Unsure if its MS

New diagnosis and before diagnosis
1

Hi there,

Firstly sorry about the very long list of symptoms below - thi is what i use for docs appoint hence the length.

Im looking for some advice on whether my issues could be MS or not basically. I have had ongoing issues for over a year now and have been through the mill with regards to doctors - I was sent to tropical disease due to a trip to Asia but only had negative results. I will add a list of issues below in a timeline veiw and would be very grateful for peoples opinions and suggestions for tests. So far I have had a clear Brain MRI (w/o contrast) and lumbar spine mri also clear. Extensive blood work shows no sign of infection. My lastest issues is very bad faicl pain - mostly one sided - it wakes me up and puts me on my knees its that painful. I also have twiching everywhere - legs, arms,chest, face literally everywhere. Deep pains have also become an issue. I am due to see another nuero soon so am really hoping he can help get to the bottom of this. Symptoms are listed below.

December 13

Rushing feeling in thighs – only about 5-10 times in total (pre Asia - post vaccines TD/Hep A/Typhoid)

Stomach cramps for 4 days (Philippines) – intermittent and extremely painful

January

Strange pain/ tension in oblique muscle – intermittent and changing sides

Chills and shivers throughout January

Sore neck – couldn’t get out of bed twice, months apart – ongoing

More frequent bowel movements – ongoing

Blocked sinus (still blocked, right ear-inside) - ongoing

February

Warm sensation in left foot – twitching of left foot (twitching one going)

Dry eyes, Blurred vision/ pain behind eyes – ongoing

Shivers stopped

More frequent bowel movements- ongoing

March

Heat sensation in left foot stopped when other symptoms started – although have had some sensations in left heel until May.

Cramp like feeling in outer side of hands – twitching in legs

Headaches, moving around – some ringing in ears but only 5 or so times

Strange feeling in feet in morning – almost over sensitive

Followed by pain in joints, mainly/more predominant in left side (toe worst)

Mid-march – feeling of numbness in feet and hands, couldn’t sleep with any weight on body (could only sleep on back) this was possible the worst numbness and latest a few nights/days, but took a while to subside.

Pains in forearms, wrists, fingers and deep pain in calve muscles, worst left side

Pains in throat – not inside but rather on the outside

April

Tension in sciatic nerve – felt like a string going from left foot up to groin and down to right foot, lasted a day followed by deep leg pain for approximately one month

Some blurred vision

Light headiness, more often when standing - ongoing

Overly tired on occasion

Pain during sleep – any pressure on arms/ legs results in numbness - ongoing

Headaches – intermittent

Inner ear – blocked ongoing

Fullness feeling in head- this has only started happening more recently, very hard to describe just feels full, almost like a pressure

May

Pains between eyes, intermittent

Vibrations in feet/legs, arm and hands, pulsing ongoing

Scalp pain – burning under skin – intermittent

Occasional pulsating vision on outside of visual field - max 10 times – on sitting down

June

Tinnitus

Nerve pains – leg predominantly

Intermittent ear pain/jaw pains- recent

Temple pains – both sides of head

Smaller vibrations

Twitching eye right eye with slight swelling- approx one week

Tightness in leg muscles

Things that can make it worst:

Alcohol

Tiredness

Stretching

Exercising seems to help for that time I’m actually doing it!

TOOK A GAP IN RECORDING ISSUES AS HAD FALSE POSITIVE DENGUE AND CHIKV TEST RESULTS AND THOUGHT THIS WAS THE ISSUE

Jan 15

Headaches over the xmas period and temple pain

Thumb and little finger twitching – moving inwards toward one another

– other symptoms continued but as its no feb I can not list them all

FEB 15

A spell of feeling very sick for about half an hour followed by rushing from head throughout body

Week later extreme facial pain mainly right side – increase in facial twitching – pain radiated from temple area across forehead, cheek and jaw – almost like tooth ache pain. Pain in corner of eye (skin area) that throbbed and was extremely painful (home from work) – same night woke up from sleep to excruciating eye pain – like someone was stabbing the back of my right eye

Increase in vibration through legs – mostly back of legs

Twitching still increasing

Wrist pain is new as is deep leg pain – wrist pain mainly on right side top of wrist very specific point

Ear still blocked

Feelings of nausea after a night out, dizziness etc

Overly tired and brain fog – seem a bit slower of the mark so to speak

Pressure feelings around legs – almost like something is wrapped around it

Head ache – rear of head – intermittent – lasting about 10 seconds, very painful.

Increased startle response – flinch when touched sometimes

March

Issues continue- extreme bout of facial pain, same side – more painful and longer lasting – slept for 14 hours after episode.

Facial twitching continues

Jerks quite bad for a few days – lying down make it worst

Heat flashes in foot – left one

2

Hi Jez,

I’m really sorry I can’t answer all your symptoms point by point. But it probably wouldn’t help much if I did, as only a specialist neuro can work out whether you do or don’t have MS, and even then sometimes only after a long time and some difficulty.

There are a few that stand out straight away as NOT obviously MS-related. MS is not associated with dry eye, sinus problems, or blocked ear, for example.

The rest might or might not be. MS can present with many and varied symptoms, but importantly, so can a lot of other things!

Nothing at all on brain or spine MRI does make an MS diagnosis less likely, as although no single test or investigation can prove or disprove it, MRI evidence is regarded as highly persuasive. In the early days, it is possible for MS damage not to show on MRI, only to appear later, but every clear MRI you have tends to weigh on the side of it NOT eventually turning out to be MS.

There are more than 100 conditions that can appear similar to MS, or have symptoms in common. Although you’ll already have been tested for some of these (the blood tests) you’re not yet at the point where there’s nothing else it could be.

And even if they had seen damage on MRI, it wouldn’t prove you had MS. For that, they have to establish it’s repeated/ongoing, as some people (nobody knows quite why) have just a single MS-like attack, but nothing else happens. Such cases aren’t MS, because it isn’t multiple. So even where the evidence appears to point towards MS, that person might not always go on to be diagnosed, because it never happens again!

I’m sorry this doesn’t provide answers for you. Nobody can, by reading a list of symptoms.

I’m afraid you have to accept that mysterious multi-symptom things like this can take a very long time to get to the bottom of, but it’s important to get it right, so they won’t diagnose on flimsy evidence. As hard as it is, when you’re desperate for answers, they may want to watch and see what happens.

I hope your path is not too traumatic, and you don’t wait too long for answers. Do bear in mind that many symptoms can be treated, even in the absence of a formal diagnosis, so ask if there’s anything you can be prescribed to help.

Tina

3

Hi Tina,

Thank you for the reply, I understand that some of my issues don’t fit with the overall MS picture and a clear MRI is positive but not definitive. I have been prescribed a number of neurotransmitter drugs, for example gabapentin but as yet have not resorted to using it.

The worst pain so far has been the facial pain which seems to come and go every month or so. I guess your right with regards to the possibility of waiting and seeing…its just rather frustrating since I feel I have wasted almost a year being in the wrong department, although as you point out I would rather a accurate diagnosis based on evidence over a guess at the problem. It seems all my tests are negative which makes it very frustrating since as it stands no one seems to be able to help or have a clue as to what the problem is and my issues have been relentless with no break in the majority of problems. Hopefully my next neuro appointment will be more useful as the last visit resulted in a referral to tropical diseases, and that was over a year ago.

thanks again for the reply,

Best wishes,

Jez

4

Hi Jez, my opinion is pretty much the same as Tina. Only a neuro can give you a diagnosis of MS, & only then by eliminating symptoms over a long period of time. MS is notoriously difficult to diagnose as there are so many other things it could be. You’ll need to be prepared for a wait I’m afraid, hopefully not too long.

Good luck

Rosina x

5

Hi Jez,

I totally agree with the advice given to you by Tina that only a neuro can give the diagnosis of ms.

The only advice i can add is that there are over 100 autoimmune diseases that mimic ms. Only by eliminating each one and looking at your medical history and test results the neuro can finally give the diagnosis of ms.

Robert.

6

Slight correction, if I may.

Over 100 other illnesses and conditions that can look a bit like MS, yes, but only some of them are auto-immune. Could range from simple vitamin deficiencies to viruses, inherited conditions, or even functional disorders (currently a mystery to both neurology and psychiatry, but no evidence the immune system’s at the heart of it).

Tina

7

Thanks Tina for the correction i missed that bit. Robert.