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Extreme MS Fear at 16

Dear all,

this is my first post. The last 6 months have been filled with huge concern over MS symptoms. I've written out my experiences over the last 6 months, and I would really appreciate to hear your thoughts on whether I could have this disease. 

My first concern of MS began in September 2018, when I started getting muscle spasms in my ear. I looked it up online and the first thing that came up was muscle spasms being a sign of MS. I didn't think much of it, since this was the only thing happening. But it lasted days. Twitching in foot muscles followed, lasting even weeks.

Around a similar time frame, in September, I noticed I was itchy. Like, all over the place, and for the first time felt a brief tingle in a finger on my left hand. I had remembered seeing things like tingling and itchiness from MS. Hmm. That night, strange tingling started happening in many areas rather constantly, like my head, and hand. It lasted into the next day along with burning as I became increasingly stressed at this being an MS sign. My concern of MS faded slightly but twitching continued. 

In October/November 2018, things intensified as I noticed a throbbing tingling sensation, quite strongly, in my thumb. It would be 1 second of buzzing, then 3 seconds of nothing, then buzzing again. It would be like this for a week in the left thumb. Then, the index finger did the same, then the little finger. During October and November I experienced very odd vibrations too, in the back of my head, like buzzing bees inside the skin, which would happen for a few seconds at a time every now and then, in the same spot, for days. This vibrating has happened under my left ear and under my lip, where it has been happening today. This vibrating in the back of my head has also been happening over this holiday period.During December, more continued symptoms, like waking up with buzzing in my chin for a day. Throbbing buzzing in the left fingers, and a strange, cold, stinging like sensation that has been happening about once a day around the right side of my head. For a week in November, my vision was really off for a good week, I convinced myself it was dry eyes, but now I suspect it's MS. The last 3 months have also seen gradually worsening cognition, mainly short term memory.

And now, the last 2 weeks have seen incredible turn for the worst. Indeed, the Christmas holidays,or any time off school, cause the peak of my anxiety, but I believe that to be unrelated.Constant fatigue despite adequate sleep. A couple episodes of vertigo lasting a few seconds. Just the other day, a wet sensation on my thigh that made it feel off, and the same in the heel of my foot last night, combined with an odd buzzing under my lip right now. The last week over Christmas, a strange head ache, but of a different sort, where there is a strange 2 second pain in the same place of the right side of my head, many times an hour. This is yet to subside. Other sensory changes have been noted. I am incredibly depressed and anxious right now. More than maybe ever before. For a good 5 days over Christmas, I had tingling all over my left hand which didn't stop. I have a blood test on January 11th to begin the diagnostic process. I wonder what the people who told me not to worry will be thinking now?

It's true that I'm a hypochondriac who suffers with anxiety and depression. I am 16. I am on the waiting list for CBT. My parents are fully informed of everything above, as I go on about it a lot. I have been wrong dozens of times about my worries, but never before have so many indicative symptoms been present like they are today. They come and go as well, just like how MS symptoms behave.

 

 

This was written in early January - since then, the following has happened:

Mid January through February 2019 - Identical light tingle sensation, usually for 3 seconds, then stopping, then another 3 seconds, under the big toe. This is the big distinctive pattern - the location of the tingling stays in the same for weeks often, but for a whole day it might not show up, then comes back in the same place. I've counted probably 20 locations now. This same tingling happened just under the left knee for weeks. Brief tinglings have been felt in left fingers (notice it's mostly the left). My memory has been so off - short term. Really bad. 

 

There's more: So, the phone vibrating sensation located itself just under the middle of my nose on 7th February, whilst the tingling sensation, which has been located under the left big toe, continued. On 7th February also, burning has been felt in short bursts in just about every place you can imagine. This continues today. The pattern has been completely now identified now - the buzzing or tingling locates itself in one spot, and it stay there whenever it happens, for weeks. 

February 9th, the same buzzing at the tip of my left thumb, that lasted for 3 weeks and concluded not long ago, has returned. It is buzzing now, as I type, also my right hand just burned.

This is essentially my report on my symptoms, I'm sure I'm missing stuff out, but for context on how much this happening - the left index finger tingles yesterday, and this morning, this time on my right side, my right ankle area keeps momentarily buzzing like a cellphone.

I am seeing a neurologist tomorrow at 5:30PM, finally. But, I'm so nervous that I want to know what you all think.

 

Kindly,

Josh

I have MS

Hello Josh

Honestly? It doesn’t matter a bit what any of us think. You have your appointment with a neurologist tomorrow, and that’s what you need to focus on. 

To me, it doesn’t sound like MS, or not the type of symptoms that I recognise. But, we are all so different, what looks like MS to me doesn’t mean a jot when it comes to the next person. And symptoms that could ‘fit’ MS might also fit another 50 diagnoses.

With regard to your appointment tomorrow, try to write yourself a timeline of what has happened over the last 6 months. Keep it brief so you can run through it with the neurologist, note what symptoms have lasted and what has disappeared. Don’t focus too much on it being MS (or any other diagnosis), it could be a neurological problem that is not MS. 

The neurologist will take a history from you (this is where your timeline fits in), then should do a physical examination. Then will consider whether there is something neurologically ‘off’, and consider what might be causing your symptoms. Thereafter, if they think it’s needed, s/he will refer you for specific tests: MRI, nerve conduction, lumbar puncture, bloods, visual evoked potentials. Any of these (and more) could be needed before the neurologist comes to a conclusion. 

Nots that the neurologist doesn’t start out with a diagnosis and try to fit, or rule out, that diagnosis. It’s a much more fluid process. 

I hope you have someone coming with you to the appointment. What quite often happens to people is what I call ‘neurologistitis’. It’s where you sit in the doctors room absolutely following all that’s said and ‘knowing’ you will remember it all. You then leave the room and instantaneously forget everything that was said. ‘What did X mean?’ ‘What did s/he say happens next?’ What did s/he say about Z?’ The other person should be someone whose opinion you trust (maybe one of your parents?) and their job is to be a spare memory / brain. 

Best of luck for tomorrow, come back and tell us how it went. 

Sue

Hi Josh,

Sorry you've joined the site as think you have MS.

Lots of conditions mimic MS symptoms. To diagnose MS most of us find they discount other things first.

As Sue said, take a short summary of your symptoms to your neurologist tomorrow.

If they think it's neurological ( still may not be MS) they may send you for an MRI scan.

From that they can sometimes work out what is causing all your symptoms.

Do take someone with you, ask questions , take notes, 

Let us know how you get on.

Jen

Thank you all. Really feeling the nervousness now!

Just felt my entire right leg burning very hot for a few seconds. I'm really not sure this is even anxiety anymore. So many MS symptoms! 

This burning sensation that happens briefly a few times a day in different limbs has been going on for 4 weeks now.

Appointment is at 5:30PM today.

 

I'm coompetley freaking out because I'm experiencing another sensory symptom above my top lip on the left side. Feels like water trickling down face, feels awful..

I have MS

Josh

Calm down. There’s nothing you can do in the short term. And nothing you think, do or say is going to change the outcome of your appointment. 

You do have an idea that MS symptoms are coming and going very quickly. For most of us, this doesn’t happen. An MS relapse for example, has to be a new or repeated symptom that lasts at least 24 hours and is more than a month since the last time that exact symptom was felt. Progressive MS doesn’t typically have remission of symptoms, although many people do experience fluctuations of their core symptoms. And any exposure to viruses and infections can make us worse. 

So some of what you are experiencing could be your brain sending you down blind alleys. You have built up so much anxiety about this appointment that your whole body is sending your brain weird messages. 

Do try to relax. What do you normally do to relax? Is there a film or TV show you can get into that’ll make your brain take a break from worrying? Or a game, a book, someone you can talk to? (How about doing some cleaning? That’d both keep you busy and shock your parents!)

Or just lay down, close your eyes and try to relax your muscles, that kind of deliberate relaxing of your toes, then ankles, then lower legs, all the way up to your shoulders, face, eyes and head. See if that helps at all. 

Keeping everything crossed for you this afternoon. Just a few hours to go now. 

Sue

No, sadly, this relapsing pattern has absolutely been occurring. Things kicked off in September and went away until November, which settled, then Christmas came, and then the last 5 days have been settled until now. This same sensation in that area on my face is happening after 3 hours now. And, the return of identical symptoms have occurred after more than a month, such as the finger situation which is detailed in the first post. It's all pointing towards a rather devastating diagnosis for me. well. 45 minutes to go.

Sounds like classic mistake. NEVER rely on dr google. Especially for a  self admitted hypochondriac.  Okay, you will have had the neuro appt by now and the process of being diagnosed is never quick. Probably tests and then more tests.  As has been said, the symptons could be many things and you are quite young.

Have you confided in your parents. At 16 you are their responsibility.

I have MS

Hi Josh,

How did it go?

 

(((Sending you hugs)))

 

I hope your appointment went well,  Roary