This Is MS Multiple Sclerosis Knowledge & Support Community

Thanks for your post. These symptoms are coming and going. Like back pain is a 10/10 for 2 days, then a 2/10 for 3 days. Up and down, up and down. I feel stable on my feet one day, unstable on my feet another day. Leg fatigue one day, no fatigue another day.

I feel like a yoyo over here. Lol. I hope it's not progressive. I need enough time for stem cell therapy and discoveries to catch up to us.

I'm not looking forward to my spine MRI next month. I have 2 lessons on my brain (doctor says 1 might not even be that). Then the other doctor says "I'm suspicious about your spine." Saying this based on my symptoms.

Hi Pktpkt-

I know exactly what you're going through as do the majority on this site. When I was first diagnosed, I was in pretty bad shape. I woke up one morning with the right side of my face drooped. My husband thought I had a stroke, but I had no symptoms associated with it. We then thought it might be Bell's Palsy, but decided to head for the hospital to make sure. They did an MRI to rule out anything suspicious and upon my return to the emergency room, the doc said it looks like MS. Needless to say I was devastated by the findings. My symptoms included dyplopia (double vision), loss of balance, and horrible fatigue. I felt like I was walking through pea soup! In all honesty, I was not really scared, as it explained a number of medical anomalies I experienced over a period of several years. Once I had a firm diagnosis, it was easier to move forward. I had good days and bad ones which is still the case now. Such is the case with rrms!

Currently, I'm taking Tecfidera after much trial and error. I was first on Copaxone, but found out I was a non-optimal responder. I was having relapses every few months while on it. I then was put on Rebif, which did it's job for several years. I got tired, however, of the side effects and being a human pin cushion. I was very lucky with the Tecfidera as I did not experience the side effects I've read about. I'm also thrilled it's oral. So far, so good. I had an MRI back in September on my brain, neck, and lumbar spine as I've had a lot of lower back pain. No new lesions, but I do have a couple on my C-spine and one lower, which have no doubt contributed to my walking difficulties. For the back pain, I'm taking neurontin (gabapentin) which seems to help a lot. I'm also now on ampyra, which has been a God-send. It has helped my gait tremendously as well as balance and ability to walk longer distances. While I still have some symptoms, I have to say I'm better overall.

Sorry for the novel! I hope this helps with your anxiety level.

Thanks for that post.

My walking difficulty also comes and goes. One day easy, another day it's off.

I don't know if it's because this MS stuff is so in my head now, but I had some cheese today and felt off balance all of a sudden. However 2 months ago before I even had my MRI, I didn't notice anything like that. Now my fear is, is that because it's really progressive, or is it in my mind so much that I feel this way?

Regardless, it's a roller coaster ride. I'm swamped with resposibilities as I'm sure others in my situation also are, and it plays with my mind. I feel like I'm getting better overall. At least I hope I am.

I am glad to hear you are feeling better overall. Just go with it, you ARE getting better. Start making the proper changes and you should be able to feel good again. Diet, exercise, nutrition plus the medication you are already on should get you feeling good again.

In my opinion with relapsing remitting MS building your self back up after relapses is huge. Physically, mentally and even emotionally you have to be ready and prepared for the next relapse. There are many steps you can take to fight against MS.

Thanks.

So the idea I am gathering here is that it is rrms that I would have by the sounds of it. It is the day to day overall feelings that make me mostly paranoid. The constant up and down.

Like you said, its a rollercoaster. Might as well enjoy it as best as possible.

Enjoy the good times, endure the bad times KNOWING it will be better again.

Yes, attitude is everything. Depending on the severity of your symptoms it may take several months or longer to recover from a relapse. When I was first diagnosed, one day I just woke up and realized my vision was better. Balance, however, was still problematic. I did some physical therapy to reteach me how to walk, as I was spending a lot of time looking at my feet. It WILL get better though perhaps not on your schedule. One day at a time I say!

Froggie wrote: Balance, however, was still problematic. I did some physical therapy to reteach me how to walk, as I was spending a lot of time looking at my feet.

Thanks for this Froggie. This is one of the issues I find myself dealing with too. It's unpredictable for me. Some days it's worse than it is on other days. Simple things like going up and down stairs without using the railing, or sending a text message while coming down the stairs, without the need to mind your balance and footing. These are things that I never did think about before and now feel like it's a focus of mine.

I wore ankle high boots yesterday while going out for dinner in a restaurant and I felt like my legs were so heavy and my balance was subject. I keep my lips sealed about my MS status, as just my wife, parents, and 2 close friends even know what I'm going through at the moment, and needing to focus on my balance while coming up and down the stairs at an upstairs restaurant was frustrating. I feel like a busy crowded Saturday night restaurant is too small for my steps. Cutting through the crowd to get to my seat or go to the washroom is a daunting task. It's frustrating.

Some symptoms like cramping calfls, restless legs and mild twitching while laying down has gone away. Cognitive focus has also improved, but my biggest lingering issues have been balance, fatigued legs, dull back aches and occasional foot drop when my legs are in motion for any extended period.

Did you think physical therapy could help me Froggie? That's a very tempting option for me.

I hate stairs too! It's not so much the walking part as it has to do with my vision. I have limited depth perception and some color blindness also. Trying to decipher anything that's mostly grey is futile.

I would highly recommend physical therapy. They can see your gait as well as how you're putting your feet down while walking. It can be extremely helpful to have someone else take a look. Some things you already know- for example, I have spasticity in my right foot that gets worse when I get too warm. I have difficulties walking when the weather gets hot. A good PT, however, may be able to see areas that need improvement and make recommendations for you. Worth a shot.

I have to admit there are times I feel everyone is looking at me, especially when I'm having a bad day. You are going to run into people that are less than empathetic to your condition. That's when I say it's their problem not yours. Hang in there! Things will get better.

Something I'm dealing with that is driving me nuts is a lingering feeling of fatigue/weakness/numbness coming up the inside of my right leg and knee. It's so hard to gauge if this feeling comes and goes, or if it's getting progressively worse.

Well I get my spine MRI next week and that should tell me the story here. I google the name Alex Normandin and I cant help but to feel like there is hope.

My MS clinic results on my spine MRI won't be given to me until I do a follow up visit in May at the Toronto MS clinic. I have a pain in my upper right abdomen and I did call the clinic today to inquire about it possibly being related to Aubagio that I have been taking for 3 months now. The nurse advised that I go to the doctor to get it checked out.

She did disclose to me over the phone that the notes on my spine MRI says that there is MS in my spine. This compared to the one lesion I know of in my brain has me worried now. I'm 39, I'm at a 1 on my EDS score, i have some symptoms such as leg fatigue and occasional drop foot, along with a little poor balance and an unsteadiness on my feet. I also have urgency to urinate when the time comes. Ive been sticking to a swank diet 99% of the time, and I'm on a wide variety of supplements given to me by my naturopath. I'm also in physiotherapy and I have felt slight improvement with my overall lingering symptoms.

I'm very interested in HSCT. Im strong, I exercise and I refused to deteriorate. Luckily Im in a position where I can afford HSCT. But with so much information out there i don't know where to begin to search.

Can anyone provide me any direct links to who I can contact to get this procedure done? So many people on this website seem so knowledgeable and I would really appreciate your assistance.

I don't give a rats ass if my condition is PPMS or not. Im not going to wait to find out.

hi there the waiting game sucks doesn't it good that you are feeling proactive!

the orange naturals site is working again : http://orangenaturals.com/essential/mag ... g_60v_cap/

curious what the naturopath has got you on supplement-wise, altogether?

What really sucks is me turning 40 this year, having sole custody since 2012 of my 3 year old daughter from a previously relationship (im a father that fought hard and paid big in family court to beat my dead beat ex), getting married to a beautiful woman 11 years younger then me in 2013. having a healthy savings, a successful businesses, having all the ambition in the world to expand into other business, then getting rocked by this bullshit last summer.

For the 3 required hep a/b vaccine shots to be fully vaccinated....I foolishly started the 3 shot vaccine process 3 times in the last 2 years. I didn't finish the 3 shots to be officially immunized on any given time...so I started again before my next vacation. And then I started again...and then I started again...going for whatever protection I could get before my vacation but not being fully immunized, only to not follow up with the two remaining shots when I returned from vacation THREE TIMES!! I feel like a fool. I've had some symptoms over the years dating back to when I was 25 years old I remember tingling in my chest. I've partied in my life so maybe I didn't notice the symptoms as much, but no doubt the hepatitis vaccinations was a kick in the ass to get the symptoms really going. No doubt about it!

The supplements I am on are-

Curcumin
Vitamin D
Ginkgo
Creatine
Co Q10
Omega 3
Flax seed oil
Magnesium
Ginseng
B complex
Multi vitamin
Magnesium oil

I'm sticking to the Swank diet 99% of the time. I'm also on Aubagio. And I make 3 smoothies, 3 times a day. Each smoothie contains one cup of kale, one cup of asparagus and one cup of berries. I mix in coconut water.

...anyways I'm getting the stem cell treatment done. I'm not going through this without a no holds bared serious scrap. Fuck that!

One (maybe 2) lesions in my brain and MS in my spine means one thing to me....PPMS....or soon to become.

ok that's a nice list of supplements.

can i trouble you for details of the supplement forms, and the amounts of each taken daily?

are the symptoms you mentioned the other day (fatigue, balance issues and so on) pretty much everything physical/neurological that you are dealing with atm?

Sorry for the delay. Yes fatigue and balance issues do not go away. I've been sticking to the swank diet but I've been doing it a little overboard by staying under 5 g of saturated fat a day I've now increased it to 9g and find myself having a little more energy....I still get rocked by afternoon fatigue in my legs.

I made a whole list of the company names of my supplements and I can't copy and paste it now which was tedious and is now frustrating. Lol. Anyways just know that they are given to me from a naturopath so they're not exactly drugstore style.