Very much in limbo

[swimbikerunsurvive]

New here, not diagnosed. 8 weeks ago I went to my doctor for an unrelenting headache. We found neurological deficits so she sent me to the ER. They did a CT which was clean, but I refused the lumbar puncture.

In May 2013 for about a month I had constant numbness that started in my left lip and spread to the rest of my left side. I was also struggling with balance issues, speech issues, replacing words, and memory loss. I kept planning to go to the doctor but I was working 50 hours a week and never got the chance to. It eventually went away and so I forgot about it until these symptoms started.

I am now having intermittent numbness/tingling/muscle twitches on my left side of my body and right side of my face, and I get this sensation that is almost like a cold electric shock feeling if that makes sense. I am also having speech issues, major brain fog and issues concentrating, memory loss, extreme fatigue, loss of appetite, and visual disturbances. I have had an unwavering headache for these last 8 weeks which is really disturbing my life, that hasn't responded to tylenol, advil, aspirin, prescription naproxen, 6 massage therapy sessions, or prescription migraine medication.

On Monday I am going to see the neurologist. Unfortunately I live in Canada, and the last time I had to have an MRI (for an injury, not related), I waited a year and a half, so I am really struggling with the idea of dealing with this for much longer.

I am wondering if any of you guys have any ideas or guidance? The primary thing my doctor is looking for is MS, but I'm not so convinced it is because I'm only 19. Has anyone had any similar experiences or symptoms?

[aspen]

Whereabouts in Canada are you? I have never waited that long for an mri in ON -- just make sure you call and get put on the cancellation list (or better yet, if your gp is concerned, have them call and put you on the cancellation list).

I've had an mri in as little as 4 days this year, and the longest took about 4 weeks.

Has your gp arranged for all the bloodwork to rule-out ms mimics?

I hope you have clarity for the cause of your symptoms quickly.

[misslux]

Same as aspen's experience here. I've never had to wait very long. One time they called the next day because of a cancellation.

The neurologist should be running a battery of tests to rule other things out like lyme and other neuro related diseases as aspen mentioned. Not sure if a GP can order those or not?

Good luck!

[MizMeesha]

I think the neurologist will likely order an MRI and may bring up the LP option again as well - if the neurological exam indicates issues of interest/concern.

Certainly some of the symptoms you note echo my own, but I'm in no place to suggest the cause for you - that said, as noted, many blood labs will help reveal answers toward cause. There are a lot of things that can mimic MS, diabetes, Lyme and deficient B12 are common - among hundreds of others. So, common advice (we've all heard it, it ain't easy) don't get hooked on one notion and try not to stress.

On that note, going to a neurologist appointment with some preparation is a good idea. Time line the eruption/remission of your symptoms and note any recurring symptoms (speech issues) or symptoms that didn't resolve 100%. You may not get to all your points, so be prepared with your top 3 questions.

Average wait times in most provinces in Canada, for non emergency MRI is between 3 and 6 weeks - even Quebec has a wait time of only about 3 weeks. Feel free to call the imaging department to check up on your booking, and see if there is an after hours list (7pm-7am slots) and/or cancellation list - but in general MRI is pretty quick. To that, you might be surprised how quickly a neurologist can book an MRI.

Keep us posted
M

[swimbikerunsurvive]

Thanks everyone for replying!

I saw the neuro today. He did a neurological exam and I have weakness on my left side, but other than that the neurological exam showed nothing. He's going to schedule me for an MRI now to get a better look at what might be going on.

I live in Atlantic Canada, and I guess you get scheduled here depending on how soon they think you need the MRI, which would make sense that I waited a year and a half for one on my foot (because it wasn't a serious issue.)

He said I will probably have to wait till after the New Year, but he's going to look at other towns outside of the city to see if I can get in sooner!

Thanks again or everyone's help!

[minnie76]

Wishing you all the best, you're absolutely correct in that the foot issue is a non emergency. I'm in Ontario and was told by the hospital that they have a "mandate" and brain MRI's are pretty high priority...like the others I never had to wait too long!

p.s. I've never had an LP but for many that is what clenched the diagnosis...it's your call, but it may give your docs a clearer picture.

I hate needles, I've had 3 epidurals...but would not have an issue having an LP if needed.

Take care!

Minnie76

[Canuck334]

Howdy, fellow maritimer here (New Brunswick), I've been in limbo for almost a year now. I actually have a follow up MRI tomorrow, repeat of the brain and doing the spinal cord as well this time around.

At this point all my neuro examinations have not showed much but last MRI showed a lesion on my corpus callosum, and my LP was positive for O-bands.

Limbo sucks, not knowing what is going on, but certain your not feeling yourself can be frustrating.

I've had to wait no longer than a month for an MRI (here in Moncton).

[aspen]

How did your neuro appointment go? (You may have posted, but I missed it, sorry).

How are you feeling these days?

[swimbikerunsurvive]

Minnie - I'm assuming the case is the same here, so I'm glad to hear that! Were you able to be diagnosed without an LP? I'd get one if it meant answers but I work in a gym and am a student and can't really afford to take a few days off work. And plus, getting a needle stuck in my spine is not high on my bucket list!

Canuck - Nice to see a fellow maritimer! I'm so sorry you've been in limbo so long. If the new MRI shows lesions will you be diagnosed? It's so horrible that you've had all these tests show something and still no solution. I hope you get answers soon!

I'm in NS but my neuro told me if I go to another town in the province I will probably be able to get in sooner. They called yesterday but wouldn't give me my appointment date over the phone? So the letter is coming in the mail.

Aspen - I had left side weakness in the neuro exam but other than that is was normal, and low blood pressure (80/50) but it's always low. I'm getting an MRI and we are going from there!

Thanks again for all of your replies. It means a lot to me