Last reply 8 months ago
Hello dead weight

Hi, I have had MS since 2003. Have had one relapse in 2006. But have had no problems until a year ago. I got diagnosed with vertigo. Not a big problem and it comes and goes so it is very manageable. Everything has been fine until two days ago. I have started having a dead weight feeling in my arms. I had rotator cuffs surgery on my left arm and have not had problems with it till now. My right arm was paralyzed for three months during my initial MS attack. I was released from seeing my neurologist last year and have been happy. But with this new problem I’m worried.
I know the MS in dormant, but it always stays in the back of my mind. I know I will have another relapse it is only a matter of time. I know what dead weight feels like. I carried it for three months. Does anyone else ever feel like this?

Help please. Any ideas will help.


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8 months ago

Hi @drakonrose and welcome.

Personally, I don’t believe in “Benign” MS. Either you have it or you don’t!

MS is unpredictable, so remission can last for years, or weeks. But, it is still MS!

I feel you need to consult your Neuro again.

8 months ago

I have MS. For 20 years with no relapse or typical symptoms. About as benign as it gets. Neuro not interested in me. Sounds as if you need another MRI to check for new activity. All the best

8 months ago

In agreement with @stumbler. My Neuro tells me the same thing as well.

A benign MS diagnosis is actually a little risky. As MS activity could take place unseen by either MRI or clinical symptoms, patients may be lured in a false sense of security and not do much until relapses start to occur many years later.

When I was diagnosed with Optic Neuritis, my neuro ordered an MRI. Apart from the swelling of my optic nerve, several other lesions were present in different areas of the brain. But no other symptoms and I was perfectly normal before ON. No trace of any other ill feeling. My neuro was very surprised that I did not have other symptoms and sort of happy and relieved. ON which was diagnosed as a clinical symptom of MS put me on the path to DMTs. If ON had not occurred, I would have thought nothing was wrong with me as it healed in 6 weeks. Yet today, other symptoms of MS (spasticity, leg weakness, mild foot drop etc.) have started to occur. I attribute it to not starting DMT’s immediately and waiting for 1.5 years after ON.

8 months ago

Actually meant if ON/MS diagnosis had not occurred …

8 months ago

I think you have to be without symptoms for at least 15 years before they use the word benign.

8 months ago

Thanks everyone. this is year 12 with no relapse. I was diagnosed RR. But the last MRI showed no activity. I know it had been a year or two since then. Some times I just wait for the perpetual shoe to drop and it scares me. I have two kids, 10 and 7. I know the toll it will have on them. Plus my youngest has autism and won’t understand. I think I stress more over my fears of a relapse than I do over the autism. He was just diagnosed with it in October of 17.

I had never heard of benign ms before but when i looked it up, well you know.

I have MS. have had it since 2003. It had me paralyzed on my right side for three months. 1 relapse since 2006. I am doing great. I was able to have 2 beautiful children. Have the most wonderful husband. I am great.

If I say it enough, maybe I will be. So, I am great.

Thank you everyone

8 months ago

@drakonrose , don’t think yourself into a relapse!

Stress is a major cause of MS progression, so is best avoided.

Fear of the future is quite common, but nobody knows what trials and tribulations tomorrow will bring. Live for the present and enjoy the day.

Stay well.

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