I’m too old to have MS. I’ll be 61 next month. While visiting family in Colorado Springs I developed vertigo. Ended up in an emergency clinic. They diagnosed a blood clot in my left internal jugular vein. Someone noticed a mild tremor in my left hand. The blood clot showered my lungs and inner ear with emboli. The emboli felt like fractured ribs. Then they did an MRI. They said I had white spots on my brain and recommended I go home to Wyoming and find a neurologist. I did so, travelling to Salt Lake City to see the same neurologist my wife had. She confirmed likely MS. But because of being on a blood thinner they can’t to a lumbar puncture. That’s needed to confirm MS. If they find oligoclonal bands that confirms MS. So now I’m on Pradaxa and Propranolol. Noone is telling me how long til I get the lumbar puncture.
As I said, I’m too old to have MS. Must cases are found in their 20’s or 30’s. I don’t have any symptoms. My wife says I’ve been losing words for months. But that’s normal for a person in their 60’s. I had vertigo. But the emboli in my ear could have stopped the flow in the semi-circular canals and led to the vertigo. My only problems now are from the side effects of the medications. I’ve been a distance-runner for over 40 years. The meds slow me down to a walk on the track. I’m doing everything the doctors say. I’ve changed to a Wahl-style diet. I’m not forgetting to take my pills twice daily. But I don’t think I have MS.
Hi all, I have my lumbar puncture booked in for next Monday 2/10/17. I’m not scared of the process more the results. Do you know how long you have to wait for results?
Had an MRI which showed lesions on brain and spinal cord. Was put on 100mgs of steroids!! Which caused a stomach ulcer so ended up in hospital for a week in pain and throwing up. I then had IV steroids for a week. Horrendous side effects including 3 stone gained in weight now looks like I have steroid induced diabetes.
I feel so rough just want to get to the bottom of it.
Has anyone else had similar experience? Luckily I have a fantastic neurologist. He says a diagnosis cannot be given on just the MRI hence lumbar puncture.
Mine was the worse experience ever the nurse settled me in, i told her how nervous I was and she gave me a folder with what previous patients experiences were like they had obviously only put the good ones in. This lady dr appears and introduces her self and then adds " I’m going to be TRYING to do your lip" that was it, I was a wreck the word trying just did it for me.
anyway 6 attempts later the nurse stops her and says enough is enough and calls for the consultant to come down. He arrives looks at the needle she’s using and tells her that’s no good it’s too short, he proceeds to do the lip, straight into my nerve that does my leg oops sorry then I feel a wet sensation on my back oh he’s got the needle in but spilt the fluid but got enough for the test.
they left me lying down for an hour then discharged me. The headache came on about 3 hrs later and I kid you not lasted a whole week it was a throbbing banging type of pain that only went by lying down. So I for one will not be looking forward to another lap procedure…
Hi Ellie, When I was seen by my neurologist and told him all my symptoms which are quite severe and impacting on my daily life, he was quite surprised I was not in a wheelchair by now. I’m currently using 2 walking sticks but can only manage short distances. When he examined me he said all my reflexes were out. I was then told it could be MS, viral infection from when I was younger or chronic Myonopathy. He put me on steroids straight away and ordered an MRI urgently which I had a few weeks ago. This showed lots of white spots (lesions) on my brain and spinal cord. He gave me the option to wait 6 months and repeat MRI to see if there are any changes or have a lumbar puncture for a definitive answer. I could not wait 6 months so have lumbar puncture on Monday. What were your symptoms if you don’t mind me asking? Also what did your MRI show up? X
i dont mind u asking at all but am guessing you will struggle to get your hear around my reply!
i felt numb from just under right breast down to my toes, pins and needles n both hands. altered sensation in various places. i wasnt at all keen on a lp and told them why-they agreed not to do one as the history of symptoms was enough and the mri was highly highly likely of ms.
after saying that he refused to give me any dmds!
so basically i was left to my own devices! fast forward 12 yrs to now-i have regular carers, no sight in left eye and total right side weakness, double incontinence and speech/swallowing issues.
am i bitter and angry? of course i was but the only person the that affects is me (and my family) so i chose to be the bigger person and just got on with life! i once ended up at the same social event as that neuro-he couldnt look me in the eye! for that was enough to make me think-i refuse to let that bar…d control the rest of my life!
now i am told that i am annoyingly positive but i can life with that!
we all have a tale to tell. my experience is unique-just like everyone else’s is!
how we all learn to cope with it is a different matter.
I’ve just seen all the times that you’ve asked how long you might have to wait for the results of your LP.
Unfortunately, this is an unanswerable question as it depends on your hospital, your neurologist and your exact circumstances.
It sounds like if you do have what are called Oligoclonal (or ‘O’) bands in your cerebrospinal fluid, then you are likely to be diagnosed with MS. But if you do not (and 5% of people with MS do not have O bands in their CSF), then it will be a question of waiting 6 months for a repeat MRI.
Other people’s journey to diagnosis is often interesting, but ultimately, MS is such a devil of a disease that we all follow different paths to diagnosis. Many people are left living in limbo for a long time. It’s often a relief for people to be given a definitive diagnosis, just to get off the limbo train.
People are generally advised when having an LP to make sure you lie down flat for at least an hour after the test. Also to drink lots of caffeinated drinks. The best thing apparently is full strength coke (fat coke) with a bendy straw - because you’re lying down. This is to ward off a killer headache.
I didn’t know this 20 years ago when I had an LP. But I was lucky and had no headache. (Btw, my journey was very different to yours, plus it was pre DMD days so diagnosis wasn’t so important then because there was no drugs!)
Best of luck for Monday. Let us know what happens.
I don’t think I’ve ever known exactly what a shitty time you’ve had from diagnosis to now. You truly are inspirational in your positivity. Yes I know that there are times when you don’t exactly feel full of joy, but you do come across as someone who spends her time getting on with life and squeezing as much out of it as you can get.
Hi I had a LP on 07/09/2017 and was told by the doctor that performed it and by the nurse that the results would take 3 weeks. They would then be sent to my neurologist for him to schedule me an appointment to discuss the results. By my estimation my results should be available tomorrow but who knows when I will get them .If I have to wait for another appointment it could easily be another couple of months!!!
That’s good. He/she will have done plenty before, and that is absolutely what you want to hear about the person doing your lumbar puncture. It is one of those things where you really don’t want it to be trainee day.
Mine was fine, by the way, and I hope that yours is too.
Please do bear in mind when reading horror stories about lumbar punctures that people are more likely to take the trouble to describe it in detail if it has been horrible and packed with dramatic incident than if it has been a dull non-event. Same sort of thing as the newspapers being full of bad news because good news, even though there is plenty of it, is so boring!
Trust me mine was as bad an experience as I say and I was ready to get up and walk out half way through it, it was only my wife that kept me there. And the headache wasn’t something I would wish on my worst enemy. Maybe I got unlucky and l hope anyone reading this has better lp than I did
Hi just reading your thread and wanted to share my experience.
I received no pain relief or sedation.
The doctor came in and asked me to go into the fetal position which I did and the continued to prod my spine with her finger until she was satisfied she found the the place and stuck in the needle.
It actually didn’t hurt as much as I thought it would. The only weird part was at first I could feel my bum twitch, so I told her and she said oh and withdrew the needle because she had touched a nerve.
She has to go in again and this time she clipped a vein so it bled, but I can honestly say the pain was really tolerable just s really odd sensation of the needle in my back.
Once it was in we had to wait for the fluid to leak out and then she withdrew it which did not hurt at all.
The only issue I have truly had is headache which is quite severe when I sit up in the morning but if lie flat it goes. By the evening it’s completely subsides.
I am a complete whimp but as I said I had zero pain relief and it was no where near as bad as I had been thinking in my mind.
I was diagnosed with MS in early June. I was JC virus negative so never needed the lumbar puncture. I’ve had three monthly infusions with tysabri. Every morning I have numbness to the lips and upper jaw. It feels like I’ve been to the dentist. Later in the morning the numbness fades but the upper incisors still feel like someone has hit me in the mouth. That sensation lasts much of the day. I’ve had other neurologic signs long term, specifically olfactory hallucinations. I’ve had them for decades and recently realised the tysabri infusions cause the phantom scents to dissipate. And can tell that it’s time for another infusion because the hallucinations recur.
thank you so much for this I have to go for a lumbar puncher because they think I have MS and I was really scared to go for it because of all of the LP I have watched on youtube