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MsMaven

Veteran

Upset tonight. My nephew is an ER MD. The last 18 months he and his wife, also an MD, have worked on COVID cases. I’ve worried so much about them. They have also done a series for doctors to help with Covid-19 stress.

A few months ago nephew had an accident on his mountain bike. He is athletic and in great shape, but he had numbness in his legs. I thought immediately of sciatica, which I have from time to time. Maybe an injury from the bike accident.

Diagnosis today: MS. I texted my sister and she said she wanted to talk today or maybe tomorrow. It will be tomorrow. I read some online about MS and find there is at least a treatment that can slow the progress of the disease.

Still, I am so upset. Of all people in the world, this sweet, wonderful, idealistic young man should not have to deal with this disease.

Have any of you had to deal with this in your family? I so want to comfort my sister. I haven’t shared here, but she was at my side during a difficult loss of my own. She is fighting her own health issues so I can’t put her at risk to go to her side.

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38 replies

Latest reply was from Kate

chewyspaghetti

Veteran

I'm so sorry. My grandmother had MS. It was a long time ago, so nothing I can really say about current treatment. I know it's come a long way, though.

Joy

Veteran

My mother and a male cousin had MS. My mother worked hard to eat very little to keep her weight down and to be able to feed herself. She lived to be almost 80 but got very weak and helpless.

My cousin was an attorney and had to quit because he lost the ability to talk and could not speak in court. He lost his family through divorce and tried hard to fight the disease. Then he sort of disappeared.

Every case is different and proceeds at a different rate. My mother quickly lost the ability to walk even with help and could not see without closing one eye. The Council of The Blind gave her the most help. She tried to stay busy phoning my dad’s Lions Club members to remind them of meetings. She got a tape player that had levers that she could work and tapes of current magazines and books. This was loaned to her by the Council of the Blind. Finding a thick gel cushion to sit on was a life changer. Sitting a long time, especially in a wheel chair, got uncomfortable. My dad was her care giver. He woke up several times a night so he could change her position in bed. She could not even roll over, eventually. She asked for clothing sized too big so it was easy to change.

I am so sorry about your nephews diagnosis. Did they do a spinal tap to do the diagnosis? Sorry this is so long. My mother never lost the ability to speak. The mind was excellent, and her memory. She missed seeing people, so encourage visitors and outings.

Stagiaire Fash

Veteran

What a stunning surprise, especially in contrast to the vigorous activity that led to the investigation. Maybe they caught it a little earlier because of the bike crash.

I have a little experience with MS, but cannot give you much comfort. My cousin had it; at my sister’s wedding, my uncle (who is generally an unemotional boor) was moved to tears because I looked so much like his daughter had looked.

It sounds like your nephew lives boldly and well. More power to him!

ETA meant to say how wise you are to respect which circle you are in and to lean outward for support, rather than on his mom.

kkards

Veteran

MsMaven, so sorry your nephew is dealing with this, especially now on top of everything else. I have an uncle who was diagnosed with MS about 10 years ago. He was a around 60 at the time, and was working as a contractor. He managed to work for many years after that. He and my aunt joined support groups and got plugged into the drug trial community. That has helped them a lot, as they are getting support and as they feel like they are part of the solution. (I will say that not all the drugs have helped, and some my uncle could not tolerate at all)
As I’m sure you know, this disease is unpredictable and seems to follow its own timeline.
Hoping that you and your sister will be able to get together in person soon, I’m sure that will be a comfort to both of you.

Jules

Veteran

I’m so sorry your nephew and family are dealing with this. I know someone diagnosed about 10 years ago. I’m not going to claim it’s all sunshine and roses but they continue to work, care for their young child and enjoy life through travel etc. It’s hard to give advice on how to support your sister without knowing her or what her process will be, but I suspect just being there as her kind and loving sister will be a huge comfort and you will figure it out together.

Aquamarine

Veteran

My neighbor in his 80s has MS, and he is one of the most inspiring people I know. He cared for his large home and yard himself just until recently, zipping around in his motorized wheelchair, lawn mower, snowblower, etc. He has competed in wheelchair races, and is now caring for his wife who has dementia. I won’t say his life is easy, but talk about when life gives you lemons…

I wish your nephew the best. As a medical professional himself, I am sure he will have access to and knowledge of the best care possible.

rachylou

Veteran

I count two friends with MS, and a coworker and my boss have MS. It truly goes along differently for everyone. My boss started the whole business because she felt eating gluten-free was helpful. I’ll be honest and say I think that was a bit of magical thinking on her part when it comes to MS - not that I think it doesn’t. Just that it’s probably not the gluten itself that’s the difference. Anyways, I’ve seen her raise two kids and grow a bakery business and build a house - there’s still a life to be led. As a professional patient myself, I personally think it’s helpful if people are not always asking how I feel and if one’s mom learns one’s medical routine (which my mom has not, ahem!).

NancyW

Veteran

Someone in my extended family was diagnosed with MS 20 years ago. She has done very well on an older drug regimen. There continues to be a good deal of drug development for MS. Your nephew may have a long, happy, and productive life. But all that aside, now is a time for mourning the life that was expected and dealing with that loss. Your sister is so fortunate to have your love and protection.

Anonymous

I'm so sorry - it's a tough diagnosis to receive. My grandmother and my husband's sister both had/have MS , with SIL having a very advanced and debilitating case . Manitoba has among the highest rates of MS in the world - unfortunately.

Anonymous

Very sorry, Ms. Maven. I’m sure a thorough diagnosis process was completed. But I want to share that I know someone with Guillian-Barr syndrome caused by COVID. And Guillian-Barr is very similar to MS. I wish you and your family strength and comfort.

Peri

Veteran

I'm so sorry this has happened. Life isn't fair at all. No, he should not have to have this.

My BFF's SIL has had it for 30+ years. I think she has some issues but is not disabled and from what I know, functions okay in her life. My hairdresser's husband has had it for about 5 years and he is still working in a job that is fairly physical. I think every case is different.

The only thing I would say is to keep the treatment options you've read about to yourself for now. New diagnoses can be so overwhelming and the last thing most people can handle is to be flooded with things people read about online. I wouldn't even ask for many details unless she offers them. With your nephew and his wife both being MDs I'm sure they are primed and able to get the best information available as soon as they are ready for it.

The best thing you can do for your sister is to say "it's treatable". That's what my husband's oncologist said at his diagnosis of Lymphoma and those two words helped more than anything. At the time it was all I could hold on to. And then listen to anything she wants to say. You referred to a loss so I'm sure you already know what I'm talking about.

Hugs.

Sloper

Veteran

I'm sorry that your nephew - one of our true heroes - is facing this challenge. And that you can't be at your sister's side at this time.

I guess I'm a professional patient too (like Rachylou calls it) - not MS. Plenty of challenging moments to be sure, but it never fails to uplift me to read about the many, many scientists and researchers all over the world who have worked over the decades, and who continue to work to bring humanity new treatments for many diseases.

What I think would be comforting to your sister is for you to become as informed as you can - so that you can listen with awareness, and offer information if you feel the moment is appropriate (and is asked for).

There's positive news in the development pipeline:
https://www.nationalmssociety......s-Progress
Looks like some other good resources on this site too.

Also - very important - as Peri says - each case is different (an important lesson I learned from my own situation). Her other advice is also spot-on.

MsMaven

Veteran

Thank you all for your comforting and wise comments. I haven't known anyone with MS except for the wife of DH's coworker and this was decades ago. Your experiences help me understand a little better what we will be dealing with.

Joy, I don't know yet what kind of tests he had, but I know he will get the best treatment.

Nikki, thanks for the information you shared. I wonder if this is a possibility for my nephew. He was the first one of the family to get vaccinated and he had a strong reaction to it.

Sloper, great website--I'm going to spend some time reading it today. After I read some of the early symptoms it could well be that one of them, problems with balance, could have caused the bike accident and symptoms and not the other way.

I haven't talked to my sister yet. It will probably be later if she's up for it. If not, I'll wait until she is. At the beginning of the pandemic she was diagnosed with a difficult and painful disease that our Mom also suffered with for several years, which as made life doubly difficult for her. There is so much to learn and I wonder if these diseases have a genetic component or if they are related.

Again, thank you all. This is a safe place to come to. Eventually the MDs will share on FB as they have done with Covid information, but right now I don't want to mention it there or on Twitter or anywhere else but here.

And I am so grateful for my own good health.

Sal

Veteran

Oh this is very hard.

I do have people in my family with MS and also used to work for the MS Society. It is a very unpredictable disease and there are different types from relatively mild through to more severe. There are wonderful treatments.

I think Peri wrote some excellent advice above re how to communicate.

A big virtual hug.

MsMaven

Veteran

Talked with Sis today. She's in much better shape today and needed to talk. Sloper, I sent her the link to the MS Society website. She said the whole family had been looking up stuff online.

nuancedream

Veteran

MsMaven, such devastating news regarding your nephew, a frontline healthcare hero. My cousin, a teacher, swim coach and former aquatics coordinator for the Michigan Special Olympics, was diagnosed at age 50 with MS. As others have noted, the course of MS is very unpredictable but there are some very promising treatments currently out there. Wishing you and your family strength and comfort.

gryffin

Veteran

Hi Ms. Maven - I'm a physician and this is not my specialty. But I've had a strong interest in the causality of disease and I have been scope locked on researching and making diet and lifestyle changes especially since the advent of covid to try and minimize my risks. A number of physicians have youtubes and books out inre to how lifestyle, STRESS, diet, sleep, exercise impact health. Medicine in our time is reductive. We treat a symptom or constellation of symptoms but often don't know the cause or fail to look at areas of our body that are causing and fanning the flames of disease. I'm a huge fan of Joel Fuhrman's Eat to Live. I have personally reversed an autoimmune inflammatory arthritis with dietary excellence and going gluten free. Dr Terry Wahl has a number of videos on how she reversed her MS. Mark Hyman, MD functional medicine has a lot of related videos on his Dr Farmacy Channel on youtube. Cynthia Li, MD has her book out on reversing her autoimmune disease. 20 years ago I would have blown this all off as woo-woo. So take this from where it comes. If you have MS you have a boatload of brain inflammation aka leaky brain. The data absolutely shows that you will also probably have an astounding amount of leaky gut. 2/3 of our immune system lives in the gut. I strongly believe the data that there are six pillars of health - diet, exercise, sleep, stress management, removal of toxins, appropriate supplementation. I've spent the last 24 month researching this and I drank the coolaid. I'm a physician, I practice medicine as I was taught, but I incorporate much of nutritional medicine into my practice and my life. I absolutely would suggest your nephew go through the traditional channels. But we were not trained to look at the body as an ecosystem. I strongly urge you to also recommend your nephew also have a functional medicine consult (again not my area) or truly educate himself in this area. The body has an extraordinary ability to heal but it can't unless you remove the causes of inflammation that are the root cause of the symptom and disease. If you'd like any further info don't hesitate to pm me.

Angie

(website)

Fashion Stylist

MsMaven, that is very tough news to hear, and I'm so sorry. Wishing your family strength and a way forward. I'm sure you will be of great support to your sister.

Jenni NZ

Veteran

I’m so sorry. I also have Gryffin’s profession but no special training regarding MS. I have had several patients over the years, and acquaintances, and the severity seems so variable, that you can’t seem to predict anything. It may not be as bad as you fear. But very unfair I agree.

viva

Veteran

I'm so sorry. I have a friend with MS but no real personal experience to speak of. But I will keep you and your family in my heart as you navigate this.

Staysfit

Veteran

So very sorry to hear this news! I have a classmate from medical school with MS. He was diagnosed in his early to mid 20’s. He already had the diagnosis when we were in medical school. He continues to have fairly good neurological function more than 30 years later. He is married, a parent, and still works as a physician. I recall he decided to slow the pace of his residency training to reduce stress…and because of an exacerbation of his illness at that time.

RobinF

Veteran

So sorry for what your family is going through. I have no experience with MS but will keep you in my thoughts.

Helena

Veteran

I am so sorry to hear this. Canada has a really high relative rate of MS - we have one friend who received this diagnosis, and it's an ongoing process of adaptation, even years later. However, I know she has also found lots of resources and support groups, etc. and I hope your nephew will find similar support.

I think your kindness and lending an ear and a shoulder will be a tremendous support to your sister and nephew - even if it needs to be from a physical distance for now. Sending huge love.

Anonymous

No experience with MS but I have experienced for myself and others something mildly worrisome turning out to be something horrifying.

A doctor recommended not looking too far ahead, only on the next two or three steps and not letting the problem completely dominate all of life.

I bought a book for my grandchild called The Rabbit Listened, as useful to myself as her, about how sometimes just being attentive to someone else, without trying to fix their problem or diminish it or push them in any direction can allow them the space to explore their own feelings and the clarity to find their own way.

MsMary

Veteran

Oh, I'm so sorry to hear this! Sending love and support to you and your family!

slim cat

Veteran

So sorry to hear this - such trying times. Hope family support and medical help will ease some pain.

Cardiff girl

Veteran

I am adding my sorrow for you at hearing this news.As far as l understand it the progression of MS is very variable from patient to patient.The shock of the diagnosis , the unpredictable nature of the disease and the youth of your relative naturally make this hard news to come to terms with.l am wishing you and your family all the very best as you navigate this difficult journey together.

MsMaven

Veteran

Thank you all for your support--it means a lot to me. My sister forwarded Sloper's link to her son and his wife and they send back their appreciation. She tells me that after talking with his doctor today, he understands that this is going to be a long process and said it's scary right now to start and know for sure what's ahead.

I'm always interested in genetic links and am curious to find out if the illness my sister and Mom have struggled with could somehow be related. My superficial search so far turns up nothing, but I did see something about some area that had a higher number of cases in an area. Now can't remember if it was Wales or somewhere in the UK. I recently did DNA testing with 23andMe and Ancestry, so I'll go back there as well to see if I can find anything. I still haven't finished all the quizzes they have.

Stagiaire Fash

Veteran

With 23andme, the quizzes are endless, I tell you. My son and I did it just before moving here, found out he carries the trait for sickle cell and I have a high portion of Neanderthal, and they still send me quizzes, etc.

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