Dx rrms but very scared its ppms. Opinions needed.

[Pktpkt]

Hello. I am new on this forum and I must say I am quite impressed with The overwhelming amount of information available here. I live in Ontario Canada. I'm a 39 year old male. I have sole custody of my 3 year old daughter from a previous relationship. I was married in the summer of 2013. And I'm a nervous wreck going through hell at the moment. I own a moving company that is well-established and very busy. I do mostly administrative work. This allows me to work from home.

I remember having shooting back pain going down my left leg as far back as the summer of 2008. This shooting pain lasted for at least three years off and on. Now it's gone for the most part, but if u keep reading, some things have gotten worse. It was manageable to an extent. I went for an x-ray in 2010 and was told it was at a stage one degenerative disk disease. They advised me to go see a chiropractor, which I did, and it alleviated some of the symptoms but didn't really make it go away. Over the next couple of years my back pain remained, but in 2011 I had some weird symptoms during the summer. My speech was slurring, I had a numbness when I would stand up, (the numbness was starting in 2010), and I felt my legs dragging. I went to emergency at the hospital and they did a cat scan, said I had no stroke. That was it. I left. Lost about 60 pounds over the next 6 months. Started to get in better shape, and the symptoms subsided. Just some manageable numbness from a sitting to standing position is all I felt for the next year until the summer of 2012. I was going for a long walk in the summer of 2012 and noticed my right foot went completely numb and Iost my feeling (foot drop). I needed to sit and rest to complete my walk. It was during this summer I had obtained custody of my daughter, and I didn't really notice anymore symptoms of any sort (aside from the lingering numbness when I would stand up). This now brings us to 2014 where after the spring I started noticing and paying attention to my inability to balance myself on 1 foot very well. This is followed by uncoordinated legs at times and more foot drop that seems to occur when I walk in any lengthy distance. I have a weakness in my right ankle. My legs feel tired and fatigued if I'm standing and moving around for too long.

I saw a neurologist this summer, went for an MRI on my head, and was told it could possibly be MS. I then went for an evoke potential test which i passed, went to the MS clinic in Toronto and they said I have relapsing remitting. They also said they're curious about my spine. So I have an MRI scheduled for my spine next month. I have some days where I feel fine I have other days where I feel a dull aching in my back. My balance is great some days and not so great other days. The numbness comes and goes. Some days good, other days not so good. Some days my knee caps tingle. Other days it doesn't.

They have prescribed me Aubagio which I start tomorrow. I'm terrified. Im researching stem cell therapy. I'm up and down with my depression and my overall mood. I'm going for acupuncture right now and I have some supplements from a naturopath which has helped some of these lingering symptoms. Basically I'm terrified.

Can anyone give me some input as to what this all sounds like?

[jimmylegs]

hi and welcome. to me, every inquiry always sounds like optimizing nutritional status would be a good step to if nothing else rule out any possible issues that might be related to nutrition alone and therefore possibly clouding the docs' ability to see the real list of things that he or she should be looking at in order to diagnose and treat.

so, if you ever have questions about nutrition i can help. glad to hear that lifestyle change and some work with the naturopath has resulted in some improvement.

[Pktpkt]

Ok thanks for the reply. I should say opinions needed instead of advice needed in the thread title.

[jimmylegs]

if you like, you can fix it if you go in and select 'edit' on your first post in the thread

[Pktpkt]

Ok thanks. I edited it. My biggest fear is that it's progressive. Do these systems sound like rrms? My remission lasts for a few days, then right back to some symptoms again. My head MRI had 2 lesions. Up until a few months ago when I started googling my symptoms, I didn't really know what MS really was. I excersise 4 days a week and I deal with leg fatigue and a weak right ankle. On the treadmill (I walk and don't run) I find myself working on centering myself with balance. I notice a little bit of foot drop starting but it then goes away once I cool off.

I'm honestly in a state of being terrified. This whole thing is happening so fast. I'm starting Aubagio tonight.

[jimmylegs]

progressive symptoms don't resolve and then reappear. that's consistent with the definition of rrms and inconsistent with the definition of ppms. technically i am dxd rrms but i have permanent symptoms that don't resolve. so that's either the leading edge of ppms, or some other kind of permanent damage. i choose option 2.

early days are VERY scary and frustrating, BUT things will settle. basically as urgent as things feel, you're in a long haul situation. frustrating as hell when you are looking for early answers, but every case is it's own animal and no one can tell you specifics about what to expect, beyond stats.

may i ask what the naturopath tested, and which supplements you've been put on?

[Pktpkt]

It's so hard for me to tell if these are lingering symptoms, or if they are getting worse. Or is this MS crap so much in my mind that everything is playing with my mind. I really don't know. My knee caps were tingling 3 days ago and has now stopped. I'm still very uncoordinated with my legs. I can't skip or kick a soccer ball the way I could.

The supplements are: vitamin D3 drops (5 drops a day), ginko forte, curcumin 400 mg (which has helped with the numbness when I stand up, b12 5000mcg, and Omega 3 EPA/DHA 3:1

[jimmylegs]

hi again yea even when you feel like your mind may be playing things up, it's probably best to pay attention and do what you can to work on symptoms.

so these vit d3 drops. do you know how many IU are delivered per drop? i'm assuming it's 1000 but would like to know for sure. the b12 @ 5000mcg, what time of day do you take that?

on a related note, any issues with sleep patterns?

just as an fyi, in the early days the regimen that did me the most good involved a LOT of b-complex and vit C and vit E, together with a high quality multivit/multimineral. i wish i had taken the suggested higher dose minerals as well; i might have been even better off over the long haul. it was an old protocol so there was no vit d recommended, but given what we know these days it would make an excellent addition, as long as it was properly balanced with its mineral cofactors.

[Pktpkt]

Hey there. Yes each drop is 1000 IU. They recommended I take 5000 IU per day. In terms of the vitamin B12, I'm still experimenting which is the best time of day to take it. I find when I take it in the morning, I get tired in the afternoon. Like it wears off or something. I'm still experimenting with that.

[jimmylegs]

did they check your magnesium status before prescribing 5000IU per day of vit D3? my pharmacist advised magnesium twice a day when taking vit D3. it made my life so much better. you take some at the same time as the D3 and another dose at a separate time. before that advice, i thought i was going to die - pretty scary :S

with b12, the afternoon might be better. b12 affects circadian rhythm and taking it in the morning would tend to interfere with your sleep.

[Pktpkt]

What type of improvements did you see with magnesium?

I've read magnesium is good.

[jimmylegs]

it is good

first of all, in hindsight my mag levels had been low all along. then i drove them down further inadvertently, through imbalanced supplementation with vit D3. (i took magnesium with the d3 all along, but not enough and not properly timed in relation to my d3 intake).

the worst symptoms were severe problems with my throat. it would freeze mid swallow. spit went down the wrong way and i would be unable to clear it. i felt like i was drowning and that i would just die unable to breathe, frozen in the middle of taking a sip of water or a bite of food. i organized all my stuff so that it would be easier for my family to clean up after me when i died. i was in for a chest xray when i popped in to the pharmacy for something else. i didn't even ask that pharmacist about what to do for my cough, he just grilled me instead of answering my actual question that day, and about 5 questions in he told me how to fix my throat with proper d3/mag dosing and timing and it got better in TWO DAYS. and then it took me a few years to get levels built up properly. to this day though, if i am not careful to keep my mag up i will notice i have to clear my throat more often (at least i can do it effectively these days).

along the way, among other pleasant side benefits i noticed my general status quo anxiety disappeared, and i got to be calm at rest for a change. my spastic muscles calmed down. i could take a proper deep full breath again. all kinds of seemingly unrelated things. now if i feel a headache coming (rare nowadays), i take magnesium instead of pain killers and it goes away. it's a very nice change

[Pktpkt]

I should look into Magnesium.

The toughest this I'm dealing with right now is the fear of wtf I have as being progressive. I've started Aubagio for 2 days now, and the radiating, hot, tight pain is still in my back. It's not going away. I have other symptoms that come and go, but this back thing is too much to deal with.

I need answers.

[jimmylegs]

i'd send you a product link but apparently their web site (orange naturals) is down atm!

[Youarethecure]

Do your best to try and relax. I know that sounds hard but you have to.

Getting all worked up and stressed is hands down only going to make everything worse. TRUST ME.

It most definitely sounds like relapse remitting and not progressive. But that doesn't mean symptoms need to stop or get better. Also that medication is to limit relapses, I don't think it should have any effect on current symptoms.

I was in the same boat as you last year this time. Depressed, scared, confused, and angry. You can pull yourself out of it if you want. Find the silver lining to all this. I am male too, but only 25. I was diagnosed early this year.

Learn all you can on what you can do against this disease. Medication, diet, exercise, nutrition, and lifestyle all can contribute to you feeling better and getting better.

There is not a short term answer, we are in this for the long haul. You have to learn to endure the bad times..... and most importantly enjoy the good times.

We have every right to be angry, scared, and depressed. But what is that going to do for anyone? What is that going to do for your (I bet super lovely) daughter?

LEARN all that can be learned about MS and you should find that this is not the end of the world. You will see it is manageable to live with.

I hope the best for you,

Chris