Confused and frustrated!

New diagnosis and before diagnosis
1

Hi!

New here and really needed some advice on other peoples diagnosis journey!

So i’m 22 years old and first started having symptoms around my 20th birthday, so 2 years now!

my symptoms started with a shooting/stabbing pains in my forearms and shins, these would last for around 5 seconds and come and go sometimes a couple of times in a day or maybe 1 in every other week. (This has since progressed to these shooting/stabbing pains pretty much everywhere and I normally have these a couple of times a day.

I then started to get a numbing sensation, almost as if I’ve had my arms and legs raised in the air for a long time. This sometimes makes sleeping/walking occasionally difficult.

Pins and needles shortly followed which I know have most of the time.

I had a weird bout of eye symptoms which was checked by the hospital and they said was completely fine. They was blurry vision which happened almost over night and started to need glasses, seeing flashes of light and ‘cobweb’ type strings in the corner of my right eye. (These have since gone).

I started noticing my legs and arms would have subtle random movements of twitching. (Still Happens).

I get random intense itching which started initially in just my legs but have since moved to my torso and occasionally my arms, these itches are so intense they make my leg shake and i have to stop everything i’m doing to scratch them.

These were the initial symptoms and then I had started to experience new symptoms (below) which I don’t have all the time.

  • Cold sensation on my neck (felt like a fan placed on my neck) This was a one off.

  • Tingling (like pin pricks) on the side of my mouth.

  • Sharp stabbing pain in my left temple every 2/3 seconds.

  • Unusual armpit pain that almost feels like a scraping under the skin (I have this normally when stressed).

  • Arm drop and weakness in arm to the point I cannot use my arms.

  • Stabbing pain in my neck when swallowing. (One off and super scary)

  • Toes and hand felt like I had glass stuck in them.

  • Noticed I bite my cheek a lot when chewing.

  • New joint pain in knees and elbow.

I’ve seen a neurologist a couple of times who always seems quite dismissive although he did send me for 2 MRI scans one of the brain twice and one of the top of my spine and a lumbar puncture.

I received my first letter about my first brain scan in 2016 to say I had abnormal white matter lesions on my brain and that he has made an appointment for me to see him.

I went to the appointment which we discussed my new symptoms since the last appointment and he decided especially from my armpit pain that he will book me in for another brain scan and a spine scan but with contrast and a lumbar puncture.

The lumbar puncture was fine and the nurse did comment to say my opening and closing pressure was really high and they drained a lot of fluid.

I then had the next MRI on my brain and Spine with contrast in May this year, I received a letter back to say.

"Overall the results are reassuring and there weren’t any changes seen between this and the previous scan in Dec 2016.

When contrast was given none of the areas of abnormality showed any evidence of enhancement.

A further possible small area was seen within the spinal cord which may relate to some of your more recent symptoms.

I will cross-correlate this with the results of your lumbar puncture and discuss this with you further."

Sooooo I thought FINALLY a diagnosis is looking promising at my next appointment in august, but then I’ve received a letter Today to tell me my lumbar puncture came back normal.

I’ve read you can have ms even with a normal LP but it’s around 5% of people that don’t show any signs on the lp so now I feel like I’m not going to get a diagnosis at my next appointment !

I’m just wanting to know how long it took for other peoples diagnosis and have you had a normal LP?

Thanks!

2

Oh yeh, a lot going on indeed!

Some of the symptoms do sound MS like, but not everything. And as you know, different people with the same diagnoses can have differing symptoms.

it isnt long till your next appointment, so hang on and wait to see what the neuro says.

Write things down, incase you forget to ask about them.

Diagnosis time varies tremendously.

Try not to fixate your mind on MS.

I was wrongly diagnosed with PPMS for 10 years!

pollsx

3

Thanks for replying to my long ramble!

Im trying so hard to not focus on it being ms but I’m finding it difficult! But yeah like you said just hang fire till my next appointment :). Wow 10 years!

x

4

xxxx

pollsx

5

As Poll says, it’s possible that it’s MS, but only the neurologist can tell you whether it is or isn’t.

It does sound to me like you are not likely to be getting a diagnosis of MS. There are a good amount of your symptoms that don’t sound like MS, but then everyone is different, so for all I know, all your symptoms could fit MS.

And as you have found out, only 5% of people with MS have a ‘normal’ lumbar puncture, i.e. without oligoclonal bands.

It’s truly a horrible situation to be in, having real nasty symptoms and be waiting for an appointment at which you know you’re likely to come away from with no clear diagnosis.

I do feel for you, there are so many people living in the same Limboland. In a way, life was easier without the Internet. When I was first tested (20 years ago), I had classic MS symptoms, lesions in brain and spine, positive ‘O’ bands on LP and still didn’t get an MS diagnosis, (I don’t think a CIS diagnosis existed either). In those days, there was no internet so I couldn’t look anything up. I just went away and got on with my life until after a series of relapses, 5 years later I had a big one and went back to the neuro at which point I was diagnosed. But as that was in the bad old days with no available drug treatments, it didn’t really matter. And of course, I couldn’t easily look things up the way we do today.

In your position, if you come away with no MS diagnosis, I would assume the neuro will be advising you on what to do next. Are your symptoms improving over time? Or have they stayed the same since the start? Make sure you take with you some details of what symptoms you’ve had, roughly the dates, the length of time each symptom has lasted, any lasting effects, or whether some symptoms have completely disappeared. Try to take someone with you to the appointment. Their job will be to listen carefully to what is said. Because too often, people go into an appointment, get a bit thrown by what is or what isn’t said and come out thinking ‘what the hell just got said!’ And ‘what did s/he say comes next?’

I would expect that either you’ll get an MS diagnosis, or a CIS (clinically isolated syndrome) diagnosis (more or less a wait and see diagnosis), or not either CIS or MS, just a ‘wait and see’ prognosis. Or the neuro will completely rule out MS or CIS and either diagnose something different or order more tests.

Best of luck with it. And try not to worry too much, whatever is the cause of your symptoms, worrying won’t help.

Sue

6

Hi Sue,

Thanks for replying your post has put me at ease a little bit, it’s far too easy to get wrapped up in it all!

I agree there are symptoms that I have that don’t seem to relate to MS which makes me think it isn’t but like you said there are so many different symptoms for different people!

How often was your relapses and how long did they last? As you said you had a big one and went back to the neuro, I don’t ever have this big event of symptoms and then ‘remit’ my symptoms just come and go through the day in short bursts and I never get a full day without them which I feel doesn’t really fit the RRMS category?

The symptoms are getting worse, at the beginning it was just the occasional arm and leg pain but now its just everything, everywhere lol. I do need to remember to keep dating the new symptoms ect!

Thanks for the advice i really appreciate it.

x