This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello everyone.
I'm des. I'm not new to online forums, but this is my first MS one. I'm in my mid 30's, live in Western Canada, and I'm a Christian, and a wife. No kids.

I was diagnosed with MS in February this year, with multiple lesions in my brain and cervical spine.
My initial symptoms have been extremely mild (yay!)
It started with a numb band across the front of my torso. That went away in a few weeks, and then my fingers went numb. That mostly went away in about six months. I also developed what I now know is called L'hermitte's sign. That last one has hung around and is more obvious some days, but nearly gone on others. Heat is definitely not my friend! More recently I had some numbness on the front of my thighs for a few days, but that seems to be gone now. Initially I didn't see my doctor as I thought maybe it was a pinched nerve or something. But once I did, he sent me off to a neurologist immediately. I have some problems with tightness in my upper back and neck and constant barometric pressure headaches and have had fatigue for a long time. So I really had no idea it would be anything more serious.

So I am glad my symptoms thus far have not really affected my quality of life. And I'm not even sure if the fatigue is related or not as it's been ongoing for a long time. I'm still walking through the grief process of the initial diagnosis, but definitely much better than I was for the first couple of months. I'm not on any meds, and the Dr. I saw at the MS clinic would prefer not to put me on anything right now. I'm glad for that as I'm not a fan of prescription drugs. They tend to do more harm than good. So the longer I can stay off them, the better!

The initial neurologist I saw is young and did not handle my case well at all. The one at the MS clinic is better. And my GP is very supportive and open to whatever course I want to pursue. He even tested my vit. D levels even though Dr's are being discouraged from doing that because it's an expensive test. Yep, it's low. 71 in the summer even after taking pills daily and getting sun whenever it's out (which isn't much here this year! lol)

I'm looking into some diet changes. In particular some form of a modified low carb diet, which I've read can be really good for MS patients. I've done low carb (specifically Atkins) before so I know the ins and outs. But this time around I don't want to do it in an "extreme" way, just a way that might help my overall health. I've still got a lot of research to do. And I want to plan this carefully so I'm only eating non-medicated, hormone-free meats. That's a lot of work to sort out! Plus, it can be expensive, so that's another consideration.

Before I got my diagnosis (which took a year due to the long waits for MRI's here), I started seeing an Atlas chiropractor. He specializes in all things neck related, included muscles, tendons, blood flow, posture, massage, personal training, etc. I'm impressed with his work even though I've always hated chiropractors in the past, lol. There could be some interesting treatments to pursue regarding neck issues and blood flow and he's very open to that.

Anyway, that's my journey so far. I'm researching and keeping an eye on things out there like the CCSVI research. SO much to learn!
I look forward to getting to know you guys.

Nice to meet you Des, I'm from West Canada too, in my late 30's (ok on my last year lol). I'm a Christian as well, wife with 3 kids, dog and a father in law!.

I've yet to be diagnosed however my doctor is suspecting it. I am not looking forward to the loooong diagnosis time, or tests to be honest - had my head MRI and it came back "normal" with some comments.

I'd like to hear more of your story if you'd care to share... like how this has affected (or not) your faith, how you cope daily, how often your symptoms come and go...

thanks for saying hi!

Hey nice to meet you too! Lovely weather we've been having this "summer", isn't it? lol

I'm sorry you're going through this too. Not fun. That is really great that your MRI came back clean though. It's a good start. What are your symptoms? Did they MRI your neck too? Did they use contrast?

I'm happy to share more of my story. I've found discussing health issues on forums over the years tremendously helpful both for finding support and finding new medical options to check into. Online advice must always be taken with a grain of salt, of course. But it's still a wonderful resource.

Daily coping is just a progressive thing. The first couple of months I felt like I was in a fog, which I'm sure is normal. My GP never let on if he suspected MS. My neuro briefly mentioned the *very slight* possibility of MS, but spent much time reassuring me that it wasn't. The MRI's took six months each to get in to. So after that I finally got my diagnosis and was totally shocked. I'm definitely in a better place now, though I'm sure there are more stages to work through.

My current state of adaptation is considering health issues that come up and evaluating whether they may be a "new symptom". Logically I know they're probably not. But I can't help but wonder. I have a lot of health issues already. So it's not fair to assume anything is the MS. It would be better if I had a reliable medical people that I could discuss these things with. Unfortunately our medical system just doesn't offer that. So I do what I can on my own and leave a message for a nurse two hours away if anything really serious comes up.

Symptoms are pretty much as I described in my first post. The only ongoing thing is fatigue and sometimes the L'hermitte's which doesn't bother me much.

As for my faith, what I can say for sure is God most graciously prepared me for this in some ways that I could never have imagined. He has opened my eyes more and more to His sovereignty over the past decade or so, which brings me such comfort and peace that I cannot even express in words.

So the first thought that came to my mind after my diagnosis, as I sat in my car gathering myself to go back to work, was that none of this is news to to my mighty Creator. He has a plan with a glorious end game, and this was always going to fall into it. Don't get me wrong, this is still something that hit me emotionally and has made me cry (and will so again, I'm sure). But not in a hopeless way - not for one minute. My deepest desire is that Christ will be glorified in me through this illness, whether it be through my weakness, through divine miraculous healing, whatever is His plan. I am at rest in that and look forward to what He has in store. I am also blessed with a loving husband who is a natural caregiver, and I know that's no accident.

Please do share more of your story if you are comfortable to do so.
Hugs,
des

Good evening Des et el,

My symptoms hmm do you have an hour lol! okay here goes: numbness in my left arm and left leg sometimes in my right arm, nerve pain in my legs, legs feel like lead and jello ( kinda like jumping on a trampoline then when you get off trying to jump on the ground kinda feeling), grey spot in my left eye, headaches, numbness in my left eye and pain, urgency to pee, weakness on left side especially my left hand (can't squeeze a dishcloth out), intolerance to heat - just makes everything worse, achy legs especially after climbing a hill or stairs makes them tiredish, sore toes (weird I know) balance issues (sometimes feels like I'm walking on a canoe in the water), clumsiness like dropping things and tripping (and it's not funny anymore!), and then there's fatigue! I'm sure there is more, oh and I have a seizure disorder ( complex partial seizures and nocturnal tonic clonic) oh and new symptom is cramping in my legs (OUCH!) besides that I have failed 4 neurological office exams... I for the life of me can not figure out why my MRI is normal I also am having "good" days that are not symptom free... they are just less intensive than "bad" days. Of course not all these symptoms are there together at one time THANK GOD!

My doctor is so compationate and empathetic - he said "it very well could be your seizure meds side effects... I reminded him I have had these symptoms before meds... he frowned. We were hoping that the symptoms were related to my seizures and would go away when stablized on meds... nope they didn't and they seem to be progressing... it's been about a year now. Started with really bad migraines, then numbness in my left eye following some deficits in my cognitive thinking and weakness on my left side - he thought I had a stroke. Nope didn't said the non contrast ct scan - oh my MRI was non contrast as well.

Then in January something really scary happened, I had a flu for like a day, in the middle of the night I could not stand the pain, comfortableness in my legs they just didn't want to stay still, I moaned and groaned all night my husband said. the morning came and I could n't walk - my legs felt like Jello and that has continued today. For some reason in the back of my mind I though MS, not really knowing much about it just that I have a client with MS and thought to myself ... I feel like she looks like when she walks...

I just need to remember Jer. 29:11!

Weather in BC has been umm ... ya that's all I have to say lol

Our medical system does need some adjustments eh! My doctor and neurologist was a God divine appointment! For that I feel blessed! Because for a few years now... well lets just say I've had my run ins with the hospitals and doctors... ugh!

I agree with you on your last paragraph - I've been thinking, through all the people I've come in contact with from the testing and my devotional today really spoke to me - "Through the testing of this ministry you glorify God by your obedience to the confession of the gospel of Christ and by the generosity of your sharing with them and with all others." 2 Corinthians 9:13 (NRSV)

You are a blessing Des, and thank you for your post - it is such a confirmation to me!

ok.. I've gone on long enough... have a great evening and hugs back!

And you are an encouragement to me!
Great verses, btw. You know I've found with other health issues (particularly those where my life may have been in danger) that have come up over the years, there is a time when we are in "the lion's den". It's dark, it's scary, it seems impossible. But there we are in the very presence of God. It's an incredible thing that we don't experience until we're brought so low sometimes. That, I really treasure.

Sounds like a lot to deal with on your end! I can see why you are suspecting MS. Lots of similar symptoms there. I'm really wondering why you haven't had a contrast MRI yet. I would think that would be the next step. The MRI without contrast could be missing things. I'm also wondering if your veins are messed up as seems to be the case with so many people with MS. (I haven't had the ultrasound yet as I have more research to do before considering that course. Plus, it ain't cheap!).

That is wonderful that you have a good GP and neuro. What a blessing! My GP is helpful and open to trying new things. But he doesn't know a whole lot about MS. That may change as he has other patients with it too. Sadly we don't have options here as there are only two neuros and they are both horrible. LOL I know what you mean about hospital doctors. I've had my problems with some as well. I think a lot of that has to do with the failing medical system. They get burned out and stop caring because their hands are tied in the majority of cases. My doctor is young enough that he knows some tricks to work the system. If it weren't for that, it would likely have been at least two or three more years before I'd have had a diagnosis.

I'm curious if you are following any diet plan or if any foods seem to be triggers for your symptoms. I know a few of my triggers. Heat is an obvious one. Wine can be a bad one too, so I tend to avoid it now. Stress can be an issue too, so I've started making some changes to help ward that off when possible. I work part time and my employers are tremendously accommodating and supportive. So that's another huge blessing.

Are you involved in a church family? That's so important for us all the time, but especially when we are struggling. We're still pretty new to our church, but they have been incredibly supportive.

Hi Des,

I hope you're having a quiet and relaxing day - I'm sorry to hear you've had some life threatening health issues. Do you mind sharing with me what those are, I'm wondering because I've had a couple of heart attacks and I think hmm, is this related?

I'm curious what you mean when you say " I'm also wondering if your veins are messed up". I don't know? How do you tell? Could you tell me more about the ultrasound idea? Where are you located? I'm in BC so my medical pays for ultrasounds.

Well today I visited my eye doctor and he suspects I have optical neuritis he knows for sure my nerves are not inflamed at this time and that I have a tremendous amount of "floaters" in my left eye with all the symptoms. What that means - I have no idea! He's concerned that my symptoms are worse in the heat and is sending an urgent report to my GP and Neuro. he says "I don't want to scare you but..." lol I don't think I can get scared now! Sorta a relief that I'm being taken seriously!

My doctor is young as well and I think he's pulled a few fast ones to get me to where I need to go quickly - perhaps it's his size LOL.

Diet plan, not really - just try to eat as healthy as I can, I haven't noticed any food triggers - that is something to think about, thank you!

I know I have a milk, wheat and sugar allergy so I tend to stay away from those things... dairy is really bad! That actually may be a trigger eh!

Oh I hear ya on the stress thing... I just recently quit my job, and cleaned my entire plate off! I do nothing and I plan to keep it that way for about a year! I homeschool my two still at home boys so... that for me is enough!

We are part of a church and I have some very supportive friends, those who weren't or have some unhealthy tendencies in their lives are now on my sidelines for now - helps with the stress thing too eh! God is amazing at how he "cleans" our lives.

Do you find your short term memory an issue? I can't seem to remember very short term things... and some longer short term. I have to write EVERYTHING down!

I quit my job for a few reasons, mainly I heard God telling me my ministry is in my home looking after my family - cool how he works eh, I don't think I could go through a diagnosis/health issue and work right now. My job (counselor) took too much out of me to be able to go through all this. Besides my 16 yr old son was diagnosed with an arrhythmia that he's going to have surgery on the 27th to fix it. He needs me to be attentive to him, I need me to be attentive to myself.

have a good night my new friend
[/i]

It's the last day of my work week and I get next week off. Technically I don't have vacation days left as I had to use them taking care of some stressful extended family obligations. So they told me to take another week. As I said, I am so blessed! Today was just a few things to get the office ready for my absence, so yep quiet for sure. And I'm SO looking forward to sleeping in whenever I want to next week! lol

You're very young to have had heart attacks already. Have doctors suggested it's anything related to your other symptoms?

Well I've had some sort of undiagnosed problem that caused me to have PVC's (heart palpitations) non-stop every few seconds for about six months strait. Some of them were the more dangerous kind, though not too many. I did end up in emerg. once, but they sent me home with no idea what was causing it. All during that I also had large amounts of adrenaline pumping through me which feels horrible and is really not good for you. I never got a medical reason why it happened even after seeing a cardiologist and going through a ton of tests.

A few years before that I also had a very bad gallbladder that went undiagnosed (again, there's that failing medical system! lol) until I ended up in emerg. with stones stuck in the duct and turned me a nice deep shade of yellow. The surgery itself was very long and difficult. But God decided it wasn't my time, so here I am!

I'm in BC too.
I'm talking about the doppler ultrasound. It's a specific kind that looks at the veins in your neck, blood-flow, etc. You can't get it at any regular medical clinics or hospitals in BC yet. The only one I've found so far is the False Creek private clinic. They're expensive, but there's no wait time. They do MRI's etc, as well. And they have an excellent reputation over all. But then a friend of my sister's went there and said they didn't really see any major problem with her veins. So then she spent her life savings and flew to Poland for more detailed testing and ended up having the surgery for CCSVI. So she doesn't recommend False Creek and doesn't feel they're thorough enough.

InHislove wrote:

Well today I visited my eye doctor and he suspects I have optical neuritis he knows for sure my nerves are not inflamed at this time and that I have a tremendous amount of "floaters" in my left eye with all the symptoms. What that means - I have no idea! He's concerned that my symptoms are worse in the heat and is sending an urgent report to my GP and Neuro. he says "I don't want to scare you but..." lol I don't think I can get scared now! Sorta a relief that I'm being taken seriously!

I hear ya! Sometimes it's like you just want to say that to the doctor! "I don't want to alarm you BUT there's something really wrong here - now can you tell me what it is and how we can fix it??"

InHislove wrote:

My doctor is young as well and I think he's pulled a few fast ones to get me to where I need to go quickly - perhaps it's his size LOL.

Diet plan, not really - just try to eat as healthy as I can, I haven't noticed any food triggers - that is something to think about, thank you!

I know I have a milk, wheat and sugar allergy so I tend to stay away from those things... dairy is really bad! That actually may be a trigger eh!

Ah, yes dairy is not my friend either. Allergies cause inflammation and are an immune overreaction. I can't help but wonder if they're related to this whole thing.

InHislove wrote:

Oh I hear ya on the stress thing... I just recently quit my job, and cleaned my entire plate off! I do nothing and I plan to keep it that way for about a year! I homeschool my two still at home boys so... that for me is enough!

Wow good for you for homeschooling! But you were working too? That's a LOT of work! Homeschooling alone is so much work. Sounds like a good decision to quit your job and focus on that.

InHislove wrote:

We are part of a church and I have some very supportive friends, those who weren't or have some unhealthy tendencies in their lives are now on my sidelines for now - helps with the stress thing too eh! God is amazing at how he "cleans" our lives.

I now have "Refiner's Fire" running through my head. Hehe.

InHislove wrote:

Do you find your short term memory an issue? I can't seem to remember very short term things... and some longer short term. I have to write EVERYTHING down!

Definitely. Though I don't know if it's related to MS. I have really messed up hormones and there are weeks each month where I'm in a fog. Actually thinking about it more, I have a number of things that I go through each month that I've always blamed on hormones, but maybe they aggravate the MS. I get clumsy, weak, moody, depressed, and my brain just doesn't work properly. It's like I'm a different person. I'm a very logical, controlled person normally, so those weeks are SOOO frustrating! And ya, I am a post-it note junkie. Not that it always helps cuz I loose them sometimes, lol.

InHislove wrote:

I quit my job for a few reasons, mainly I heard God telling me my ministry is in my home looking after my family - cool how he works eh, I don't think I could go through a diagnosis/health issue and work right now.

Awesome, and you will be blessed for that. Ministering to our families is a special privilege and an incredibly important responsibility. When I got married I was working full time, and the job took up a lot of my life. It wasn't just a job you forget about when you go home. It made caring for and supporting my husband the way I really wanted to basically impossible. So after I lost my job (won't get into that mess, lol!) we decided it would be better for me to work part time as long as we keep afloat financially. It's been fantastic for our marriage and much better for my health.

InHislove wrote:

Oh, that's coming up pretty soon. Will say a prayer for him. I'm sure it means a lot to him that you're there for him through this.

Have a lovely evening!

Wow, I had an after thought about your symptoms. They remind me of my aunt who was misdiagnosed with MS a few years back. She eventually found a good neuro who told her it's definitely not MS. She has had nothing but clear MRI's. He believes it's Hereditary Spastic Paraplegia. There is testing available for the genetic mutation that is associated with it, but it's tough to get approved because it's expensive. Once her kids started showing the same symptoms she got approved for the test.

Anyway, the symptoms seem to be quite similar to many of yours, including the eye issues, leg issues, and seizures. Could be a wild goose chase, but I think it's worth testing for if your doctors will go for it, at least to rule it out.

http://www.ninds.nih.gov/disorders/here ... plegia.htm

wow, that is something to look into... thank you so much! Not sure which I'd rather prefer though lol

Glad to help! But ya, I understand. It's not a good diagnosis as there's not much to be done for it at this point. But a diagnosis is certainly a start and better than being in the dark. At very least it would be good to rule out.

Wow Des - this sounds so similar! You're correct, I am too young to have a heart attack! It was the "medical system" actually I'm going to come right out and say it was the negligence of the attending ER doctor! I first went into emerg one January with heart palpitations that went on for about 1 hour before I got there then continued for about another after. I was sent home and asked to see that doctor the next day in his office - he immediately started testing and diagnosed me (eventually with PSVT). However before I was diagnosed I was in the emerg again seeing a different doctor this time the episode was much more intense and longer (4hours), the doctor insisted I was having a panic attack (I was not) and gave me Ativan. To his surprise it didn't work! He gave me beta blockers and something else for the heart and it stopped. It was explained to me by the doctor who confirmed I had a heart attack, this happened because some of my heart muscle died due to the lack of oxygen during the extended PSVT episode ... it was allowed to go on too long. Sad but true!



I'm so sorry to hear you have had to suffer due to the failing medical system! I'm so thankful that God had decided it wasn't your time, now we get a chance to chat

I had a chance to look at the link you gave and googled Hereditary Spastic Paraplegia - thank you and I'm going to bring this to my doctor as a suggestion and see what he does with it... I'm going to also ask one of my family members - they work in a research genetic testing facility. Perhaps they could help in some way

Happy to help!

Yep, I was sent home with Ativan too during my PVC's. Useless stuff. I think sending people home with that stuff is code for "it's all in your head, ya fruitcake". So pathetic. They lasted non stop for about six months and slowly tapered off so I only get them very occasionally now. Apparently there's nothing wrong with my heart, but they have no idea what caused it.

Hahaha I agree!

LOL, and I must indeed be a fruitcake as Ativan gives me hallucinations!

You too!? It knocks my socks off for a few days!