Overwhelmed and Scared

Hi, I feel pretty overwhelmed and scared. I think my son who’s 30 may have MS. He’s had some symptoms off and on for probably a decade now that I look back, some of which were vague or could be attributed to something else. Doctors would give him a prescription for different things. Once he said he told a doctor he had numbness and pins and needles in his face and they thought it was sinus. I struggle with guilt. I ask myself did he not get enough sunlight? Were we blind that something was wrong with him and weren’t more persistent to help him. He went to college the last several years and he seemed ok. But I feel I’ve failed him somehow. He’s says he’s having some inflammation issues around his chest area and occasional brain fog and neck pain. His primary gave him steroids and muscle relaxers. They sent him to a Rheumatologist for neck pain and that went nowhere. He has an appointment with a neurologist tomorrow only because I suggested it to the doctor.

He’s been trying a diet for about 3 weeks, I think it’s the anti-inflammatory paleo diet and he has stopped eating the things the diet says to quit like dairy, rice, legumes, etc.. I noticed a supplements list on Matt Embry’s website I thought we might look into. I just hope he can get some relief somehow. It’s encouraging when I read stories of people who do diets and get better. I think my son is skeptical that he’ll ever get better but I hear for some it’s takes months and more than a year for some, so I guess it might take some time to see any changes. We know of a friend who did the paleo diet my son is doing and she doesn’t have MS, but had inflammation issues and it took her 6 months to see changes but she got better on the diet.

One thing that worries me is my son has no job or insurance. We wanted insurance for him, but you miss the gov’t deadline, and can’t get it for a year and we did purchase some insurance online, but when he tried to see the doctors on the insurance list of doctors, those doctors’s offices didn’t recognize the insurance so we decided to drop it. Not sure if we did the right thing or not. Maybe someone here knows of some insurance we could purchase for him that is good. How does anyone afford MS drugs at $5000+ a month especially without insurance!?

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Comments

View Comments (3)
  • katrina
    4 months ago

    Your son is lucky to have you. Finding the right diagnosis is the most important thing in my opinion so he can get the right treatment. I didn’t have insurance that covered meds my first year and I was able to get the meds for free.

  • collena
    5 months ago
  • Erin Rush moderator
    5 months ago

    Hi Stacylane162! Please, let go of the guilt. There is really nothing you could have done to prevent/delay MS. Also, many people with MS struggle for YEARS to get a proper diagnosis. Since MS symptoms are similar to symptoms of other conditions and illnesses, it can be very hard to get diagnosed quickly.

    If possible, finding a good physician for your son is a really good idea. Also, getting insurance is also a smart move, when the next enrollment period rolls around.

    Also, I might suggest contacting the NMSS (National Multiple Sclerosis Society) — https://www.nationalmssociety.org/ and the MSAA (Multiple Sclerosis Association of America) — https://mymsaa.org/. Both organizations have a variety of resources (education, emotional support, financial support, etc) for individuals living with MS. The NMSS has a resource where people can interact with an MS expert, called an MSNavigator — https://www.nationalmssociety.org/Resources-Support/Find-Support/Ask-an-MS-Navigator. This can be a great way to learn more about living with MS.

    I hope your son can get some answers soon and find a treatment plan (be it natural or medical) very soon.

    Thank you for sharing and again, shake that mom guilt off! You are doing a lot to help your son right now and that’s what matters!

    Best, Erin, MultipleSclerosis.net Team Member.

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