Odd symptoms need advice - long post!

New diagnosis and before diagnosis
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Hi all,

I’ve been loitering here for sometime, and thought after a few weeks I’d reach out for some advice, help and guidance on my symptoms that have developed over the past 3 months. Firstly I’ve not been dx with MS but I am obviously quite concerned that they appear to mimic MS, especially after chatting to the dreaded DR Google!!!

Late June 2013: Lightheaded for about 3 weeks with a throbbing pulse like sensation in the extremities– visited GP and was told Vertigo, but I didn’t have the spinning, just a spaced out sensation. Was given Dogmatil a anti depressed that works on Vertigo symptoms (It worked, lightheaded symptom gone)

July : Finished course of tablets and slowly developed a tingling in the same extremities (socks and gloves area) hands mostly, that developed into morning ‘numbness’. I use the word loosely has they weren’t totally numb just the slight sensation of slightly asleep with blood rushing into the limb. This persisted for and became an issue for about 2 weeks, with odd bi-lateral tingling, buzzing and tight skin sensations in my fingers, forearms and shins of all places. Visited GP who booked me in for a EMG and to see a Neurologist in September.

Early Aug : Developed the light-headedness again, this time with nausea, I was on holiday at the time, I felt so bad I visited ER. Told the Trauma Doctor my symptoms and strangely he asked had I had a head or neck injury in the last 3 years – I had, I was knocked unconscious from a blow to the back of the head 1 year ago. He suspected a herniated cervical disc or bulging disc. Given Dogmatil again, which again worked on the Vertigo and nausea. Legs and arms still tight, buzzing and tingling though.

Mid Aug : Buzzing and tingling easing slightly in my extremities but now have odd pins stabs all over but only really if I exert myself. Odd muscle twitching too, legs, face and stomach mainly.

Currently: constant light-headedness and occasional nausea, the faintest buzz in my extremities, the tingling is faint too, the odd twitch and tightness in odd places, face & back! Its strange I can have good days and bad, wake with mild symptoms or wake with worse! If I sit for too long my symptoms, especially the tingling and buzzing is bad enough for me to have to move. In bed my symptoms ease to almost nothing (except when I wake of course – that’s the current lottery of will I be bad or good today!)

I dont have any of the following for the record: Balance issues, heat intolerance, walking issues, coordination issues, vision problems and weakness in any of the limbs (even when ‘numbish’), or suffer from fatigue, if anything I cant sleep!

For me the anxiety of the symptoms and the possible causes are distressing, the symptoms are annoying if pushed for an answer but are never painful. I no-doubt have pushed myself towards anxiety over this which isn’t helping… but its the not knowing whats going on with a before healthy, fit body thats driving me crazy… your wisdom is most welcome!

Small update: When to Doc’s yesterday still complaining of light-headedness and nausea, she said she would refer me to A&G to rule out anything sinister in the brain area. Bloodwork checked, all very normal, Neuro test passed, CT Scan clear (I know that CATS arn’t good at picking up MS lesions but it rules out larger nasties).

So here I am!

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Hello and welcome to the forum! It is a really difficult time when you have unexplained symptoms like this but unfortunately the best advise i can give is to be patient until you get your appointment with the neuro. As you will know from reading posts on here…we all experience ms differently but your symptoms do not sound ms-like to me (from my own experience) but i could be wrong. Nausea and light-headedness are not a common symptom of ms but dizziness/vertigo are common. There are other conditions that mimic ms symptoms that can easily be treated so please try not to get ahead of yourself (difficult i know!). A disc problem sounds highly likely from what you have said. When you see the neuro i would hope he might book you in for an MRI scan to rule out any neuro problems. September is not far away but i know its awful playing the waiting game. I really hope you get some answers soon. Best of luck. Teresa. x

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Hi Carilia!

Totally agree with Teresa’s post -and nothing to add - just wanted to say hello x Try not to worry too much (easier said than done I know!) xxjenxxx

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Hi Cerillia

Welcome to the forum…

Sorry to hear of the difficult things you’ve been going through. I can understand it’s very frustrating when your bodies suddenly letting you down and you just want a simple answer.

As Teresa said the symptoms you’ve described of course could fit with MS. However, usually in MS the symptoms don’t tend to be everywhere or move around one day from right foot to L lip to L arm to tummy. This is because MS causes inflammation/ damage to specific areas in the brain or spinal cord. This can be progressive i.e symptoms never get better but you just end up with more things on top or relapsing remitting where you have episodes of inflammation in specific area then a period of recovery which can be complete or partial. That’s not to say yours is definitely not MS but just from what you’ve described doesn’t make me think of MS immediately.

Try not to google or stress too much - I know you’ve probably been told this. But worrying/stress can sometimes make things worse and bring on other symptoms. It’s hard and disturbing but try to put it in the context of is it affecting your everyday function / can you work etc. It’s horrid - I know. I’m still possible MS 2 years on from my original episode of symptoms. But it does become easier - I am much more relaxed about things nowadays that’s not to say I don’t have my frustrated down days too.

Wait till you see the neuro and hopefully he should be able to give you some answers.

Good luck

Reemz

X

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Thanks all for your words of wisdom… I must admit its a very stressful time.

The intermittant nature of my symptoms are the thing that confuses me the most, nonexistant to mild one day, even from morning to evening. From shin to forearm the next. Im hoping the EMG will at the least show something concerning the nerves or muscles.

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Hi Cerilia, I’m in a similar position to you: dizziness, muscle twitches, faint numb or buzzing sensations and am awaiting an appointment with a neurologist. I’m attempting to keep myself calm with positive self talk, resting where I can and keep on doing the things I need to do, which is a bit of a struggle as I don’t feel particularly focussed or motivated but I’m also trying to be gentle with myself and give myself praise when I’ve achieved something. Very like talking to my 4 &3/4 year old! It’s amazing how good you can make yourself feel with a few kind words :slight_smile: Wishing you calm, clarity and answers!

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Thanks Reikiblossom… lets both hope we get some answers soon.

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Symptom update: Well this roller coaster of pains aches and tingles keeps giving me surprises.

Thankfully my ‘Out of it’ lightheadedness is appearing to get better, however thats replaced with morning aches, first on my forearms, then the next morning elbows, and today biceps. It appears to be travelling up the arms. I not sure if this is constant with a pinched nerve (as suspected by one doctor) or part of a more serious condition.

How (position wise) I sleep does seem to have an impact on how i feel the next morning.

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Well ok the saga continues… had my EMG yesterday, and guess what, all clear and perfectly normal. My suspect hernaited disc is off the table, and I suppose MS is back on!

However Lyme disease testing has been mentioned, so thats the next step I suppose. Test on Tuesday.

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All the best. Keep inching towards answers!

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Thanks Reikiblossom,

I’m not confident anything will come of Lymes, but its worth discounting things. I must admit my symptoms appear to be easing somewhat. I even managed to go out for a run yesterday in the hope that all this is anxiety driven, and getting back to normal will help with the symptoms and my recovery.

I think though for me the MRI is the important bit.

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Ok Blood taken and dispatched… 20 days to process apparently.

Symptoms: still seem to be fading however odd days I have a flare up, stiff forearms one day, odd tingling (hands and feet) on some nights. Still occasional lightheadeness. Im still confused as in an effort to get fit again I’ve taken up jogging, which doesn’t seem to present any problems. I use to be very fit, so I suppose Im just brushing off the cobwebs. I find it odd though but surely if it were MS would I feel more debilitated than I do?

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Ok results in on the blood test, a big negative on the Lyme disease…

Neuro next week and hopefully some answers.

Currently my symptoms are the mildest they have been since the flare up, some days nonexistant.

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Glad to hear that your test came back and good luck with the neuro!

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Thanks Reikiblossom…

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Thanks Reikiblossom…

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Ok having my first Neuro appointment tomorrow…

Update on symptoms: My lightheadedness has ease tremendiously (not on any medication) however the pins and needles and vibration in my hands, feet and calves is still annoying present…

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Had my first Neuro appointment, I was very pleased how it went. I presented my list of symptoms ‘written’ along with the chronology. The Neuro read it slowly and then asked a series of questions, on each point. He didn’t seemed rushed or impatient, just concerned. Though some of the questions seemed a bit left-field (do I own pets!?!). He did seem concerned however about the old head injury, and though a previous Doctor dismissed a spinal issue/injury, he didn’t.

I then had a complete Neuro examination, I mean he took 45 mins, everything from balance, strength, coordination to heat/cold sensitivity. All normal.

He then ordered new blood tests, including urine and a head, neck and spinal MRI. I couldn’t be more pleased.

Hopefully I am closer to some answers.

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So the story continues…

My symptoms have changed somewhat, the good news is the tingling, numbness and vibrating have dulled to almost nothing (in some cases gone). However the spaced out sensation is back, and has been back for 2 weeks. My GP is almost certain Im suffering from a form of vertigo, but I’m not so sure. The room never spins with me, I just feel unconnected to the world, and lightheaded…sometimes feeling as though I’ll faint.

One thing that may be a lead is that the sensation always seems to be connected to tension and stiffness in the neck area. Certain head movements do make matters worse. So the past head and neck injury is a possible cause, the neuro did seem very interested in that.

I’m having my Head, Neck and Spine MRI’s tomorrow, along with more blood and urine. Results in on the 5th of November, so wish me luck!

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Good luck for tomorrow!!! Let’s hope for some of those elusive definitive answers!! xxxjenxxx