An Open Letter to a Newly Diagnosed Patient

John Connor avatar

by John Connor |

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heat, quiet, hotel, covid-19

I’ve been a co-moderator on the MS News Today Forums for a couple of months now and recently wrote a reply to a newly diagnosed patient, Jono. He’s only had MS for a month. I found myself writing what I wished I’d known when I was diagnosed.

Now, I’m well aware that you all don’t pore over the forums, so in the spirit of cross-pollination, I thought I’d share the post here today. If you’ve read my column before, I hope I’ve built up enough goodwill that you might at least sneak a peek at the MS forums. If you’ve read me and hate me — well, you won’t have gotten this far anyway!

Hi Jono

What follows is strictly my view. I wish I’d had the sense when I was finally diagnosed to write to someone about it. This is very much what I’d wished I’d known then.

I was 51 (am now 61). Had been hit by a sclerosis a couple of years before but it hadn’t developed into MS: unfortunately it did.

I’m British & the policy back then was to only give DMT’s (Disease Modifying Therapies) after a number of relapses (this has now changed thankfully).

Am now in a wheelchair- it seems MS is often very aggressive when it occurs later in life. Though thankfully the majority of people with MS don’t end up in a wheelchair

I’d tell my newly diagnosed self to grab a DMT as early as possible. Indeed I’d push for stem cell replacement therapy (comes with 1-2% risk of death mind). By the time I could have got it my MS had already progressed to where it would no longer work. It doesn’t fix you but it freezes you where you now are. MS is a progressive disease so grabbing what you can whilst you can is eminently preferable.

Good luck Jono – this disease is incredibly complex and new things keep popping up even when you’re something of an old lag like me.

MS is different for everybody but I’ve written a column here for 2 years (Fall Down, Get Up Again) which might give an insight of what may happen to you. It might also get me another reader! (Toot-toot)

Best John

Continuing in the vein of the forums, please tell me anything that you would add to this letter in the comments below. I’ll then add them to the correspondence to Jono in the hope that some of it helps. I know I should be encouraging you to do it yourself, but we both know that ain’t gonna happen. Sign off with your name and I’ll make sure you get a byline.

Now that will make you want to have a look.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Lizann Reitmeier avatar

Lizann Reitmeier

These are good tips John. As a second generation MSer, I watched my dad do battle in a time before drugs. He could still (kind of) walk when he passed away at 75 from cancer. He was an inspiration to many. From my parents I learned the importance of staying positive, staying active and eating a relatively healthy diet. I believe these are the foundations to success. And don't smoke. I have been fortunate to have been successful with this approach since my diagnosis 28 years ago.
As the child of a parent with MS, I would add don't worry about the little things. Your kids will still learn to catch a ball, even if you can't teach them, and they will grow up with an understanding and compassion that will far exceed that of their peers.

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Mer avatar

Mer

I’d love to respond but I am in the middle of my MS infusion.
Best to all.

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Maureen Friedman avatar

Maureen Friedman

Hi Jono,
When I was first diagnosed I felt relief at first because I knew what I was up against. It took longer than 2 years to diagnose me with Primary Progressive MS. I listened intently to my doctors’ advice for treatment options. (This is in 2007). Back then there was no DMT’s (disease modifying drugs)for PPMS. But now there are quite a few. Your choices are many now.
What would I do differently if I were diagnosed now?
Become or stay active: swim, yoga, walking etc., depending on your ability level. Keep a structured diary so you can get an idea of what is changing as time goes on.
Think outside the box: I changed my diet 5 years ago and it’s made a huge difference in my progression keeping it stable. I wished I had done that sooner. Now I eat Paleo/autoimmune diet. Attitude also plays a major role with MS. It’s easy to feel sorry for yourself but I learned as time went on that I was my own best advocate. Surround yourself with positive people. I am blessed with a close family and friends to lean on when I need help. Don’t let pride keep you from asking for the help you need.
Listen to your body. As John says everyone with MS is different.

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Melissa Cash-Tenorio avatar

Melissa Cash-Tenorio

This is only my opinion or like the way that I see things. First of all, one has to put the stigma of actually being diagnosed with or labeled with something in the back of their mind and once you do that, just remember your appointments and keep enjoying life to the fullest every day. Don't change your routines, keep everything as normal as possible because you need to decide and only you can decide this. If you are going to beat it or will it beat you? You are still who you are no matter what people say. Yet once you let everyone in on the diagnosis you will be very surprised at how many people will act like you have the plague. That's why the fewer people know the better off you are. Some will throw you sympathy parties and circle around you as if you were extremely ill. Don't let them get into your head, only you stay in your head. That's enough, don't let them rent space in your head.

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Erin Franco avatar

Erin Franco

I’ve been very open about my diagnosis. (It’s the easiest way to explain the cane😂) Maybe it’s just the mentality of the people here in the Texas Hill Country or that I’m a bit of a loaner, but I have found the responses refreshing... not scared or overbearing, but supportive in a very reserved fashion.
I think often times we need to use discernment in these sorts of things like when I kept my battle with Iberian cancer mostly to myself, but if we have more visible symptoms we are somehow graced with the most appropriate response. I’m sorry that you weren’t

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Anastasia02 avatar

Anastasia02

So TRUE!!!

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Julia Farris avatar

Julia Farris

Dear Jono,
Assuming you have been diagnosed with RRMS in the U.S., here's what I'm glad I DID do after 19 years dx:
1. I found the best MS clinic and doctor I could find. Not just a general neurologist, mind, but an MS CLINIC peopled with doctors and nurses who know and understand Multiple Sclerosis. It has made a world of difference!
2. Educate, educate, educate! Go into your check-ups knowing as much if not more than the doctor. You are your own best advocate. I never take my neuro's word for something without researching it first. There have been several things he has offered that after research, I said, "not for me." Also research clinical trials that your clinic/doctor may be or get involved in.
3. Stay active, even when it's hard. The longer you keep moving, the longer the nerve conduction lasts. Swim, walk, bike, whatever floats your boat - like the commercial says - "just DO IT!"

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Dayna avatar

Dayna

Hi Jono,

Keep moving, take supplements - Hemp Oil, vitamin D, B complex, CoQ10, fish oil, flaxseed oil, iron! Keep reading, the neurologists don’t like to hear about anything except a DMT, but these will be good for you. Have faith!

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Kevin Keplinger avatar

Kevin Keplinger

The best thing that anyone call tell a newly diagnosed patient is to tell them about HSCT!! Knowing what I know now after fighting MS for 13 years, going through antibiotics, bee stings, FDA trial participant, taking a DMT, & being treated for Lyme's Disease, I wish that I had gone right for HSCT the day that I was diagnosed & would have had I known about it!! HSCT could be helping so many people that it is outrageous that the MS community isn't being informed about it & that it isn't available to all!! We need HSCT & we need it now!!

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Sharity avatar

Sharity

Hi,John! I just joined today and I'm not sure how to join in the forums or post,so I'm writing here. I haven't been diagnosed, but the all over intense body itching I have is why my Google search brought me here. The docs have explained my pain, numbness, fatigue, pins and needles, GI & bowel issues, memory probs, as fibromyalgia, but none of them have been able to explain the itching. I get jerks that make me hit myself in the face with my phone, cigs, remote, etc., or I throw them across the room. Is that something anyone else has experienced or common with MS? It started when I was 14, I'm 37 now. I'm well-read and when I started forgetting simple words recently, that's when I really got concerned and decided to get to the bottom of this. I'm actually having a hard time typing now because my left hand just went numb. I'm not sure if I'm headed in the right direction, or if I'm being a hypochondriac lol. Thanks for your time everyone!

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John Connor avatar

John Connor

Hi Sharity

Just hit the 'Forums' word at the top of this page and ask to join.

I have MS but can't comment on your symptoms - I'd have to be a Doctor who also had MS to do that!

The one thing I can say is that everybody's MS is different. A common saying for us is 'No two the same'.

Our parent company Bionews runs a Fibromylgia site so it's worth checking that out: https://fibromyalgianewstoday.com/

Good luck

John

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Jennifer avatar

Jennifer

I was diagnosed with MS in October 2020 after initial symptoms in August 2020. Guess that was a personal kick-in-the-teeth from a year that's been really rough for a lot of people. I seem to be extremely lucky so far, and praying it continues, that my symptoms are mainly altered sensation on the right side of my body. My neurologist gave me the list of treatments from the National MS Society website and told me to pick one. The one I picked isn't covered by my insurance, so I started Glatopa in December. I'm very anxious waiting for my first (although I guess it would be my second) flare-up. Are there any common symptoms of a flare-up that I should look for? I'm taking some vitamin supplements (D, B, Magnesium), but is there anything else the group would recommend? Definitely trying to eat healthier and exercise as much as I'm able. Appreciate any tips from those who have been living with MS longer.

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Val Thiemann avatar

Val Thiemann

I was diagnosed on March 19th 2019. I
had been struggling off and on for many yrs with my right leg dragging like I had a bad lymp from an i jury yet couldnt recall hurting myself. My body at times ached like I was hit by a truck I blamed it on my arthritis and out of shape. I also carry extra weight from not smoking anymore. At the time of my diagnosis I was doing aquacise going to massage appointments and chiropractic treatments several times a week
I was not getting anymore than 60% better. At that time my former chiropractor told me I could do more to help myself. I was very sad and hurt by this comment
3 days after he said this I was just finishing getting ready to leave an aquacise class when I could not get my shoe on myself. I was 51 at the time and needed the help of a lady in her 80s to help me. How embarassed and humiliated I fealt. I got myself home and into my dr the next day in Saskatoon. After taking me through several tests he sent me to RUH Emergency where the oncall neurologist examined and admitted me to hospital. After a couple days of tests it was confirmed through a CT scan and MRI my
Diagnosis was PPMS, I was releived to finally have a diagnosis my symptoms were all over the map
Everyday was different from losing mobility in my right hand to even have trouble eatting when feading myself or getting the soap out of my hair when showering
Some days my whole body ached and I was always soo tired. Sometimes it would take an exceptionally long time to empty my bladder. Doing a few stairs seemed like I was facing climbing a mountain when in reality it was only 10. I had struggled many yrs with different ailments
Now everything finally made sense. I had been feeling like the village hypocondriac. One thing for certain it is not a boring disease eberyday is different.
I now take Famprya a walking drug to help with mobility and have an Ocrevus infusion ebery 6 mons. So far as of my last MRI in Nov of 2020 my MS appears to be stable for the time being. I guess my advice is keep moving forward and be your own advocate. My former chiropractor was embarassed and fealt stupid when I made an appointment and told him I had PPMS and nothing can change that. I got satisfaction that day having him know I was doing everything possible
Val Thiemann

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