Early February 2013 during a trip in Asia I started to feel brief episodes of unsteadiness and loss of balance. After a couple weeks, this sensation of “feeling drunk” or “floating” was no longer temporary as I was feeling it constantly. I went to see an ENT specialist thinking it could be a problem with my middle ear but he found nothing.
After Asia I traveled to Europe in May (4 months later) where I started to feel pain in my arm and leg muscles. It was the kind of pain you’d feel after doing an intense physical workout like weight lifting. This pain would come and go; sometimes I’d feel it just in my left forearm, an hour later it would travel to both my legs then disappear, constantly changing. This lasted for three weeks and hasn’t been back since, thank god!
After researching my symptoms online, I found multiple sclerosis could be one of causes to my troubles. For this reason, I took an appointment in Paris with a neurologist and got an MRI of my brain (See MRI images attached). Unfortunately, the results were not as I had hoped and the images showed anomalies (lesions). The doctor didn’t have much to say without doing additional tests. On the report, he concluded by saying “These lesions are not very specific because of their number (4) and the absence of any lesion on the posterior fossa.”
I’m back in Canada now and I need to follow up by doing more tests: MRIs + lumbar puncture etc… I’m worried that the health care system in Canada won’t properly take care of me. Its 2-3 months to get an appointment with a neurologist! WHAT! It was 1 week in France! The waiting time for an MRI in public hospitals is 8 months minimum or you need to pay 700$. So I just signed up for a personal health insurance but I had to lie on the form about my symptoms otherwise they would have excluded any expenses related to my condition. I hope they don’t find out I had these symptoms before signing up! It’s when you really need help that it’s the hardest to get! That’s crazy!
The good news is that my symptoms currently are very minimal as I just feel minor unsteadiness. Some days I feel totally fine! I’ve learnt to live with my tinnitus which started 4 years ago and I could learn to live with my current condition if it doesn’t get worst but I might just be in remission waiting for a relapse. I just spent more than a year travelling the world, I’m getting married next year, we bought a house and are thinking of having children soon, I have so much to do and so many projects on my mind and I’m only 32. This is a seriously debilitating illness; 60% of people can no longer walk 20 years after onset.
The neurologist in France mentioned that he had seen these types of lesions just disappear. I’m an optimistic person and I want to think this is possible. I’m also realistic and my symptoms and initial MRI do point towards MS. What else could it be? Is there any other disease that could be responsible? I’m slowly preparing myself for a diagnostic of MS and I’m scared that it stops me from living a “normal” life.
I read a lot of information about multiple sclerosis and lots of people are living well with this disease. You need to exercise, eat well, get plenty of rest; the recipe for healthy living. Some medicines exist to delay relapses but they are not without side effects and cost quite a bit of money. To help with remyelination which can improve some of the symptoms and if you have 20-30k $ lying around, you can go to a stem cell clinic in Central America or Germany (like Jack Osbourne). Also, I believe within the next 5-10 years, we’ll find an actual cure for MS or at least it’ll become easier and cheaper to get stem cell treatment in USA and Canada. 1 to 3 people for every 1000 people will have MS and 2/3 of these people are women so you are pretty special if you get this.
-Have you heard of brain lesions just disappearing? I hope I’m not being too optimistic.
-Are you familiar reading MRIs? Do you have an opinion on the MRIs I’ve attached?
-Have you been diagnosed with MS and you are living well with it? Do you have a secret trick to manage?
-Just in case, I’ve taken a complementary health insurance and a 20 year life insurance so if I get bad news and something happens to me, my loved ones and I can get some extra help. These will be a LOT harder to get after a diagnostic. Has anyone else done this after feeling symptoms? I have NOT yet seen any doctors in Canada about my symptoms.
Once my health insurance approves me I’ll go see a general practitioner to get a prescription for a neurologist who’ll prescribe additional tests and we’ll take it from there. I’ll update this post with my results.
As many will tell you there could be literally dozens of things causing your symptoms. The lesions could be nothing much at all, or caused by headaches or blood pressure issues. Did they do blood work etc. to rule out things like vitamin deficiency or things like Lyme disease. Traveling the world you could have picked up some strange virus that you are slowly recovering from.
I'm curious you said you lied on your health insurance application but plan on seeing your practitioner soon after approval. Are you going to lie to the Dr. about the onset of symptoms too.Are you going to tell your Dr. about the MRI you've already had?
As soon as you tell your doctor you've had these symptoms and an MRI I would think he would make notes in your chart and would then be obligated to let insurance have access to information especially if they suspect something amiss since you are so quickly seeking medical treatment with a neurologist.
I hope you have something very benign and would caution against too many doom and gloom thoughts right now. It's just way too soon in the process with the symptoms you've had to conclude anything.
When I see my GP and neurologist, I'm hoping I can mention the truth without them noting in my file that I've already had an MRI done which showed lesions. I doubt the doctors actually care too much about this. Their main objective is to help their patients.
I guess before telling them about the MRI, I'll try to see how they feel about insurance companies... In the worst case, I don't really need to tell them the truth. I can say my symptoms started a couple days before.
Best of luck to all who are also in the process of getting a diagnostic to their symptoms!
Hi, Arnaud. You have certainly got a long list of questions for us. I don't think I can pick them all off tonight, so let me start with a few points. It appears you are doing your homework about MS with all the numbers you quote.
MS is not a one size fits all disease and every last one of us is different in the presentation. So don't believe the statistics you can find on the internet - most of them are very outdated. The newer Disease modifying drugs (dmd's) definitely have changed the stats on disability.
I am no doctor or radiologist, but I did look at your MRI. The lesions you have could be MS - those four are certainly visible and you probably have more.
When you go to this next doctor, I would recommend you NOT mention MS at all - let the doc do the exam and come up with an independent conclusion. If you begin by saying you think it is MS or that you had that MRI done in France, you are going to change how the doctor reacts to you.
As for the prior MRI, I wouldn't volunteer that information. It is perfectly good to talk about your symptoms from years ago but I wouldn't bring it up unless you are asked directly.
I hope some of our Canadian folks around here will see this and jump in to help explain what works in your medical system. ~Laura
Good advice Laura re: not mentioning MS specifically at the appt.
Unfortunately, it's not possible for the doc to do an accurate and thorough assessment if you tell her/him your symptoms started only days ago. The prior history, which sound like at least two distinct episodes, is critical info to make a dx, whether of MS or something else.
As for the Canadian system, you expressed concern that you won't be properly cared for. I'm not sure why you feel that way; most (polled) Canadians are satisfied with their care. Two months to see a neuro for a serious but non-urgent case isn't unheard of, in Canada or many parts of the U.S. It is great you didn't have to wait in France. My wait was short but I was considered urgent due to severe double vision and they were worried about brain tumour. 8 months for a MRI sounds really excessive but if that's true, you do have the option of private MRI if this is feasible for you. Or, you can be persistent with the MRI clinic and try to get in sooner. Those who are proactive and call and call are dealt with more quickly than those who just sit and wait for their phone to ring.
I'm confused about your insurance situation. Are you eligible for provincial health care as a Canadian citizen or landed immigrant? Is it supplemental insurance you're referring to? Wy did you apply for it, ie what specifically do you hope it will cover, eg meds if you need them?
If you're eligible for provincial health care, and you are dx'ed with RRMS, then you are eligible for coverage of MS DMDs. I don't know what province you're in, but in most cases, you need to apply for a specific supplemental non-group insurance plan (here in Alberta the carrier is Blue Cross). Patient usually pays quarterly premiums (mine are about $200 per quarter I think) plus a nominal to zero co-pay. It's the dx of MS that triggers the insurance process and there are no exclusions due to pre-existing health conditions. It's the very fact that one has had MS symptoms and then a dx that makes them eligible for the program through this insurance to begin with. So they would naturally expect to see a history of symptoms before ever applying for insurance for a DMD.
I wouldn't assume that a physician will be comfortable being put in a position of lying or withholding information from an insurer to protect apatient. I agree the patient is their priority but their medical license is important too, as is complying with insurance fraud claims. Guess it would depend on the particular doc and your relationship with them. I would tread carefully here.
Not sure what I would do in this situation.
I guess I'd go with Laura's advice and see where things go from there.
If you can provide more info about the insurance aspect, it would help us understand your situation better.
I do realise we are constantly improving treatments for MS so the statistics currently available do not reflect the reality for a newly diagnosed person and his/her future with the disease.
It’s good advice not to mention MS to the doctor so they can make more effort trying to figure out what is really going on and I don’t get misdiagnosed.
In the news in Canada, it’s pretty common to hear stories about the hospitals being overloaded, patients suffering while waiting for treatment etc… 2 years ago I wanted to see a GP but my condition wasn’t life-threatening and all clinics I called turned me down saying they didn’t have any more space. I ended up paying $70 to go to a private GP.
I am a Canadian citizen and I’m covered by healthcare here but for example, MRIs not considered urgent take 8 months of more in the public system. By taking a complimentary or supplemental health insurance, I can get an MRI in 2 days in a private clinic which will be refunded. For 60$ a month, you also get numerous other advantages so it’s definitely worth it.
I can't speak to the healthcare system in Canada, but I agree wholeheartedly with Lulu and DV about over-sharing with your Canadian neurologist.
If you enter talking, you run the risk of the doc tuning you out. If you enter talking about MS you risk the doc saying no, just to prove he/she's the doc and your not.
As I wandered down my diagnostic trail I amassed a file full of test results and MRI CD's. I brought a copy with me whenever I went to a new doctor. If they asked about previous testing I gave them the file. If they didn't I kept it in my bag.
The most important thing I had in my file was my symptom diary. It included dates when a symptom first appeared and info on what I was doing, what the weather was etc. Dates when that symptom resolved, if it resolved. Dates when the symptom reappeared.
At the appropriate time I just gave the facts, without interpretation, mine or any doctor I might have seen in conjunction with a given symptom. Let the doc do the work :-)
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