May I ask: How many of you are UNdiagnosed? And for how long??

New diagnosis and before diagnosis
1

Looking back I have had symptoms since 2002. Well, my first anyway. Then NOTHING until Feb 2011. I had my thyroid removed in Aug 2010 ( I’ve read the post in regards to thyroid disease and MS and def believe there is a link. As well as I believe a traumatic event and/ or surgery can " wake up" MS also) and like clockwork, my symptoms started only months later. Probably a bit sooner had I paid attention. From Feb 2011 to March 2011 I suffered the following:

Weakness/ warmth in legs, burning on back of neck, burning/ sore scalp, stiff hands, feeling like I was walking on marbles, severe left EYE PAIN, couldn’t handle anything bright, couldn’t hold eyes open even…would try and watch TV with hand on forhead HOLDING up my eyes ( if you can picture THAT one) slurred speech and losing train of thought, squeezing sensations on odd places like my pinky or waist etc… VERTIGO!! I had this PULLING sensation whenever I laid down in my jaw. If I laid on the left…my jaw would pull TIGHT to the left, same if I turned to right, back etc…

APRIL, MAY and June NOTHING…I mean, nothing =]

July 1st, like clockwork all over again =( This time I experienced the HUG! Stopped me dead in my tracks and had me doing my labored breathing ( think child birth) and laying down. I don’t think I got to 30 and it was gone! This time around I also experienced many SEVERE muscle spasms ( especially in legs) and LOTS and LOTS of twitching!! The twitches are all over my body, picture froggies trying to jump from under my skin…this happens in the palms of my hands, legs, feet, everywhere! I had maybe 2 episodes of double vision. I don’t want to bore you with more symptoms, there ARE more.

Most had subsided until about 2 weeks ago =\

I have seen 3 Neuros and been through 3 PCP’s All with different opinions =(

NO ONE to date has even looked at my spinal cord ( Thoracic)

I had EMG, normal. Deep Tendon Reflex’s went from normal to absent in a months time, MRI of brain 2 years ago was without contrast only. MRI of CSPINE with AND without contrast ( 2 done a year apart) conflicting reports, one doc says Syrinx, One says lesion, one says " prominent central canal"

I have been told I have: Peripheral Neuropathy ( one neuro says yes, one says no), Carpal Tunnel, Bone spurs in my neck, degenerative disc disease in lumbar spine. I also have standing lab order for thyroid levels every 6 weeks and it IS normal =)

2

Sorry so long, I’d love to hear other stories & how many are NOT yet dx’d or if you are, what did it for you??

THANK YOU!!!

3

Not dx yet and been in limbo since September 2011…right sided problems, migraine sufferer, facial numbness and got the hug from hell ( I think)…crushing ache in between ribs in mid back. Reduced sensory in right leg, arm and face. MRI last yr showed couple lesions that were reported as ‘inconsequencial’ but they were looking for iscaemia on the MRI…Lessing this neuro for last six. Months and he ordered second MRI…awaiting report…lol Regards Kate xxx

4

i was dx in 2008. the process took 12 months - i was lucky.

peripheral neuropathy is a term that medics use for “i dont know” but if you need to apply for a blue badge you could use that term, probably a letter from a doctor would be needed. somehow a label is often needed for anything official.

i’ve got to say that my symptoms got a lot worse early on but now they have calmed down and are quite manageable.

good luck. try not to get downhearted.

after all even if it IS ms, it’s not the end of the world, honest!

carole x

5

I have been backwards & forwards to my GP since June 2012. Burning & pins & needles in both feet to begin with. Shooting pains up my legs & numbness in two toes. Bad headaches soon follwed & some eye pain.More recently pins and needles in mt right arm & fingers.

My initial bloods were all normal.

I was initially sent to an ortho surgeon who said I had elongated metatarsals in my right foot & thta this was the problem. This didnt make sense to me as it was in both feet & had other symptoms too.

My GP has diagnosed suspected peripheral neuropathy at the moment.

I have had a nerve conduction test but not had the results as yet.

I see a neuro for the first time on 13th November.

I am extremely worried…not knowing is just awful.

6

Hi. I have been undiagnosed since Feb 2012. I woke one morning with tingly hands and it went to my legs, numb stomach and what I now believe to be the hug. All symptoms have now gone except the tingling in my hands which although has got slightly better are no where near back to ‘normal’.

My Neuro has been fantatsic and I have had 3 lots of MRIs all over my brain, spine, etc. They have found 3 lesions and have referred me to MS specialist so am awaiting my date.

What has really interested me is the mention in your post to a link to ‘traumatic event’. I haven’t yet been brave enough to read lots into MS but I am 33 years old and have looked back in my life and can not find any other symptoms I could put down to MS. In Sept 2010 I gave birth to my second child and had a really traumatic birth and believe I had post traumatic stress/post natal depression.

Is there any more info out there on this link that I could maybe read up on?

Thanx

7

hi not yet dx’d but had symptoms on/off for years starting with floating odd feelings where by my legs don’t seem to be attached to me even tho I can feel them if I touch them "/ loss of periferral vision in my right eye which turned out to be due to double optic neuritis :frowning: left my vision damaged unfortunately pins n needles in my hands and legs n feet Neurologist 5yrs ago said this was down to Carpal Tunnel in my hands so I had them both “released” and now the same has returned think I’ve been having “hugs” on/off for yrs as suffered with what I’ve been thinking was chronic indegestion with severe back pains thro the shoulder blades n under the ribs :frowning: balance problems atm Vertigo!!! dizziness n generally feeling drunk even tho not been drinking and not to mention the constant feeling of being hungover n tired thankfully I work term time so I’m making the most of my week off for half term n resting lots GP has made an urgent re-referral back to neuro but still waiting for that to come thro meanwhile suffering what I think is another bout of neuritis :frowning: Lou xx

8

Google

Multiple Sclerosis related to Trauma and you will see SO much info on why I feel MY thyroidectomy " woke up" this MonSter!!

Thanks all who responded =)

9

hi- I’ve had symptoms since 2009, had a few mris and a lp, with no dx. Saw neruo recently who suspects ms, but its so hard to get definate dx. Waiting now for more tests.

Seems like forever to get answers doesn;t it?

10

My symptoms started in feb 2007… all MRI’s, LP’s bloods, etc etc all normal.

I’m still under the neuro, as I have very spastic paraparesis, brisk reflexes and the babinski reflex, my neuro has told me he knows something is going on, he thinks more than one condition, but can’t pin point anything! So still in limbo…

11

Hi, you may have seen my post about finally getting a diagnosis of idiopathic spastic paraparesis, last week.

For years it was thought I probably had PPMS.

My problems are all below the waist (except for a deaf right ear) and include bladder/bowel problems, spasticity in legs, spasms in feet and legs and no mobility.

The deciding factor on Friday, was a normal result on an LP.

MRIs (4) showed no real evidence of MS.

luv Pollx

12

had ms for more than 20yrs… refused mri’s until 2 months ago… it took a further 2 mths to tell me…

have good luck with this

coed