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Arriving at MS

Over the past years I’ve largely lived life as normal. I go to the park with my dog, go to work, read a good book on the couch. If, every now and then, something a little odd happened, say my fingers went numb or i walked into a couple walls, I’d brush it off as paranoia or hypochondria. After all it must happen to everyone right?

It wasn’t until i started talking to some friends that I realised your hand going numb, or dropping the thing you were holding perfectly fine 2 seconds ago wasn’t really a usual occurrence. When I started explaining about the weakness and inabilty to function in the heat for any length of time with my legs feeling like they would collapse and what has rapidly become near constant dizziness and vertigo the past couple of weeks, they became genuinely alarmed. Most of them have seen me collapse in the past from dizziness and weakness but thought i was merely out of shape, now they are urging to me to see a neurologist (which i have an appointment with in a week). Now im beginning to wonder if, as I’ve suspected for some time; something deeper may be the cause. Does this sound familiar to anyone else?

Migraines •2011

General Fatigue (worse with heat) • 2012

Numbness/Dullness left hand • 2014

Pinkie Twitching/bouncing • 2014

Bladder issues • 2014

Weakness legs/ stumbling/ tripping/ right foot numbness (gets worse in heat) • 2015

Dizziness/ vertigo • 2016

Arm Weakness/ tiring quickly • 2016

Eye pain with eye movement • 2017

Intermittent blurred vision/ sensitivity to light • 2017

Shaking/ buzzing in hands/ legs • 2018

Loss of fine motor skills/ weakness in hands (worse with heat) • 2018

Here’s a timeline i put together of when i started noticing these things.

Thank you for reading,

Kenna

Hi - yes some of these symptoms definitely do sound familiar - really good that you have an appointment next week with a neurologist. My understanding is that only a Neurologist can diagnose MS and there are a number of criteria that they look for in order to make the diagnosis, this can take some time. Also, everybody experiences MS differently and there are different types of MS - there is a lot of info on this site and more widely on the Internet. Good luck, I hope your journey is a smooth one, whatever the outcome.

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Hello Kenna

The problem with MS is that there are a huge number of symptoms, many of which are shared with other diagnoses. So don’t get too hung up on it being MS. At least you have your neurologists appointment next week. That’s worth a thousand amateur views on whether the symptoms reflect our own MS. (Just let me say, some of your symptoms are familiar to me, some not. This is pretty irrelevant as someone could have virtually identical symptoms to me and not have MS.)

What is likely to happen at the appointment is that s/he will initially go through your history. It’s brilliant that you’ve done a timeline of what’s happened and when. You could include how long the symptoms have lasted, whether they’ve completely cleared up or if anything is still lurking.

Then the neurologist should do a physical examination, this will be where they test your reflexes, watch what your eyes do on certain tasks, see you walking, or maybe standing (or hopping) on one leg (amongst many other tests).

At that point, the neurologist is likely to have an idea as to what ‘could’ be the cause, but don’t expect them to diagnose you there and then. They’ll likely send you for a test or two, maybe including an MRI, a nerve conduction test, visual evoked potentials, possibly a lumbar puncture, and probably some blood tests too.

Only after this will the neurologist give you a diagnosis, or tell you there’s nothing to worry about, or just possibly, tell you there’s no formal diagnosis right now, but give you an appointment for 6 or 12 months to see if there’s been any changes.

Best of luck for next week.

Sue

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I think we often just try to brush things off and carry on as normal and sometimes the abnormal feelings we experience become the normal.

My limited understanding is that MS symptoms vary greatly between each person and also are shared with many other causes.

The good news is that you’re seeing a neurologist next week which is the best starting point. It’s an opportunity to talk through your symptoms and the timeline you’ve put together. It might be helpful if you can provide detail how long the symptoms last e.g (are they all still an issue now, when you do have symptoms do they last for a particular length of time or do they come and go / is there any patterns etc). It might be difficult remembering all the details, I usually struggle to remember what I had for tea the night before, let alone much further back than that!). It’s also worth mentioning details of any medication you take too as they can play an important role in causing symptoms.

Its likely that the neurologist will complete an assessment on you such as testing reflexes etc. and then from their findings and listening to your symptoms, they will decide what next actions to take. They won’t be able to give you any answers at your appointment, at best they might share some thoughts but usually not. It’s best to be prepared that meeting the neurologist can be the beginning of a long journey of testing and waiting. As there is no diffinative test for MS, it’s generally a testing process to rule out other possible conditions and to see if your clinical findings meet the MS diagnostic criteria (the McDonald criteria).

For now, I’d suggest just waiting for your appointment with your neurologist. If you are curious to find further information, stick to the content of reliable sources such as on the MS society website. I think it’s best to enter the appointment with only the information of your own symptoms and experiences so far. The internet does have so much information, but some is unreliable, others will scare you silly and none of it will give you the answers to the symptoms you’re experiencing.

Wishing you all the very best for your appointment next week.

Take care,

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Thank you to all that replied and for the information and well wishes. I will definitely take the suggestions to add in how long the symptoms seem to last and I’ve started writing a sort of journal about my daily experiences as well. Im nervous but i hope everything turns out alright and that i end up with some answers at the end end of this journey.

Thank you

Kenna

Update: I had my neurologist appointment and have tests ordered. Thus far he’s testing for lupus, RA, hypo and hyper thyrodism, B12 deficiency, Epstein-Barr and i have an MRI to check for MS as well. Im sure im leaving a few out but im very grateful to have a doctor that listened to what I said and hopefully will figure out what’s going on. It’s getting hotter out so this whole situation is getting worse and ive started having double vision as well. Fingers crossed that this is the end of the doctor line!

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