MS how did started, how long to dg?

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MS how did started, how long to dg?

Postby fish29 » Thu Apr 01, 2010 12:02 am

Well i have benn sufferinf for now 6 months from all simptoms and problem like MS, I would like to know how did it started in your case whics simpoms came first and how lond did you have yourt dr. put you on diagnose MS?
Also is lumbar punction necessary if MR of head and spine shows nothing??
Thank you very much, so scared and with no answers .
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Postby mbowersox » Thu Apr 01, 2010 7:18 am

My first known attack about three years ago was weakness / paralysis on the left side of my body although I had suspected something was a bit off for a few years preceding my first attack. The exacerbation did clear up almost entirely after a few weeks, but I am still left w/ some lingering symptoms there. It took roughly six weeks from the start of the attack to diagnosis and start of a treatment plan. My neurologist did insist on a lumbar puncture before prescribing any sort of medication, but YMMV.

There are probably so many questions running through your head right now. Just try to take a deep breath and relax. This forum has many knowledgeable and friendly people that are here in case you need to reach out. Best of luck and please keep us updated!
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Postby Lyon » Thu Apr 01, 2010 7:35 am

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Last edited by Lyon on Mon Nov 21, 2011 5:54 pm, edited 1 time in total.
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Postby msgator » Thu Apr 01, 2010 12:16 pm

I started with tingling in my right arm, which completely went away after about 5 weeks only to return a year later. That time I had an MRI of the brain which came out with no lesions, the neuro said to call her back when the symptoms returned. I then got the "electrical impulse while bending the neck" in addition to the arm tingling, and the third time (another year later) they did an MRI of the brain and C-spine and t-spine and I had some lesions in my spine and then had the diagnosis confimed with a lumbar puncture. But that was 1999 so maybe that is no longer the protocol.

In short, it took three specific relapses and three years for me to get a diagnosis.
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby fish29 » Thu Apr 01, 2010 11:09 pm

can Ms be dx without LP ???? now can I be sure that its not MS if MR IS OK and VEP ?
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Postby L » Fri Apr 02, 2010 8:41 am

I had optic neuritis in 2001, opthamologists couldn't work out what the problem was, this was joined by dragging my left foot slightly and inability to pass water once after a night out with friends (very confusing) and two occasions when my legs just stopped working properly (once on a bicycle on a busy road, quite dangerous.) This all lasted for a year or so when my GP r3eferred me to a neurologist (he suspected that it was MS but he kept it from me, I thought that I had a trapped nerve, a bladder infection and something mysterious but not too sinister up with my eyesight.)

Anyway, by the time that the appointment came up with the consultant I had read an article in The Observer by a journalist newly diagnosed with MS, at which point I realised what was wrong with me. Of course, the consulrant agreed with my self diagnosis but it took a year and a half before other illnesses were ruled out for sure and I got the official diagnosis.

It's impossible not to feel scared but the feeling will pass..
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Postby fish29 » Sat Apr 03, 2010 1:11 am

did anybody from the start first simpoms have truuble and heavy walking and truble and weak arms all four limbs? and tingling and numbnesss but not for lond time few minutes??

Does MS hurt ??? once was a report when they said that its disease that doesnt hurt '??
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Re: MS how did started, how long to dg?

Postby NHE » Sat Apr 03, 2010 3:00 am

fish29 wrote:Does MS hurt ??? once was a report when they said that its disease that doesnt hurt '??


Yes, MS can cause pain. I've had neuropathic pain in my right foot everyday for the last 10 years. It tends to vary in intensity (even throughout the day). Sometimes it doesn't bother me, sometimes I can ignore it, oftentimes it feels like my foot is tightly wrapped in hot sandpaper, most nights of the week it makes it difficult to fall asleep. If a doctor ever tells you that MS doesn't cause pain, find a new doctor.

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Postby fish29 » Mon Apr 05, 2010 2:17 am

maybe someone knows the answer if i have done a lumbar punction before 5 years ( i havent had simptoms like now) and it was fine does this mean it has no MS now also?
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Postby suze » Tue Apr 06, 2010 12:05 am

There are many and varied symptoms that cause people to get an MS diagnosis. There isn't a test for MS so diagnosis is usually made after observing an accumulation of symptoms and having a range of tests over time. Some people are diagnosed at a young age, while others are older. Some people have a sudden onset of symptoms, some a gradual onset, and with some symptoms can come and go over a very long time. There are different types of MS and within those types there are huge differences in symptoms and severity of symptoms.
Receiving an MS diagnosis is really scary. Everyone is different and handles it in their own way. I'm certain that all the pwms on this forum can strongly relate to how you are feeling.
The future is uncertain. I usually tell myself that the future is also uncertain for people without an MS diagnosis - they just don't know!!!!!!!!!!
Just at present there are a lot of developments, so it is probably better to be diagnosed now than years ago. CCSVI, lingo inhibitors, and stem cells are all promising.
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Postby LadyDoe » Tue Apr 06, 2010 3:36 am

Lumbar puncture is not necessary to diagnose MS. I know a lady who has been diagnosed with MS but had a negative lumber puncture :S scary. I personally declined that specific test, but still diagnosed with MS.
Also, i am unsure as to whether lumbar punct. results are able to change from 5 yrs ago. It's all based on the individuals body and level of degeneration I guess.
... if it's going to be, it's up to me ... :)
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Re: MS how did started, how long to dg?

Postby zoefromsussex » Mon Nov 28, 2011 11:45 pm

My neurologist told me the lumbar puncture is to detect whether any oligiclonal bands are present in the spinal fluid as that's a sign of a problem with the immune system (obviously the doctor would describe it in a more sophisticated way!) So, I was told that a positive lumbar combined with the mri and/or clinical picture is how they diagnose MS. In my own case, I went to the doc with what turned out to be optic neuritis and numbness/tingling in my right side. To cut a long story short, I had the mri and lumbar done on 20th Oct and both were abnormal and I've since had further symptoms so I'm waiting for a neuro appointment now.
If you do have a lumbar, make sure you lay flat afterwards and drink loads of water. I rushed home after mine as didn't want to leave my kids for too long and I was knocked out for about a week afterwards.
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Re: MS how did started, how long to dg?

Postby Azaeleaprawn » Tue Nov 29, 2011 1:24 pm

My first MS symptoms happened over 25 years ago. It was a week of slurred speech, fatigue, brain fog and a sort of bit foggy vision at times.
Throughout the years I had fatigue, bits of slurred speech, forgetting words, vertigo, back pain, sciatica and countless other symptoms that I mentioned to my GP and then eventually ignored when nothing much was done about them.
Ten years ago I was in a car accident that seemed to really start symptoms going, then hurt my back to the point that my pain couldn't be ignored.
When I asked my GP over 3 years ago if I had MS, she said no. Eventually she sent me to a neurologist because she just couldn't ignore things any longer. That was 2 1/2 years ago. Since then I've had 3 MRI's and the one that got the diagnosis was the brain scan. I've not had any other other diagnostic procedures as the brain MRI seemed to tell them all they needed. Did go to see a neuro at the local MS clinis who after examining me & an interview confirmed that what I had was SPMS. So no lumbar puncture, no evoked potentials, just a lot of MRI's. In fact, if he had suggested a lumbar puncture I was ready to decline it as totally unnecessary.
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Re: MS how did started, how long to dg?

Postby zoefromsussex » Tue Nov 29, 2011 3:46 pm

I didn't even think to decline the lumbar puncture to be honest! I saw an emergency neurologist as my doc wanted to admit me for steroids (I rerfused coz I didn't want to leave my kids and am b/feeding my youngest) and he said I 'had' to have an mri plus lumbar...I wish it had ocurred to me to refuse the lumbar!
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Re: MS how did started, how long to dg?

Postby Music » Tue Nov 29, 2011 4:14 pm

It took a year for my dx back in 1996 - 3 or 4 MRIs and no lumbar puncture.

Take care.
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