexpectedly. How are you doing now?
Posted on 2/11/20 5:26 PM
I can walk with aid of a walker. I can move my limbs but my left shoulder became frozen while I was in the hospital and I still can't raise my arm all the way. Overall I feel lucky to be able to move as much as I do. I was paralyzed from the neck down when I had this attack and not breathing well. I can breathe OK now. I still think I have Guillain-Barre but my neurologist nope it's MS.
Posted on 2/25/20 6:02 PM
@BWroke Wow, I'm so sorry this happened to you.
Posted on 4/30/20 2:53 PM
@BWroke I never heard of a MS attack so massive.... Your story is incredible! Did you consult any other specialist about this Guillain-Barre syndrome, maybe you need a second opinion? Can you regain some mobility with physical therapy?
Posted on 4/30/20 3:25 PM
After Having MRI and spinal tap and testing in the hospital I was told it all pointed to MS. I was told in the rehab I was sent to after the hospital by one of the nurses that I had all the symptoms of GB but was diagnosed with MS. She did this off the record on her own time because she thought I was an interesting case. I have talked to others who agree. I confronted my neurologist and he said it looks like GB but has proven not to be. I asked about the posability of having both and he said it was highly unlikely.
I walk with a walker now a long ways from where I started years ago.
Posted on 5/16/20 4:35 PM
I was diagnosed recently with MS at age 69. It seems I might have had it for years. It took 8 doctors and a number of years for a diagnosis. Recently I went through 4 doctors to get a diagnosis. Now I'm with the only MS specialist in my area. I got to him by pure chance. Most of the time doctors blew me off as a fat hypochondriac. My PCP nurse practitioner did not after having cognitive problems. I'm about to have my third infusion of Tysabri on May 26th. Everyone says that I'll feel way better then. I hope so. The pin in my shoulder area is really bad and the fatigue is crazy. I'm not used to this added to the real cognitive issues. I'm doing PT twice a week and the cupping technique has helped the shoulders a bit. Just grocery shopping puts me under for the rest of the day plus most of the next day. My husband does the shopping when he is feeling good but he has some real back issues so I try to go if possible. Ok enough whining for now. I know that it helps to write down some of this on occasion. Writing in a journal is quite difficult at the moment. Being able to focus, write legible so I can read it and spell or find a word, well it's tough.
Posted on 6/15/20 7:06 PM
@NewLeaf Ugh that makes me so mad about the doctors, how do they expect to help people if they won't listen and take them seriously?! I'm glad you found a good one though. How did your infusion go? I've heard a bit about cupping but I've never tried it, it really helps?