An Open Letter to a Newly Diagnosed Patient

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.

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

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.

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!"

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!

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!!

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!

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

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.

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

Hi Jennifer,

I got my official diagnosis in September of 2020. The initial findings were told to me about two weeks before the global lock down in March, so all the tests, diagnostics, etc were done in the middle of all (gestures wildly) this.
My advice as a fellow rookie is to learn as much as you can about your MS - where the lesions are, how they may affect you. Track the smaller symptoms instead of worrying about your next big flare up and see how they affect you.

I have found exercise to help (even low intensity stuff like walking) and eating more anti-inflammatory foods (http://multiplesclerosisnewstoday.com/news-posts/2021/08/04/swank-wahls-diets-reduce-ms-fatigue-improve-quality-life-clinical-trial/). Give yourself time and rest, it definitely helps. Hope this helps for you
-Rochelle, MS Patient

I was diagnosed in April 2020. The MS that I have was induced by Remicade. I was taking this medicine for almost 13 years for AS. I noticed cognitive issues and other symptoms that started to bother me. I went to see the neurologist and I have a mild case of MS. I might not have the full spectrum of MS. I hate the diagnosis and everything attached with the disease. I want to start in a diet and do more exercises. I noticed that praying is helping me. I offer up these issues to the Lord and for people that are in more difficult situation than me.it allows me to have a purpose . I know the journey is difficult but faith helps.