I'll be honest and say I'm not sure I have MS at the minute but I've popped onto this group for support just in case. I'm not in the states and the UK system is probably different but I'm currently under a Neurologist for another nerve condition called Idiopathic lumbosacral plexopathy believed to be inflammatory/autoimmune related.
More recently I've developed other symptoms affecting various parts of my body, which has prompted an MRI of my head to hopefully rule out MS. I've had lumbar MRI's looking at my lower back, hips and pelvis and I know what these have entailed but was wondering for a brain scan specifically looking for MS, is it just a straight forward MRI or is a contrast injection necessary to show the problem areas. Just curious that's all.
New symptoms include:
Pins and needles in my right hand
Nocturea (upto 5 times a night)
Constipation
Vertigo
Lack of balance generally
Nausea
Hard to concentrate
Difficulty with cognitive thought
Extreme Fatigue
Altered sensation down my right leg (not plexopathy in this instance)
Can't walk or stand for long
Double vision
Nerve pain and muscle spasms down my right leg. (In addition to what's happening with my left leg with the plexopathy)
I know it could be a lot of things but the Neurologist is at least checking the possibility of MS, although no MS has been evident in my lower back MRI's. I've been on prednisolone to help the plexopathy, which coincidentally helped the other symptoms noted above, sadly I'm now off the steroids and things are declining again.
There isn't a group for lumbosacral plexopathy, so not much help on this site in regard to that condition but neuropathy can develop for all kinds of reasons. Anyway I'm to believe Idiopathic lumbosacral plexopathy is quite rare and affects 1 in a 100,000 people. So that's my interesting fact of the day and a little about what's been going on. I also have small bowel crohn's disease so the whole tangled Web of problems could possibly be autoimmune related. Who really knows but I do my best every day xxx
Thanks for reading and any help with my question about the scan would be appreciated 😊
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Viklou
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Oh Boy, I feel for you. I also just had an MRI of my head. About a month ago. The report is no more white spots than last head MRI about 6 years ago. My symptoms are gradually increasing, numbness in lower legs all the time. Memory is getting worse all the time, that's realy upsetting, because as an example, when I was insurance underwriter, I could recall a 17 diget Registration ID when adding a car to ins policy. now I have to think about it or look up phone #'s, addresses.ThankGoodness for my cellphone, but I don't like putting Family & friend's too much info on the phone. I know I should use a password to open phone, but then I'd forget it thanks to crappy MS memory. But my memories are recalled when I see a reminder on TV, or a smell that triggers a childhood memory.Just do the best you can, go to a respected Neurologist and just get the best care you can.
Are you able to use fingerprint ID on your phone? I use that, and a backup sign thing if I don't get my fingerprint on the screen correctly 😬 my husband knows that one too, so he can unlock my phone if he needs to.
I don't think that contrast is necessary anymore, although some doctors still use it. The problem with MS is that it could affect either your brain or spine, not necessarily both.
When you're walking, do your legs feel heavy or like you're slogging through 10 cm of porridge? When standing too long, do you ever feel somewhat queasy or like you suddenly need to hunch over? Do both of them get better once you sit and rest for a bit?
I need to do the bend over trick too sometimes 😬 it's usually when I'm carrying in brews from the kitchen to the living room. My husband catches sight of me having to bend, and he'll take the cups off me.
Start using it. MS or not MS, you have some definite health issues. Don't be embarrassed; use whatever aids are available to make your life easier. I've also found that strangers are kinder to me when I'm using a cane than when I'm just shuffling along trying to cope without one.
I'm under the NHS too! It does sound like MS to me.
The MRI is done with contrast because they need to see the lesions properly. They would also need to do a lumbar puncture, because if your myelin is getting destroyed things show up in there.
You've definitely got more starting symptoms than me! Mine were just simple partial temporal lobe seizures, happening during my sleep, and my GP didn't believe me when I asked him to refer me to a neurologist. That changed when I had a seizure in front of a triage nurse in A&E as she was doing a pupil reaction as part of her observations. The only reason why I was in A&E was because my mum had ran my symptoms through the NHS Symptom Checker after I had one on my normal wake up time and my brother had come into my bedroom, asking if I wanted a brew. He saw me with my head over my bedroom bin, I told him I had a seizure, and then he went and told our mum. That simple act got the ball rolling for me. The nurse called up the medical assessment unit at the bigger hospital in the next town and got me in an hour or so later. I had 2 further seizures before seeing a doctor, but they got me referred to a neurologist. Thank god this neurologist was an MS specialist, because he got me an evoked potential test (the test with all the wires on your head), an MRI, and then a hospital stay for a lumbar puncture. That got me my CIS diagnosis (the pre-diagnosis so you've got a name for it.) My GPs face when I went to go get some more lamotrigine!!! 🤣🤣🤣😈 he knew he fucked up 😈
A year later, I had vertigo and no feeling on the left side of my face. The feeling returned after my hairline! So the neurologist got me another MRI, which led to me getting my clinically definite diagnosis of RRMS. I was in the first semester of the 2nd year of doing a nursing degree. Got started on copaxone but was too busy to go to the nurses to have them show me what to do, and so I freehand injected myself 🫣 got tried on tysabri 5 years later, but could only do one because the bloods the nurse took before putting it up came back with me being JC virus positive, so back on copaxone I went, with proper training of how to inject for a flew months before I got moved onto ocrevus. I love it! I've not had any change in my lesions when I'm on it 🙌 I'm able to walk again now!
Please listen to everything the doctors and nurses tell you 🙏 the NHS is under a great deal of stress (thank you tories 😒) and you're really lucky to have a neurologist who's on the ball, rather than a neuro that only specialises in dementia/alzheimer's 🤷♀️
You have been through a lot. Luckily, if you can say that, I went to see a Neurologist privately for a consult when the nerve issues I was experiencing were heading the wrong way, via an NHS orthopaedic referral. I knew what I was experiencing was nerve related that's when he arranged the nerve conduction studies on my left leg and the plexopathy was diagnosed the following April. I've had vague symptoms for ages and although the Neurologist I saw last time listened to what I was saying and she agreed for an MRI of my head to potentially rule MS out, rather than a diagnosis of.
Its good that the neurologist is looking at confirming if you do or don't have MS. I got bloods done during the hospital stay when I got my LP, and they were looking at ruling out a much scarier condition (CADASIL). Me and my mum spent a good couple of months waiting for the answer. They only did it to rule out the differential.
CADASIL is caused by something wrong with the NOTCH3 gene, and you'd be really unlucky if you were to have it.
But, if the neurologist wants to confirm something, take her word for it. If you can, ask for something like the radio to be played through the ear defenders, because the MRI machine is really loud 😬
Yes, an MRI with contrast is usually used to diagnose MS. Your symptoms sound like a lot to live with (and familiar) and I'm sorry you're going through this. I hope you don't have MS, but getting a diagnosis can make you feel better sometimes; if you can identify it, you can fight it. Treatments are better than they've ever been, although there's a way to go yet. I hope we can help you anytime you have a question, or just need support or to vent. Best of luck to you! Please keep us posted and let us know how you're doing. 💕
Hi. I didn't have contrast and mine was done in March 2020 UK. The MRI was arranged to check for MS after developing Optic Neuritis. I had lesions on my brain but none on my spine. I think it can be your decision at the end of the day. Good luck with everything x
Hola mi nombre es Nilda M Diaz Rivera y soy paciente de múltiples esclerosis por mas de 42 años y por mala suerte mi hija también la tiene aunque no la quiere aceptar ella sus MRI son hermosos no tiene ni una sola lección en su cerebro pero al realizar la punción lumbar salió positiva así es que te sugiero que le pidas a tu neurólogo que te realice la prueba para descartar el MS y así puedas estar bien segura ya que nuestra amiga es la enfermedad de las mil caras y nos engaña a muchos debes realizarte el estudio y nos dejas saber que Dios te de sanación y mucha fortaleza y cualquiera que fuera la condición no te dejes vencer por nada en el mundo y se siempre positiva.
Hugs to you, my friend, you are going through a lot! I feel you, my recent MS diagnosis was on top of a lot of other problems as well. My brain MRI was with and without contrast, they both look for different things, but as my brain fog is acting up right now, I can't remember the details about that. I know the contrast 'lights up' the lesions, which is what they are looking for if your neuro is looking for/ruling out MS. If you want more up to date info on MS, look up Aaron Boster on Youtube, that is what I was recommended to do, and he is great! He is an MS neurologist, he even has a video explaining the MRI and what contrast does. But, my cervical spine MRI did not have contrast, not sure why though. No lesions were found on that one, but then without the contrast, I'm not surprised. Love your positive attitude and trying to do your best everyday, it's all we can do!! 🧡
You wouldn't have needed to have contrast for your cervical spine MRI because lesions can be seen without contrast - it helps to show if lesions are currently active (and generally that window is only a few weeks' duration). So, that fact that no lesions were found means that no lesions were found, and contrast not being used would have made no difference to the outcome of the scan. I have had at least a dozen MRIs since the one that initially diagnosed my MS more than ten years ago, and only had contrast for one of them - I think that was about scan No 4 or thereabouts.
Contrast use has been much reduced in the last few years at it was found that some residual medium stays in the brain - as long term effects of this are not known, using it as a regular part of CNS MRIs is not recommended now unless there is a sound rationale for doing so.
Don't you just hate having a list of things that are wrong with you? Me, too.
I was diagnosed 10 years ago and so far (knock wood) I have no lesions in/on my spine. So just because they didn't find anything there doesn't mean anything. Good luck.
Contrast is not required to see lesions, but it may more readily show if they are currently active. It is a decision made by the doctors and/or radiologists and may not be decided until you've been through the initial scan sequences - sometimes once those have been given a quick once-over it may be decided to use contrast. If it is used, it does not necessarily mean an MS diagnosis is imminent, it just provides a little more info.
You've said that you've had MRI of your lumbar spine - unless thoracic spine (or lower part of) was included those scans wouldn't show anything MS related because MS is a disease of the central nervous system, and the spinal cord finishes at around L1 in most people.
Having a lumbar puncture done is also not a given, despite what some people are advising. It is used less often these days because of the improvements in MRI technology over recent years. It tends to be used when clinical history, current symptoms, and (in addition to MRI) other tests such as evoked potentials and nerve conduction studies are inconclusive. Note also that with people who have a confirmed diagnosis of MS and who had a lumbar puncture around 10% to 15% of them have a negative LP for oligoclonal bands - this is why it's best to ignore any advice telling you that LP is the "definitive" test for MS - currently there is no such thing and MS is still a diagnosis of elimination of other possible conditions/ diseases.
Note that the article is a re-post of one that was posted quite some time earlier on a previous iteration of Barts' website - which was linked from the MS Society and is thus some years older than the date of its "second posting" so the info on contrast is a little out of date with current practices.
Do you have an answer yet, Viklou? I have been out of pocket most of April. Trying to catch up. Yes, in my remote corner of the states, they seem to LOVE doing a contrast MRI on my brain. Best wishes to you. And welcome!!
Not yet. The MRI was supposed to be this Sunday coming but I've had to cancel and it's now 16th May. It will probably be sometime before I get the results though but hopefully all will be OK. Just been suffering from some vertigo so not been on here much tbh
You have been through a lot!! Most everybody on this site truly has been through all sorts of testing and trials and tribulations. They are a really good group of people who don’t mind sharing their experiences. Good luck on your MRI and let us know how you’re doing.
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