Do I definitely NOT have MS? Should I push for a spinal MRI?

Brain and nerves
1

Hi all,

First - thank you for reading this. I would truly, truly appreciate any advice you guys could give me- I really mean it.

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I'm a 31 year old male. And basically- I'm exhausted a lot of the time and I have trouble with walking.

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A few years ago, I started getting headaches (particularly behind one eye) after seeing many neurologists, getting a normal MRI result for my brain (and being given three different rounds of medications) I finally saw a physiotherapist. He told me that I had cervigcogenic-neck problems; and, after a lot of physio, the headaches went away!

But then a year ago, I was doing a lot of sprinting. One day, after a hard sprinting session, I stood up to walk down the hallway- and my legs felt like jelly. I was diagnosed with having spondylolisthesis and a bulging disc. Ever since that day, I've not been able to walk for more than 5 minutes, or stand up for very long.  I've been seeing two physio's who are telling me I have muscle imbalances caused by the back injury.

Just the other day I demanded another MRI of the brain (has been 4 years since the last normal one) and got one. The results came yesterday- NORMAL again!

HOWEVER- they didn't do a cervical spine MRI. Do I need this, or are two normal brain MRI's enough to decide I haven't got MS?

Here are some details:

-I don't really have mental fog, word-recall or memory problems / pain and aches (apart from my bad back). 

-I am able to ride my bike 10 miles a day, (despite not being able to walk a few hundred metres!).

-I can sleep 9 hours at night, and still be exhausted the next day! 

-I'm not even working at the moment because of not being able to walk properly- so not stressed about work or anything.

-I had the usual blood tests done- iron, b12, thyroid etc but they all came back normal.

-I get the feeling of having 'heavy arms' a lot of the time; and light things feel as if they weigh a lot more than they actually do.

-I'm a healthy weight.

-I have some anxiety (which gets worse when I'm tired) and hayfever. At least- I think it's hayfever;  get sinus headaches (and blocked nose) every day for a couple of months each year.

-The doctor tested all my reflexes and strength (all fine).

-I don't have any vision problems.

-I don't have any problems with my bladder or bowels.

 

Um, so that's about it. If anyone could give me their opinion or some advice, I would REALLY appreciate it!

Thank you so much,

Eli.

2

Hello Eli53877,

It may be worth having an MRI of your spine, however if your brain MRI results are normal it is unlikely that you have MS.  If you can have further tests then go ahead; anything that will help to clarify your diagnosis can only be a good thing.

3

Hi

A spinal MRI could be useful. I laboured for 7 years under the misdiagnosis of a prolapsed disc. Weak legs, aching back pain, shooting electric sensations down my legs when I looked downwards. Saw several doctors who all returned the same diagnosis. A few bouts of optic neuritis and a hospitalisation later I was MRI'd. The full scan showed lots of lesions on my spinal cord, relatively little in my brain. Transverse myelitis. Am now diagnosed with MS and on meds. Keep pushing for further investigation if the diagnosis doesn't feel right. They don't get it right first time. Good luck

4

I think you definitely should ask for a full spinal MRI.  This is surely necessary due to your bulging disc and would be useful to see if there are any lesions.  Also I think you should request a lumbar puncture to see if you have oligloclonal banding which would indicate MS.

My brother has disc problems and since the age of 44 has not been able to sit due to the pain, not even to eat a meal.  Yet he can walk and cycle.  In other words I think the bulging disc could cause significant problems for you.

Good luck.

5

i thinkyou should get an  done to be sure but  i am quite sure you dont have MS Hope you get better.

 

6

i dont know i didn't see i mean do MRI.

 

7

hi eli,

while it's probably not MS, unfortunately it still could be. like others, i agree that you would benefit from a spinal MRI, plus a lumbar puncture. there's such a huge number of possible symtoms with MS, and each person with the condition gets their very own version of it.

do please bear in mind, that just because a person has one health problem, doesn't mean they don't have other potential, unconnected problems. i know that it sounds obvious, but medical professionals have a tendency of looking for 'the route of least resistence', offloading all problems on one diagnosis. the example of this, that happened to me (definitely not what i'm suggesting has anything to do with your problem!) is this: i suddenly had a horrific head pain, was rushed into hospital, only to have the medics assume that it was because of my already diagnosed MS, fortunately i lost consciousness before they could discharge me. what was actually happening was that i was having a haemhorragic stroke from a brain aneurism that i hadn't been aware of. 

incidentally, when i was in the process of being diag. with MS, i had brain MRI's that didn't show any lesions, anywhere in my brain and the spinal MRI was inconclusive, it depends what kind of MRI machine you were MRI'd in. i went on to be MRI'd again, in a better machine, had a lumbar puncture and got a definite MS diag. it turned out that the inconclusive cervical MRI, actually has a huge series of lesions. the latter MRI was done through my nearest neuroscience machine. have you seen a neurologist?

i'd recommend trying the MS society's website for info and support.  

best of luck. x

8

Hi Wendy80842,

I have just been reading thorough your reply on here as I feel I am in limbo myself and searching for answers. I have recently had brain MRI which came back clear after I pursued this with a neurologist myself; having suffered from several worrying symptoms (lightheadedness, numbness, fatigue etc etc) over the past 6 weeks or so. The neurologist is convinced I don't have MS, after carrying out reflex tests and the clear brain MRI result, I am not so sure, all my symptoms seem all too familiar to those of MS. The numbness is still hanging around, more like numb patches on my right foot, right hand and arm and up and down my leg and face. These can last on and off for most of the day and always on the right side of my body. Is this a common symptom? Do you think I should know push for spinal MRI? For more answers?

Thanks Natalie

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Thank you so much for your advice. I really, really appreciate it.

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Hi Drew,

I will indeed ask for a spinal MRI. Unfortunately it will be very expensive- but I need it to be done for reassurance. 

I hope you are doing much better now that you have a proper diagnosis! Thank you so much for taking the time to offer advice.

E.

11

Hi Patricia,

Thank you so much for taking the time to offer advice.

I'm sorry to hear of your brother and his back problems- it's crazy how much we can be affected by a single region of our body. I hope he eventually finds some way to return to normal health!

Thanks again,

E.

12

Thank you. I will get it done, just to be sure!

E.

13

Hi Wendy,

First of all, thank you so much for taking the time to provide such an insightful and helpful reply. I really appreciate it.

Secondly- I'm so sorry to hear of your haemhorragic stroke- that must have been so traumatic. But you sound like a positive person, and seem to be coping extremely well. I hope your health is now manageable and you are coping well after your MS diagnosis.

As for the MRI machine used- well, I am in Australia, and our health system is pretty good (as far as technology-standards are concerned). My first MRI was under the supervision of a fairly high-profile neurologist (at one of Australia's best hospitals), so I'm guessing it was of a reasonable quality. 

I will push for the spinal MRI. 

Thank you again!

E.

 

14

hi natalie,

sadly, it's the case that so very many people with MS (PWMS) seem to end up being sent from pillar to post for a long time before eventually getting to diagnosis (dx). my advice to anyone in a similar situation is to not get completely fixed on any particular condition, but: keep a diary of everything, the start of symptoms AND the end (dated), also record any new symptoms that simply continue, any weird sensations, too. it's always handy to take along to any future dr's appointments. when seeing any medical professional, take a list of what you want to discuss. try reading up a little (i recommend the MS society site!). don't overdo the reading though, you'll make yourself paranoid.

for the first 6-8 years after dx, my left side was far more affected by a lot of my symptoms. this has largely levelled out since then. ms is really unpredictable, of course.  

the fact that you've seen a neurologist is good, because you're on the neuro books now. however, it's a bit surprising that you've been told that you don't have MS with only a brain MRI and no spinal one or lumbar puncture or an evoked potential sight test, even. perhaps you could see if you can get some feedback about the dr you saw, from PWMS in your area. he/she might be using old standards to check for MS.

obviously, i can't say whether or not you have MS, other than to say that what you've described could be?! sorry, not much use to you.

if you're in the UK and you can get the money together, (about £175 nowadays, apparently) it might be worth your while seeing a different neurologist privately, as you would get an hour with a consultant, assuming you haven't done this already, then it would be a case of seeking a second opinion, which is possible on the NHS, of course.

by the way, if anyone suggests that vitamin D all but stops MS symptoms, i'd advise using it it only after a blood test and a doctors has suggested it. however, the NHS holds the position that there is NO evidence to suggest that MS is impacted at all by the vitamin.

...and i've waffled again, sorry, i hope you find out what's going on soon.

x

 

15

...and a lumbar puncture (LP) and evoked potential (EP) test. i think it's a little odd that they've simply written off the possibility, without doing the usual. full range of tests.

coincidentally, LP and EP tests would be FAR less expensive than an MRI. this might seem like an odd consideration, but what sort of age is the neuro. you saw? sometimes older doctors get into an 'if it ain't broke, don't fix it' cycle and don't observe new standards/practices, which might explain my query about the lack of tests being done, just a thought.

re: my haemhorragic stroke, i was just very lucky that 2 and 2 were put together correctly, not to mention the fact that that i was in a medically induced coma for 6 weeks and largly missed the whole thing, dumb luck and a cutting edge hospital/surgeon . thanks for mentioning it.

wendy

16

Hi Wendy,

Thanks for the advice. I just feel like I need some answers and soon. I think i will pursue a spinal MRI, the only reason I have left it was because when I saw the neuro previously and explained my symptoms, in particular, the numbness and tingling down my right side; arms, hand, face, leg, he said that wasn't a common symptom of MS! After reading some of the forums it appears that a lot of people do have those symptom at onset of MS. This is what worries me. Today I have woken with my top lip numb, my big toe, along the side of my right foot and my right calf. Surely this is not normal. The numbness keeps moving around different patches on my right hand side of my body. It is driving me insane. It isn't so severe where I can't use my hands or legs it's just so irritating!! If this is a symptom, how long does it last? Sorry for the questions, it just seems you have more information for me at the minute than my doctors... X

17

Hi, I'm just reading your reply on here. I feel

Like I am goin insane at the minute. I have being experiencing lots of different symptoms which appear to be related to MS, before you were diagnosed did you suffer from much numbness? My right hand side of my body has patches of numbness coming and going, this has been happening for about 6 weeks: numb hands, feet, legs, forearms, chin etc, and these move up and down my right hand side throughout the day and seem more persistent at night. Ive had clear brain MRI but no spinal MRI and neuro has dismissed the fact that I have Ms. I am worried these symptoms are one of the main symptoms of the onset of MS and whether I should pursue this any further? What are your thoughts?