Last reply 1 year ago
new here, recently diagnosed

so my right arm went numb and tingly and after several dr appointments, 2 MRI’s, lots of blood work (to rule out other things) and a lumbar puncture, the diagnosis of RRMS was confirmed in October 2016. I saw an MS specialist that the neurologist referred me to and she started me on Tecfidera. I couldn’t take that. She switched me to Copaxone. so far, I can take that.

my initial symptoms have gone away. I understand that the hope is that taking the Copaxone will slow the progression of the disease.

I was adopted as an infant and after searching for my birth parents, found them. My birth mother had MS and she passed away in 2007 from cancer.

My goal is to stay as healthy as possible so I can be as mobile as possible for as long as possible. Anyone else in the same boat? or are we all in the same place?

any advice from those who have dealt with this longer?

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Hi,

My wife is in a very similar situation to you, diagnosed in Nov 2016. Similar experience with numbness and then clearing up. She started Tecfidera and it didnt work out first time around, but we tried again at the beginning of Jan 2017 and with a number of different techniques we found a way to make it work. At this point she has no side effects from it. I think we have similar goals and want to maximize our odds of keeping MS at bay as much as possible. We are following OMS (overcomingms) very closely. It includes about 5 things that are commonly recommended by protocols in some form or another, but its the one we choose to follow. It includes, diet, exercise, meditation. I think there is enough evidience out there that diet plays an important role. I was reading the abstracts from ACTRIMS 2017 this year and it seems to still all be pointing to similar conclusions that OMS is reaching with just more science and testing going on. We are also taking several supplements like probotics, biotin, vitamin d, alpha liopic acide, flaxseed oil and turmeric. She is 45 so on the later side of onset i think. Contrary to what our dr’s can say, I think dmd’s are not the only option. I would surely google some options out there and see what you are comfortable with, but of the many protocols people follow, many have a common theme (low processed foods, sugar etc) and I belief they will really help with overall outcome.

There are some great talks from the rock mountain ms center that talk about overall brain health, which I think is the main thing we are trying to preserve.


stephz
1 year ago

Hi. I was diagnosed Nov 16….after similar symptoms + optic neuritis…it took 10months to get there so…anyway saw specialist in Jan and not on any dmd yet – he wants to see another brain scan…since then my arms have gotten worse so will push for an earlier appointment.
As above I have changed my diet & exercise regime…the evidence suggests that diet helps with fatigue by not stimulating the immune system – I cut out dairy (don’t like most low fat versions) except cream cheese and yogurt. I cut out refined sugars, processed food and added more variety in grains e.g. quinoa, cous cous, spelt flour etc…I reduced my egg intake (max 3 a week) and watch how much fish I eat (max 2 oily fish a week). I also take supplements – vitamin D (be careful as too much can affect your liver so tell your GP or specialist), omega 3 & 6, B12 and slow release vitamin C (be careful again you don’t want to boost your immune system). This diet (I’m not that strict when going out but I try am stick to it as good as i can) is based on the theory that animal protein can leak from your gut into your body and your immune system attacks those but then gets confused and attacks the myelin in your brain as they look similar…diet is very tricky to test since you can test it with a study like medication…but anecdotal evidence suggest it works & agree since changing my diet I am a lot better on a daily basis and feel better…as long as you don’t go too extreme nothing wrong with being healthy 🙂
Exercise wise I go swimming and do body Balance – I also start my day with 10 min of stretching (sworkit app is great for that) to help with stiffness.
I found that panning ahead – meals, daily routine, fixed (somewhat) bedtime etc help a lot too. I recent,y took part in a self-management course the MS Society is testing and this was great too…these are current,y being tested/piloted in Scotland but hopefully will be run more widely soon. I also attended a meting of my local MS social group which was nice and the other people from the self-management course agreed to meet up again too.
One last thing – I also started to go to counselling – this was offered by my employer and has been great to have an outlet and discuss feelings and issues I don’t really want to discuss with my partner, friends or colleagues. It took me 2 1/2 months to sign up for counselling since I was way to overwhelmed but now it has been fantastic.

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