Hello Where do I start, back in 2010 I had tingling/numbness through out my body, I had nerve testing done all normal, I had MRI done was told I had a leson (think they call it that) but wasn’t sure if that was normal for me so was sent for a lumber puncture, they failed 4 times trying to get fluid I was so upset and stressed I decided not to have another one done at the time, over a few weeks everything settled down I just had a funny feeling in my hands but was liveable. I then got married,moved house, had 2 children. Whilst I was pregnant with my second I had this tight feeling in my legs and feet and could hardly walk, within 2 days of having her that feeling went. Now 2017 the last 4 weeks I have had this tight feeling again in my legs,feet, tummy. They aren’t numb. I went to the doctor’s today and he printed off the letter from my MRI And in it the neguloist said I don’t really know what’s causing her symptoms but there is a high risk She will get MS. I am feeling mixed emotions really, I never got told this back in 2010. I feel guilty for not getting another lumber puncture done but also confused to if I do have MS or not?!? I don’t have any other symptoms, I feel a little dizzy sometimes but that’s about it. He has referred me back to the neguloist I will wait for the appointment. Just feeling confused ;(
Hey there Kwright. Don’t be feeling guilty.
I hear what you’re saying about the confusion and not knowing until or if you do get a diagnosis soon.
I’m in a similar situation. Long story short I’ve had the ubiquitous pins and needles in my left hand since about 2002. Went to get checked out. Had 2 mri’s - one with a blue ink injected. Then went for physio (treating trapped nerves) had electro-magnetic treatment and even had acupuncture. Nothing really changed but nothing really got worse and i just got used to it.
Anyhoo the years passed and the tingling pins and needles appeared in my feet - mainly in the outer toes and the side of my left foot. So back to the doctors. Another MRI but nothing conclusive again.
Apart from the tingly/numbness i can still run, play football etc. Then the weirdest change in my symptoms - numb bum. Very odd and not as funny as it sounds. 
This was about 18 months ago. Another MRI and this time when discussing the results with the neurologist he asked if anyone had ever discussed any possible diagnosis. I said no. He said that at this stage a diagnosis might not change anything as i was (still am) pretty active in sports but that MS was a possibility. This was also the first time i had seen the MRI results and the detail in the brain scans that had been done and my spinal column. In hindsight I never asked as many questions as I probably should have.
Anyway a few months passed and the sensation in my foot has spread to both feet and now feels like i am constantly wearing compression socks from the knees down. It’s not stopping me running or playing footy - but its an odd sensation that’s constantly there.
Another couple of MRI scans later and anther neurologist and this time I get the feeling that something serious is up. This time the new neurologist was very interested in how i was feeling - took me through the scans - pointed out a shadow on my spinal column - wasn’t sure if it was new or not but thinks that MS is a serious contender for diagnosis.
Here is the kicker - back in 2002 after my first MRI, this neurologist told me that MS was put in the notes as a possibility - honest to god! 15 years ago. Who knew? Not me. Ha-ha. Oh well.
So right now I am scheduled for a lumbar puncture in February and another brain scan before a formal diagnosis is made or ruled out. I meet with my neurologist mid February to discuss results and her opinion hopefully with a diagnosis - I’d like to know what’s up with me.
I guess what that whole rambling was trying to say is that you/me just get on with life cos that’s what folks do :-). You’ve absolutely nothing to feel guilty about and right now the waiting is a bit of a pain cos it leaves us to our own imaginations - or possibly worse - google and you-tube looking for clues and affirmation.
good luck with everything.
Just a few tips if you decide to have an LP.
The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.
It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.
These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.
If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a night’s sleep; this is rare.
http://www.rcoa.ac.uk/docs/hesa.pdf
To be quite honest after your experience I would refuse to have another. An LP tests for oligoclonal bands; this only tells them that something is going on in your body; in fact 5% of definite PWMS do not show bands.
This article was written by a doctor about his road to diagnosis; it will explain a lot to you mult-sclerosis.org
Just a little tip; purchase a copy of your MRI; ABOUT £10; always handy for comparison with any future MRI’s
All the luck in the world.
George
Just a few tips if you decide to have an LP.
The actual procedure is not painful; in fact the only thing you feel is a scratch when the anaesthetic goes in. The actual removal of fluid is just a feeling of pressure if done properly. I must stress if done properly; do not let anyone practice on you insist on someone who is experienced.
It’s after you MAY get something called ‘the headache from hell.’ To cut down the chances of getting this you should lay flat for at least 3 hours do not even get up to go to the loo; use a pan. Drink at least 2 litres of classic Coke, not diet; it’s the caffeine that aids replenishment of your CNS fluid. Being your drinking a lot take one of those bendy straws otherwise the bed will get more Coke than you. If you want a change of drink very strong coffee.
These things will drastically reduce your chances of getting a headache that could last about 8 days. If you have a couple of days off work and rest if you do not get the headache, if you do 10 days off work.
If the headache last more than 10 days you could need a blood patch; especially if there’s a wet patch on the bed in the area of the spine after a night’s sleep; this is rare.
http://www.rcoa.ac.uk/docs/hesa.pdf
To be quite honest after your experience I would refuse to have another. An LP tests for oligoclonal bands; this only tells them that something is going on in your body; in fact 5% of definite PWMS do not show bands.
This article was written by a doctor about his road to diagnosis; it will explain a lot to you mult-sclerosis.org
Just a little tip; purchase a copy of your MRI; ABOUT £10; always handy for comparison with any future MRI’s
All the luck in the world.
George
Thank you for taking the time to reply, I had that headache when I had to have a epidural in labour also had to have the blood patch afterwards so that is now another reason I don’t want another one done. If they do another MRI will they be able to tell from that? Thanks again
Yes an MRI
is the most important test; AN LP is what I said previously and Visual Evoked Potentials tells if there are lesions on your optic nerve.
A diagnosis should adhere to something called the McDonald Criteria. changes have been approved to the revised McDonald criteria for diagnosing MS.
THESE ARE VERY RELEVANT FOR ANYONE IN LIMBO!!!
Basically, there still needs to be dissemination in time and in space, but the number of lesions required to get a diagnosis has been reduced massively and they will now accept evidence of previous attacks (even if this is the patient’s own recollection!).
Here is the official stuff:
Immediate diagnosis of MS if you have had: 2 attacks and there is objective clinical evidence of at least 2 lesions OR objective clinical evidence of 1 lesion with reasonable historical evidence of a prior attack. (MRI, LP, VEPs etc are still not required, as is the previous version, but most neuros will do it anyway I would guess.)
When someone satisfied dissemination in time, but not space, i.e. if you have had at least 2 attacks and there is objective clinical evidence of 1 lesion. Diagnosis of MS when dissemination in space is demonstrated by: more than 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS (periventricular, juxtacortical, infratentorial, or spinal cord) OR a further clinical attack implicating a different CNS site.
When someone satisfied dissemination in space, but not time: i.e. if you have had at least 1 attack and there is objective clinical evidence of at least 2 lesions. Diagnosis of MS when dissemination in time is demonstrated by: Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time; or a new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or a second clinical attack.
When someone satisfied neither dissemination in time nor space, i.e. if you have had 1 attack and there is objective clinical evidence of 1 lesion. Diagnosis of clinically isolated syndrome (CIS). Diagnosis of MS when dissemination in space and time is demonstrated by:
- At least 1 T2 lesion in at least 2 of 4 MS-typical regions of the CNS
(periventricular, juxtacortical, infratentorial, or spinal cord) or a second clinical attacka implicating a different CNS site; AND - Simultaneous presence of asymptomatic gadolinium-enhancing and nonenhancing lesions at any time; or A new T2 and/or gadolinium-enhancing lesion(s) on follow-up MRI, irrespective of its timing with reference to a baseline scan; or a second clinical attack.
Diagnosis of PPMS when there is 1 year of disease progression (retrospectively or prospectively determined) plus 2 of 3 of the following criteria:
- Evidence for dissemination in space in the brain based on at least 1 T2 lesions in the MS-characteristic (periventricular, juxtacortical, or infratentorial) regions.
- Evidence for dissemination in space in the spinal cord based on at least 2 T2 lesions in the cord.
- Positive CSF (isoelectric focusing evidence of oligoclonal bands
and/or elevated IgG index) [i.e. positive LP].
I’ll try and answer questions if anyone has any, but you can google Polmon et al. “Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria”. ANN NEUROL 2011;69:292–302.
The paper is free to download.
THIS IS EXCITING NEWS FOR ANYONE IN LIMBO!!!
This was from Rizzo who is very revered in our circle.
George
Hi
That is incredibly useful. Im just replying so that I can find it again.
Rupert
PS when I meant to click on reply, I accidently clicked on report. Hope I havent inadvertently reported your post!
Hi there Bdb! I am new to this forum. This is the first time I have ever posted a comment on a forum…I have been just browsing around here and there. I am from the States.
Anyway, I have been experiencing MS-like symptoms for the past five years on and off. Recently, (the past couple of months), things have gotten a bit worse. I went to my PCP, who immediately referred me to a neurologist, that started the MS work-up tests. I have had MRIs of the brain, c-spine, and thoracic spine. Brain scan was clear, but lesions were found on c-spine and thoracic spine. This past Friday (the 20th) had the dreadful Lumbar puncture. Had it done in the hospital under guided fluoroscopy so it was not as bad as I had thought. If you are going for the lumbar in February, ask for them to do it under fluoroscopy-less chances of the doc missing the spot they want to retrieve the CSF fluid. Waiting now for those results…
I know this may sound funny as you previously mentioned, but I have to ask: How long did the numbness in your bottom last for? This has been one of my first symptoms, (along with the Lhermitte’s sign, and leg numbness).
At this point, I just want a diagnosis…
Best of luck with your testing.
Hi Kwright,
Sorry to hear you’re having a tough time, the symptoms you have described could be MS’y or could be caused by somehting else, lots of things can affect your immune system and make you feel this way.
It took about 20 years of vague and on and off symptoms for me to get poorly enough, then get a diagnosis. I had no idea what was wrong and initially my symptoms were very on and off. The clincher is when my MS became stronger and my symptoms more pronounced.
Best advise I could give you? Have the lumbar puncture. The MRI is useful if done with and without contrast, as it shows old (healed) lesions and new active lesions. However if you are no demylenating in the brain and it’s elsewhere in your spinal column this can be harder to see. I had lesions and they moved rapidly between scans, however I went for a lmbar puncture which ruled MS as a definite.
The easiest way to explain it is in your spinal fluid, if you have MS and you are demlyenating, there are O bands in the fluid, which are not present in your blood (they should do a blood test at the same time). This is not a precedent for anything else. My LP showed a high reading and confirmed my diagnosis and concreted it shut.
In short my Neuro said without the LP they would work off best guess, if I am medicating, I wanted to know for certain so I pushed on. I have had 5 LP’s in my lifetime, they don’t hurt, you just get some gentle shocks from the nerves, but is wholy worth it to be fair.
Hope you manage to get some answers.
Thanks for replying, I am scared and just want answers. I worry that I have done more damage leaving it this long 
- These are all fantastic answers for u. Hope u are more at ease now.it’s hard and can be very stressful when u are in limbo. Fingers crossed for you can see
Completely understandable, the best approach is have the tests they will rule MS in or out. Permanent damage is usually very mild to start and you need a diagnosis to qualify for DMD’s, which can help to delay progress but never cure the condition.
I understand where you are, it’s a nervous place to be, do good by yourself and push it forward for answers. All of us MS’ers have day to day symptoms, less frequent symptoms and then relspases, our lives are colourful, but we learn to live with our quirks and with the disease… It’s not all doom and gloom.
Best wishes.