Ms symptoms but mri clear: Wondering if... - My MSAA Community

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Ms symptoms but mri clear

Maura37 profile image
24 Replies

Wondering if anyone can advise

Have intermittent numb foot since April then both feet feeling heavy and numb strange sensations all the time by end of May.June hands started tingling experienced painful electric shock in neck back of head and down arms.Feet and legs burning after any activity .July nerve pain and strange sensations everywhere hands developed severe nerve pain and right one feels weak sweating alot occasionally dizzy.

Sent by Doctor to a Neurologist said it might be Ms .After a long wait had Mri scans done without contrast on my Brain Cervical and thoracic spine. Nerve pain is now all over body burning. Neurologist informs me the scans are all normal told her the pain is unbearable and my right hand is getting weak advised me to take more painkillers even though there not working said she will ask the Dr to do more bloods no rush at all.

Not at all happy can you have MS with normal mri scans ??Scans weren't done with contrast in so much pain and not happy with the weak hand and no answers!

Any advise really appreciated

What tests outrule Ms??What should I be asking for?legs and feet burning like there on fire!!!

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Maura37
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24 Replies
hairbrain4 profile image
hairbrain4

There aren't tests that actually rule out MS but rather ones that show lesions consistent with MS. There is another test you can have - a lumbar puncture. It will also tell if you have any active lesions on your spine. I had 5 when they did mine several years ago. I also had several active lesions on my brain. Active is the key word. The lesions are not always active. The contrast is what will show active lesions. The pics without contrast can show scaring if any, if you are in the first stages of MS you may not have any scaring. If your neuro is telling you to take more pain pills, I would start looking for another neuro. Pills aren't the answer to any problem, they just mask the problem & sometimes make it a little more bearable and worse because you aren't getting the treatment needed.

Maura37 profile image
Maura37 in reply to hairbrain4

Thank you so much that makes good sense I am hoping I will be able to get at least a lumbar puncture /mri with contrast although it could take weeks to be done.

ssdw1958 profile image
ssdw1958 in reply to Maura37

I do hope you don’t have MS but it is a need to know. Good luck to you.

greaterexp profile image
greaterexp

As hairbrain4 mentioned, there are more tests that could be done to rule out MS or other neurological problems.

It may be a good idea to find a different neurologist who will be more thorough in testing.

Let us know how you’re doing and if you get further testing. We don’t want you to have MS, but we do want you to get clear answers and then make a plan to treat whatever it is.

Maura37 profile image
Maura37 in reply to greaterexp

Greater exp thank you I am praying I can get an answer signed off work and not able to do anything with the pain.

Is it possible to have severe burning nerve pain with ms.The pain is very severe in the hands feet and legs.

greaterexp profile image
greaterexp in reply to Maura37

Yes, that type of pain is possible with MS and some other diseases and conditions. Let’s pray you find out for sure what’s going on.

ssdw1958 profile image
ssdw1958

Maybe you should have MRI with contrast and you can also have a spinal tap that is another test I had to confirm I had MS. If your not pleased with your doctor you should find another neurologistI say this because my PC didn’t listen to me you need to find one that will listen to you. And take a copy of all your test you had done. Don’t wait for them to do something you do it for you.

Good luck to you.

Maura37 profile image
Maura37

Thank you ssdw1958 I am so grateful for your reply.I do definitely need a second opinion the pain is getting worse my feet and hands feel like they are on fire.

Am suffering since April in bed most days with the pain.Please God will get answers!!!

ssdw1958 profile image
ssdw1958 in reply to Maura37

I do have to let you know I have the same feeling in the soles of my soles of my feet and the numbness in my hands. For my feet i recline them or I will push them on the floor sometimes that will work. When I take a shower I notice when they are in the water they feel good be very careful when you are walking I know that I am unbalanced because I feel like I am unsure about the placement of my feet. It’s not my hands that are numb it’s my finger tips. Keep on flexing them. I am on Ocrevus and I have had the feeling come back more. I can also snap my right hand more than lay left.

Maura37 profile image
Maura37 in reply to ssdw1958

Thank you so much this is very helpful it is the burning in the hands that is the worst.I am always living in hope that the numb feet will come back but they are like this over 12weeks it is worse when you put shoes on had even thought would I try buy shoes for neuropathy they are best in slipper socks.Thank you ssdw1958 if they could even get the nerve pain under control I would be happy.😊

ssdw1958 profile image
ssdw1958 in reply to Maura37

I totally agree with you what a pain I think if the pain in my feet would go away I would walk more. I had a physical therapist and another person tell me It would be best to keep shoes on but I like being pare in my pare feet but I did something bad the other day I ran over one of my toes while I was sitting in my rollator oh that was not a good thing. I put some ice on it and it is ok now. Well I hope you get some feeling back in your feet.

Good Luck!

ssdw1958

kdali profile image
kdali

Not sure what warrants no contrast to be given on someone when they are looking to diagnose MS. I’d find a second opinion. GL!

Maura37 profile image
Maura37 in reply to kdali

Thanks Kdali when I went to appointment I was supposed to ask for the Mri with contrast. I forgot as so much in my head.But yes I shouldn't have to think to ask that they are the specialists.She is very relaxed and keeps telling me to up the painkillers which for me is not an answer😈Thank you.

kdali profile image
kdali in reply to Maura37

That sounds more strange now, like maybe you’re not in the US? Contrast dye has to be ordered by the doctor who orders the scan. The only thing you need to remember is peeing before you get in the tube!

Maura37 profile image
Maura37 in reply to kdali

Thanks Kdali.I am in Ireland 😊and everything is going slow not as many Ms specialist etc there is a public hospital near me with two Ms specialists and an Ms clinic so am going to a different Dr.tomorrow to ask to be referred there but the problem is it is a very long wait .I went private thinking I would get a quick diagnosis unfortunately that was the Neuro who did one Mri without contrast said it's not Ms and to up the painkillers.

I am praying I will get a referral and that the Dr tomorrow will refer me .Fingers crossed🤔

kdali profile image
kdali in reply to Maura37

That’s makes sense now!! Eh, I can’t say it’s been any faster here for me. I hope you get one too!!

Maura37 profile image
Maura37 in reply to kdali

Thanks Kdali will keep you posted.

goatgal profile image
goatgal

Maura37 If doctors had listened carefully/taken me seriously when I described similar symptoms, I might have been diagnosed before 70. Call MSAA and find a neuro specializing in MS in your area. MRI readings alone may not diagnose MS. When I was finally diagnosed 8 years ago I had MRIs with/without contrast of the brain and entire spinal column, very thorough bloodwork (to rule out several of the tick borne diseases) and a lumbar puncture. This provided the neurologist with a complete picture of what was going on.

I hope you find a MS specialist close to you. It is important to have confidence in your doctors.

Boxerfan profile image
Boxerfan

I had a very similar situation in Jan 2008. It all started with my right pupil dialating big & my left wasn’t. I was the “you got to come & see this!” Freak show of the ER among the staff working that day. I went through cat scan followed by MRI w/& w/o contrast. They did the brain & the neck. Then later went & did spine & lower back. They didn’t find anything, my symptoms subsided except when I took my dog for a walk, I would get what I called sleep socks. My legs would be numb from my knees down through my toes. Fast forward to Sept. 2014. I had a new puppy I had turned out to go to the bathroom & next thing I know, I have two running back to me. I had double vision in my right eye, headaches that were awful, numbness had remained in my feet all this time & would get worse with exercise. After 3 weeks of bouncing around eye doctors, primary care physicians (who was ordering an MRI) but 2 weeks later I still had heard anything. I couldn’t stand it any longer, it felt like my head was going to split in half, and double vision was there every morning & by mid day I could see straight again. I finally told by teenage boys (thank goodness my oldest could drive b/c my husband was out of town) that I needed to go to the ER. 5 hours later, MRI & blood work (& the free snacks in the MRI waiting room being reduced to less than half -I mentioned that my TEENAGE sons (2) had taken me in right?) That’s when I finally got answers. My neurologist I was referred to following that visit looked at my MRI from 2008 & said I didn’t have MS then. I totally disagree & I have since found a new neurologist. I agree with several others that said find a new neurologist. I hope things get better for you. Not knowing is the worst thing. Keep asking, demand if you have to & most of all, find someone who will listen, for me, that was the ER doctor.

Maura37 profile image
Maura37 in reply to Boxerfan

Hi Boxerfan

Thank you so much I am so fed up my regular Dr is not listening at all.I think she thinks I am exaggerating because I don't have visible symptoms.I am in Ireland I don't have health insurance so so far have spent huge amount of money and no answers.I feel like they are leaving me to get worse I definitely know my hand has got weak.The Neuro I saw doesn't specialise in anything and is very young her answer is Neuropathy of unknown cause just being told to take more painkillers.I got so fed up yesterday of the pain I have made an appointment with a different Dr and am going to beg her to refer me to a Neurologist in the public system who has more experience.I am praying this will work.End of April I had numb feet only now I have all over nerve pain sweating dizzy at times and a weak hand.It is so frustrating I am encouraged to keep going by all the support on this forum.Thanks for your reply.😊

ssdw1958 profile image
ssdw1958

Hi Maura37 this is ssdw1958 There is something I forgot to say if you do get a spinal tap please listen to the doctors when they say go home and lay down flat on your back for three days. I did not do this I felt good and said oh I’ll do some laundry no no I got such a bad migraine I could hardly do anything. So if you do have a spinal tap You will pay dearly and not in a good way if you don’t lay down on your back. But it was very helpful to diagnose MS.

Maura37 profile image
Maura37

Thank you ssdw I will go to a new Dr tomorrow and ask for a quick referral to a public Neurologist.

I am praying I will get a spinal tap I think I could be waiting a few weeks I really appreciate your advice.

Maura

Kitsey profile image
Kitsey

Hi Maura37, as others have said, you need a different neurologist. Have you checked ms-society.ie? The site shows Dublin although I’m sure they can guide you regardless of where you are in Ireland. I hope you will get the answers you need. Please keep us posted. Everyone on this site truly cares and understands the frustration MS presents. Best of luck!

Maura37 profile image
Maura37

More advice after going to a new Gp I have been referred to a Neurology clinic in University hospital.New Gp really listened said she feels there's demylineation going on😓 and wasn't happy with painkillers and unknown neuropathy since last posting I still have nerve/ severe burning pain all over weak sensation in right hand two numb feet and now numb feelings in finger tips. I am also sweating alot noticed hands have some colour changes.I was told to keep phoning the neurology clinic to get on a cancellation list.But was informed there is no cancellation list you will be seen in 6-18months(am in Ireland)

Friday I could take no more went to A&E saw the same We Dr I had seen in May when I just had numb feet he was concerned plan is for me to come back tomorrow morning and he will have Neurologist see me.Said Neurologist will prob want to consult with the first private Neuro am worried about that as she has only seen me once when I was alot better and will prob say neuropathy unknown cause.😈I don't look sick and touch wood balance is ok.Burning sensations whole body right hand numb finger tips numb and pain is worse profuse sweating feet feel heavier/dizzy on occasions

WHAT TEST do you guys think I should push for tomorrow ???????

IF HE DOESN'T TAKE ME SERIOUSLY AM BACK ON THE 6/18MONTH WAITING LIST.SIGNED OFF WORK With this so very stressed out.

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