Can You Access MS Specialist Care?

My email had a Google alert with a headline I just had to open – it proclaimed “Some patients with multiple sclerosis not engaging with specialist services.” Of course I immediately though, duh! Of  course there is a large number of people with multiple sclerosis who don’t get the services that might be useful to them.

I can think of a number of factors that might make this disconnect with services happen. Whatever the reason, I know there are people with multiple sclerosis not seeking specialist services but I took the bait of the headline and opened the story to read more anyway. The story turned out to be based on a press release from the UK and was a survey sponsored by one of the largest MS drug companies, Biogen.

They surveyed 100 neurologists and MS nurses in the UK, and 93% of the respondents said they believe there are people with MS who don’t see specialist in the UK. I had to read this a couple times not because of this 93% figure but  because it makes me wonder about the 7% of MS providers in the UK who believe they are reaching 100% of the MS population or are they so out of touch they believe not everyone with MS needs to be treated by a specialist? It’s a question I will probably never get answered.

The campaign title 1MSg urges people living with MS to take control and make the choice to see an MS specialists.  Knowing what I do about the National Health System (NHS) in the UK, I believe they have over simplified this process but that’s a discussion best saved for another time. We have a number of readers for MultipleSclerosis.net who come from the UK and I would love to hear more about your experiences getting access to specialist care, particularly if you are among those mentioned in this survey as not getting the care you should.

Here in the United States I can think of a number of reasons why people don’t have MS specialists taking care of them. First, there just aren’t enough MS specialists to go around – unfortunately neurology doesn’t seem to attract new doctors compared to fields such as plastic surgery or orthopedics (two of the top choices of practices for new doctors). Insurance or rather the lack of it can be another restricting factor – it can be costly to see a specialist and some people just can’t afford this care. Then there are many people with MS who once they are diagnosed and told there’s nothing that can be done for their disease just go away and never revisit an MS specialist – I know a number of people who fall into this category and deal with their MS symptoms with their primary care physician or not at all.

Do you see a neurologist regularly? How about any type of clinician who specializes in multiple sclerosis? If you don’t see a provider who specializes in MS you might be getting your care in other ways. I hope whatever your answer, you are getting the care you need and deserve and are not among the underserved.

Wishing you well,

Laura

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Comments

View Comments (6)
  • kicknMSback
    3 years ago

    Laura, it would be nice if you had another answer. I have been seeing a specialist. My health insurance just decided he is out of network and he was the last one available. Now I have to hope that the next neurologist doesn’t wonder why she is the fifth in line since I was diagnosed.

  • afizmyf8
    3 years ago

    Why are people not talking about HSCT?? Hematopoietic stem cell transplantation (HSCT) is the transplantation of multipotent hematopoietic stem cells, usually derived from bone marrow, peripheral blood, or umbilical cord blood. I have an identical twin brother that was diagnosed with MS 11 years ago and it has become more debilitating every day. He found out about HSCT and has spent over a year researching it. HSCT has a 86-90% success rate of irradiating MS forever yet the big pharmaceutical companies do not want you to know about it and they do not want the FDA to approve a procedure that was confirmed successful in Colorado in the 1990’s! The drug companies don’t want this procedure approved because they would lose BILLIONS of dollars in revenue every year. HSCT needs to be made known and pushed to our legislators. By brother went through HSCT in February of this year and is now walking without the cane that he had been walking with for the last 5 years!

  • Azjackie
    3 years ago

    I have been dropped by Medicaid because I have received SSDI for two years. Funny, they do not tell you that when you sign up and it’s not printed anywhere.

    I have been automatically enrolled in Medicare, can not afford the premium, deductible, co-payments, or co-insurance. I make too much to qualify ($1551/mo) for assistance and barely enough to survive ($10/mo discretionary).

    Of the 67 neurologists 180+ miles roundtrip away, only 1 accepts cash pay appointments. My first appointment is tomorrow. My medical care is by a nurse practitioner and emergency care will be by the community hospital.

    I can not afford the $11,000/mo prescription costs. I am working with drug manufacturers for financial assistance for my DMT that has prevented worsening 3 years.

    It is VERY scary to not have insurance, doctor, or medication for a slow acting incurable disease. It is even more scary to feel like everyone has given up on you.

  • Laura Kolaczkowski author
    3 years ago

    AZjackie, Sadly, I have heard this story before from others who get trapped in the medicaid/medicare/SSDI snare. I am so sorry for you and everyone else who has to struggle with the cost of treatment along with the general costs of just living. Please work with the drug company and don’t take no for an answer – they ALL have their private charities set up to help people just like you. Sometimes it takes determination and talking to just the right person to crack through the barriers for help. They want your insurance dollars and will do what they need to for you to stay on their drugs. I hope it works out well for you and the new medical provider tomorrow. -Laura

  • potter
    3 years ago

    I see a neurologist who isn’t a MS specialist the closet one to me is about 200 miles from me. I do a lot of research and try to keep current. I even go as far as reading research proposals and conclusions. I try to stay very logical and not try or believe everything I read. I start a list of questions about new treatments months before my next appointment just to make sure I am understanding the research correctly. My neuro gives me the oddest look when I ask him these questions. Potter

  • Laura Kolaczkowski author
    3 years ago

    Potter, you are a perfect example of why we need more informed MS specialists in every corner of this country. I live in Ohio where there is an abundance of MS specialists all fighting for us… Cleveland Clinic, OSU, Ohio Health, University of Cincinnati are the big players and then there are a number of hospital organizations that have started MS clinics, too. The disparity in resources and care is hard to understand. Thanks for taking the time to share. -Laura

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