Honestly I’m not sure if this is a good idea, but the day before yesterday someone emailed me through my “Contact Me” page and my reply email isn’t getting through to her email, so I’m posting my reply here. I want her to have this information and I don’t know how else to get it to her if I can’t email her. I would probably give similar advice to anyone who was wondering about MS or if they might have it, so maybe it’ll help someone else out there.
Thanks for reaching out. I can’t even imagine how frustrated you must be.
I’m not a medical professional, but yeah, your symptoms sound familiar. What tends to really define MS, though, is the presence of sclerosis (white plaques or scarring) in your brain, so if nothing is showing up on your MRIs I’d probably assume it’s something else. Only 5% of the population generally ends up with a false negative or a false positive. When was the last time you had an MRI of your brain? You said the neurologist sent you for one of your back? Were you experiencing weird things going on at the time of your MRI, or had the symptoms subsided already?
Was the blurred vision you had accompanied by any loss of colour or pain? Optic neuritis is a really common symptom, and for me, I lost my colour vision in one eye (red went first), as well as becoming light sensitive to the point of nausea. I wore a black eyepatch for a few weeks (I drew a skull and crossbones on it with white-out) because it hurt too much to look out that eye. It felt like an ice-pick piercing the back of my eye. I remember being really surprised when I’d look in the mirror and my eyes weren’t bruised or bleeding, because they really felt like they were.
Have you ever had a visual field test? It’s usually performed by an eye doctor (from what I remember) and basically you look at a big parabolic dish and try to track the lights that are flashing. I don’t really understand what it has to do with diagnosing MS but I know I’ve taken them a few times. I think a normal eye doctor can perform them, if they’re set up for it, but you may have to ask around. It may only be useful as a diagnostic tool when your eyes are in the process of going wonkey. Once it’s gone away there may not be anything to find.
Evoked potential tests are another diagnostic tool, and rather than me trying to explain them, just take a look at this link:
Information on Evoked Potential Testing
A spinal tap is the last diagnostic tool that I know of, but personally I’ve never had to have one. My MS diagnosis was mainly me being in the right place at the right time. My chiropractor sent me to an eye doctor, who sent me to a neuro-ophthalmologist, who sent me to the MS Clinic at UBC in Vancouver, where I was diagnosed pretty quickly since I was in the middle of three active attacks. Apparently the white spots only show up in your brain if you’re currently having an active attack.
I hate vertigo. The spinning “stop the world” feeling that leaves you nauseous. For me it was like having “the spins” from drinking waaaaay too much, but without actually drinking anything. No fun at all.
Have you spoken with your doctor about the list you’ve outlinedin your email ? Is there someone (a doctor or nurse) who’s been following your history? Taken separately, the symptoms you’ve been experiencing may not be an indicator of MS, but something is going on when you look at everything altogether. Yes, stress can do really bizarre things to our systems, including making us feel drunk or tired all the time, but you’d think it would come and go and you’d definitely be able to track it with your mood. And as far as I know paresthesia (that’s the pins and needles) is not usually linked to stress. Have you ever been involved in a major accident or something (like a car accident – something very jarring) that could explain the nerves going crazy? From what I understand “pinched nerves” don’t actually happen very often, so you experiencing it so often just isn’t right. (Sorry – like you don’t know that already, right?)
MS can mimic a host of other problems, so I’d hate for you (and your doctors) to assume it’s one thing when it could be something else. What city are you in? I can try and find an MS outreach or a close chapter of the Canadian or American MS Society for you, and they may have more answers than I can provide, and can maybe hook you up with other medical professionals.
In the meantime, the following site has some very interesting questionnaires. I don’t really love the idea of self-diagnosing, but I feel like you’re worried and maybe these little questions will help narrow things down for you. Just remember to be really truthful and don’t “bend” your answers to fit the questions – that’s where most of the self-diagnosed weirdness comes from. About a third of the way down the page are the “Symptom Assessment Questionnaires” and below that is a section called “Research more about MS,” with a bunch of stuff on diagnosis:
Information on MS Symptoms and Diagnosis
I’m really sorry that you’ve been experiencing all this and not getting any answers. Are you keeping a journal? I would definitely start that. Write down any symptoms, but also keep track of your mood and the food you’re eating (if you have time) – your mood may link some symptoms to stress (or will rule out stress as a factor) and your food … lets just say the more research and experimenting I do, the more it seems that food (proper nutrition or the lack thereof) really does make a difference in my symptoms and definitely in my energy levels. Track your energy levels too. Maybe you’ll notice patterns. Maybe not – but at least you’ll have something concrete to go to your doctors with. It doesn’t have to be really complex, either – just the date, time if you want, check-marks, stars, happy/sad faces, whatever works for you, and symptom lists in point-form. Just do whatever you can with the time you have, and don’t make it something else to stress over!
I hope I can help, and PLEASE get back to me. Let me know what city you’re in so at the very least I can put you in touch with a local MS Society chapter or something.
I wish you all the best,