Benign MS?

Hi. I was diagnosed last October following 4 years of being diagnosed with several other autoimmune diseases and Fibromyalgia. I went from working as a full-time psychotherapist with a very busy practice in a swanky high rise to working 3 afternoons a week from an office my husband and I created in our home.

My rheumatologist was the first one to sound the alarm about MS when I went in and mentioned that being in out hot tub was suddenly causing me to feel very weak and tired. That taking a hot shower was making me feel the same way and that my right eye would start to hurt really badly if I stayed in too long.

I had fortunately had a good relationship with a local neurologist because of migraine headaches which had started 4 years ago (my first symptom). A follow-up MRI later and the diagnosis was made.
I went to Cleveland Clinic for a second opinion and they confirmed. I went to an MS specialist in my city and he said he didn’t believe it.

Long story short, my original neurologist is now saying it’s Benign MS and wants to do follow-up MRI’s on me every 6 months for the next several years. They have decided not to start treatment because it would complicate my other autoimmune diseases.

I guess I feel as if I no longer know what to believe. I’ve been “in remission” since February and feel pretty darned good. Other than trying to get my sleep straightened out and the myriad of eye problems I seem to be having, I’m doing well.

Does anyone else have any knowledge or experience with Benign MS? I feel pretty lost…

Nice to meet all of you and I appreciate the opportunity to reach out.

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Comments

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  • Laura Kolaczkowski
    6 years ago

    In addition to what Lisa has written, I would probably go back to Cleveland Clinic and their great MS Center and confer with them about the use of drugs. It is well known and documented that even with clinically isolated syndrome, we should be taking a drug therapy rather than taking a chance with worsening symptoms.

  • Kellie
    6 years ago

    I don’t think you should tell anyone to take drug therapy – drug therapy only treats symptoms and also has horrible side effects! I too was told I have Benign MS – that’s funny to me – it was Benign as soon as I started taking a holistic approach to healing my immune system. Drug therapy does not heal or strengthen the immune system. The fact that you are having so few exacerbations is excellent and you should look at the factors that are happening when you do have a flare-up – did something change with your diet? stress? environmental factors? Also what is the need for so many MRI’s? The medical community uses that long term as a scare tactic in some cases because they want to freak you out about any lesions – think about it this way (I understand the need initially for a baseline) – if you’re feeling fabulous, no flare-ups why get an MRI? So you can possibly start to worry about – what could happen? Look at ways that you can heal your immune system first and foremost – If you’re immune system isn’t functioning properly you will never have good health! : )

  • Lisa Emrich moderator
    6 years ago

    Hi Melody,

    I also have a combination of diagnoses with rheumatoid arthritis and multiple sclerosis (with a few other minor disorders thrown in for good measure). Finding treatment choices which will work together for your best health can be tricky. For example, there are some drugs commonly used for RA which a person with MS must NOT use. Then there are some drugs which have been tested (and used) in both diseases. Just depends upon what a patient’s specific circumstances are.

    As far as “benign MS”, that is a label which is not often used. In practice, it can be used to refer to a person who has relapsing-remitting MS but who doesn’t experience many relapses nor progression. Some neurologists may use the phrase to describe a patient who doesn’t exhibit much overt MS disease activity.

    If you live in the UK, then the term phrase benign MS may keep you from qualifying for disease-modifying treatment through their national health system. Unfortunately, some patients have to wait until their disease progresses to the point that treatment will actually be less effective in preventing further damage.

    It is absolutely wonderful that you are doing well right now. That’s good to hear. Besides the confusing label of benign MS, it is good that your neurologist wants to follow your case so closely with MRIs. Is the plan to change/initial treatment if you develop new lesions? This is something I would want to know as a patient.

    Good luck in finding a balance to managing multiple diseases. It can be very tricky. I hope you continue to be in remission for a very long time. 🙂

    Lisa

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