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Son expecting diagnosis

More than a year ago, my son (now 31) noticed his left leg was weak--it would sort of drag when walking. We thought it might be related to back surgery (microdiscectomy) he had after badly damaging a lumbar disk when moving something heavy, although it was more than 2 years after his surgery. Last winter, he mentioned it again, and also that he was very fatigued and depressed. Chalked the fatigue and depression up to it being January (he's self employed and there's little work at that time, plus he's prone to SAD) and the fact that his first serious relationship ended when his gf made a long-planned move across the country.

He tried a month of chiropractic which did nothing. Then it turned out his ACA health policy had lapsed (his first time getting ACA and what he though was direct deposit of premiums turned out not to be the case). It took him some time to get coverage again and he went back to his PCP who had thought he needed PT. But after doing some reflex tests and checking balance and walking she referred him to neurosurgeon. They had him do a lumbar MRI (nothing) and then a thoracic, which showed loss of myelin.

Last winter the thought of MS had brushed my thoughts but I had shooed it away. After learning about the myelin loss, I started googling but was scared away by multiple myeloma (a family friend died of that) and some kind of fatal myelopathy. They called as soon as the MRI came back and wanted to see him that same day, he ended up with a referral to a neurologist who is reported to be the best MS doctor around (he also has a psychology PhD I've heard) and another brain MRI. Right now MS is the working diagnosis but there's a spinal tap and a neck MRI left to do. The were going to do an EMG but neuro said no point.

This started as sheer terror, not so much now. I have felt so angry as well. He had a very, very difficult adolescence due to an unrelated dx and we had serious problems with his school, social service systems, and eventually juvenile justice systems. Early adulthood was also rocky. He got a GED, eventually built up his business--which requires a LOT of travel (driving--I thought maybe the driving was causing the left leg weakness) and has physical requirements often involving ladders (avoiding for now). The last crisis had been a 2 year legal battle with the state over whether he was required to provide worker's comp to his partners--he won but it cost a lot and there was really concern that his business would go down the tubes.

Anyway, for a long time my usual mental state with regard to him was worry, and the last few years have been such a complete change--then bam. It seems SO unfair.

His cousin (also male) was diagnosed with Lupus at 23 and my mom had Hashimotos (thyroid autoimmune disease) diagnosed at a young age, and his paternal grandmother had idiopathic pulmonary fibrosis which is also believed to be autoimmune, so there may be some predisposition.

Right now he's driving himself really hard work wise thinking about medical costs ($6900 deductible, $250/month premium, expected he will cap his out of pocket every year going forward and need to be aware of what DMTs insurances will cover along with other possible limits).

  1. Hi SMcMahon. My heart goes out to you and your son. It sounds like life has been difficult for both of you. I hope he will reconsider working so hard right now. Financial security is important, but stress can also make MS symptoms worse. There are program that can help pay for medications. They often cover all the costs that insurance does not cover. It is hard not to worry about the impact MS will have on his future, but it is also impossible to predict the course of his journey. MS presents differently in everyone. He might progress quickly, but he might also experience only mild symptoms for decades. It is important to plan ahead, but it is even more important to live in the moment and to enjoy today. Here is a wonderful article from one of our advocates that you might want to share with him: https://multiplesclerosis.net/living-with-ms/a-few-thoughts-for-the-newly-diagnosed. I hope this helps and that you continue to seek support from this community. We have lots of family members and caregivers here. It might make you feel less along. Hugs! - Lori (Team Member)

    1. Just have to share my story with you, I was diagnosed in 1980 at age 37. When my son was early 20's he had an MS attack very similar to my first one. The dr did an MRI, but didn't give an official diagnosis to him ( they wait for the second attack). He had a second attack, but refused to go to the dr. He then got into biking and went on to Downhill Bike Racing which is an 'extreme' sport. After doing that for 30 years, he has finally decided it's time to quit (he's had a few broken bones, etc from some gnarly crashes) at age 54. My point is, after pushing his body to extreme, he never has had any more symptoms of MS. I had a dr who told me a similar story about his sister. This may not work for every one, but I think it's something the medical community should really look at. I've done fairly well with my MS over the last 47 years, and I've been quite active most of those years. Now, at age 77 and a few other acquired illnesses, I'm not so active. I've graduated from RRMS to SPMS...but after I got my Covid shot, I had an attack that has affected my legs. One of the things I changed in my life after I was diagnosed, was being very careful what I put in my body...I was pretty complacent when the Covid came along....I thought, "at my age, does it really matter?" I have decided "it does": whatever time I have left, I want to enjoy my family.

      1. Hi @Peg100. What fantastic news about your son! I am so glad he has been able to avoid the symptoms and complications of MS. I hope you recover from your Covid shot soon and that you are as healthy as possible in the years to come. Best wishes! - Lori (Team Member)

      2. This is interesting. I'm glad your son was able to maintain his athletic endeavors all these years in spite of MS. I know quite a few folks who have persisted with their chosen hobbies, careers, etc, which made it far easier for me to accept my own diagnosis in 2013 because I could see that it wasn't a death sentence.

        As for the vaccine, I've not seen anything to suggest the vaccine could cause a relapse... whereas stress (of living through a pandemic) is certainly is good supply for all of us and could be a likely trigger. It's important to report your experience to your neuro, of course, but I'm betting the heat, pandemic stress, or some other force is behind your latest flare (which I'm sorry you have had, truly).

        You are so right, though... it *does* matter, regardless of age: your time with your family and friends is really so critical to your overall well being. I'm glad you got the jab!

        Best, Tamara, MultipleSclerosis.net community advocate

    2. Thank you Lori. I think I am now stable after the 'attack'. I just can't walk as far as I used to. I feel very blessed to be doing as well as I am.

      1. this is certainly good news. I don't know where you live but the heat has been oppressive for so many of us, I hope you are staying cool. I have had periods when I can't walk far, and then I've had periods where I can walk just fine. I hope you are in a temporary place. Best, Tamara, MultipleSclerosis.net community advocate

    3. Thanks Tamara. My experience thus far tells me that I've improved as much as I'm going to, unless I discover some nutritional help. I can relate to the heat issues; we had a heat wave the end of June (up to 116) and my AC quit. Luckily, I have family close by, and my AC was fixed in a couple of days. I remember the days (30 yrs ago) when I said, "The hotter the better." Wouldn't it be nice if we could just "rewind" once in a while.
      Thanks again, Peggy

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