Possbile MS: Hi, My partner is currently... - My MSAA Community

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Possbile MS

Daveo1410
Daveo1410

Hi,

My partner is currently undergoing examinations for a larger nerve issue. We are waiting on the MRI which should be an urgent one this week. I know a potential outcome could be MS just wondering how it started for other people. She woke last Monday with no feeling in top half of legs and arms (knee up/elbow to Shoulder) and around neck and face area. Yesterday had pins and needles in left hand and today that area is numb other areas like stomach and chest seem to have a lack of feel. Also cant feel the sensation when going to toilet etc. Feels fine no weakness or pain at all just numbness all over pretty much and pins and needles when sat in a position to long. She did have a brain MRI early last year for migraines which was normal. Wondering if it started like this for other people with areas gradually more numb or was more centered around a single area?

Thank you

80 Replies

Hi. My experience with MS started with transverse myelitis. I started with unbearable pain in my back and within three hours was paralyzed from the waist down. After a spinal tap and MRIs which showed lesions, I was diagnosed with MS. I am now able to walk with a cane/walker, but have a lot of nerve damage from waist down.

I hope they find the cause for your partners nerve issue.

Everyone has different symptoms and diagnosis. Please keep me updated.

Jesmcd2
Jesmcd2CommunityAmbassador

Hi Daveo1410 welcome! Mine started with my leg doing a dance all its own. I had no control of it. Lasted the summer before, I did anything. MS is so different for everyone, and mimics so many other things.

It shows how much you care asking for her!

Is she seeing an MS Neurologist? And with that much numbness, she should see a Dr right away.

But I'm not a Dr, no one here is!☺️

🤗💕🌠

Daveo1410
Daveo1410 in reply to Jesmcd2

Hi Jesmcd, at first they though it may be Guillian Barre Syndome but after seeing a Neurologist Friday they don’t think it’s that now. Bloods all normal and reactions etc all fine just the growing numbness. We’re in UK so things can take time here painfully. Still at the hospital may be having the MRI today if they have space. She saw a Neurologist Friday and normal doctor today until they have an MRI they don’t really have a clue I don’t think. Just wondered as her onset is serve numbeness everywhere I only ever read or heard MS starts in areas then can progress or starts with weakness and fatigue. I think I am more worried than she is 😅

Jesmcd2
Jesmcd2CommunityAmbassador in reply to Daveo1410

We have a few ppl here from the UK, and they say the same. ☺️ Sounds like she is in great hands, yours and the drs! MS can start with that, it can start with anything it seems sometimes. Or nothing! It's just there. That's why it's so different for everyone!

But IF she does and that's just if, she does have MS, there are DMTs disease modifying therapies that she can take! And most important, it's not the end of the world!🤗💕🌠

Daveo1410
Daveo1410 in reply to Jesmcd2

Thankfully she is having it as we speak so should know the results within 5 days. I’m clinging to the MRI for migraines she had last year on her brain being normal as offering some hope it isn’t to bad. But either way like you say there is always hope ☺️☺️

I would suggest a spinal tap as well as whole spine mri. When u first hear u have ms u think its the end of the world but really it makes u more grateful in ways you wud never known possible. No matter what please let us know how she is doing. 🤗🤗💜💜

She is back to see the Neurologist on the 6th of April and I’m sure that and the nerve test will be next. Hopefully some comfort after the 2 clear MRI and examinations but just want to know what’s causing it. Will do thank you 😊😊

cljones
cljones in reply to Daveo1410

I have a friend that had severe migraines. she found out they were caused from MS. Mine started with drop foot on the left and fatigue. I couldn't hardly lift my legs. They didn't find my lesions in my brain but found them on my brain stem and spine.

Daveo1410
Daveo1410 in reply to cljones

It seems a lot of people start by having weakness more so than other symptoms. Thank you. Thankfully the MRI of stem and spin was completely clear ☺️

cljones
cljones in reply to Daveo1410

I hope so but it was nice to get a diagnosis and not have to keep wondering and keep testing. At least there are DMT's that can help.

Welcome, Daveo1410 . I'm sorry about all you and your partner are going through. We all understand the anxiety of waiting for a diagnosis.

MS is such a strange disease in that it is so different for each individual. There are several other conditions which are similar, so it can take a while to get a definite diagnosis.

While you wait, please know that we are here for both of you, so come and ask questions or vent. We hope you get answers very quickly.

Daveo1410
Daveo1410 in reply to greaterexp

Thank you 😊

Mine started with dropping things out of my hand, then went into the "MS hug" along with Lhermitte's sign which at the time I thought was the result of clumsiness and an injury to my neck from years before.

mstrust.org.uk/a-z/lhermitt...

webmd.com/multiple-sclerosi...

Her strength and reactions were fine again on the test today but sadly expecting that worse. Should know in 5 days :) thank you

Thankfully we got the MRI results today at the hospital and everything was normal 😊. Doctors now stumped what’s causing it 🤔

jimeka
jimeka in reply to Daveo1410

Hi Dave and welcome, I am sorry that we meet under such circumstances but you have come to the right place for compassion, understanding, information. Everyone’s ms is different, fatigue, migraines, numbness, pain, the list is endless. It was good news for your partner with the MRI, I hope that they come to a diagnosis soon. I live in the U.K., so if I can help in anyway, just ask, blessings Jimeka

Daveo1410
Daveo1410 in reply to jimeka

Thanks Jimeka. Yeah big relief the MRI was normal so rules our MS and possibly anything majorly sinister but makes the symptoms more confusing. We have to wait for the Neurologist to make contact to discuss the next steps forward with tests. Oddly even with symptoms she feels fine.

jimeka
jimeka in reply to Daveo1410

She is blessed to have someone like you to care for her. Please will you stay in touch to let us know how your partner is. Please just sit back, relax and smile at each other, don’t let it get too overwhelming. 😊

Daveo1410
Daveo1410 in reply to jimeka

Will do thank you ☺️

Hi, Dave...Sending prayers for answers. Stay strong..🙏💖

Thank you :)

Dave, Good Luck to you and your partner, sounds like you are taking all the right steps to find out whats going on with her, Hope the Doctors can figure it out for you guys soon.

Daveo1410
Daveo1410 in reply to Buddy2009

Thank you :)

Did she have an MRI of her spinal cord or just her brain? MS can begin with spinal cord lesions which can cause numbness just about anywhere on the body.

Daveo1410
Daveo1410 in reply to BettysMom

It was a full MRI of her spinal cord and brain. :)

You’re a good partner to be so on the ball with investigating. Way to go. Everyone is different as far as symptoms as has already been said. At this point it sounds like a guessing game until they figure out what’s going on with your partner. Or make their best guess? The best idea in my mind is to have a great neurologist to follow up with you. My MS started with double vision and I denied the diagnosis for years; but it doesn’t so much matter what it is actually called. I work with an incredibly neurologist who listens to me and cares about my input regarding the different therapies and treatments. Stay involved; doctors are only human. You are smart for getting online and finding out other people’s experiences! Best of luck.

For me it started as odd vision issues. Another test for me for MS was a spinal tap.

Daveo1410
Daveo1410 in reply to sashaming1

Was your MRI normal?

sashaming1
sashaming1 in reply to Daveo1410

I recall that they saw something.

Hi Dave. I hope you and your partner continue to get good news from the doctors! When I was diagnosed with MS thirty-three years ago I experienced those same symptoms. I had numbness and tingling from the neck down to the end of my finger tips and toes. It was a weird sensation and a bit scary. Just keep talking to other people and each other!

Daveo1410
Daveo1410 in reply to MaMere2

Hi MaMere, was your MRI normal at first?

I had seizures several years before being diagnosed and my MRI was normal. After I was diagnosed I found out it was all related.

Was that a full spine and brain MRI or just a brain MRI Mike?

I was so out of it (for an entire month) I have no idea. I would guess just brain but having 2 grand mals back to back really made my brain messed up for quite awhile. I was off work for 6 months.

Sorry you had to go through that sounds horrible. My partner had a normal MRI of brain last year and normal MRI of both brain and spine yesterday so hopefully that has put to bed MS but lost why the numbness is all over. 🙄🙄

MaMere2
MaMere2 in reply to Daveo1410

I'm sorry to say I can't remember. It was a long time ago. 😔 Because you had to have 2 exacerbations before a diagnosis, I'm not sure they knew what they were looking at or looking for in regards to the MRI. It was new medical technology back then. The FDA only approved the use of the MRI "machine" in 1984 or so.

Daveo1410
Daveo1410 in reply to MaMere2

I struggle to remember what I did yesterday let alone years ago 😅. I’m quite positive as apart from numbness all tests with doctor and now two normal MRIs that are completely clear should hopefully rule it out.

Some people have clear mri’s but still have the o proteins in spinal fluid to indicate ms

I would think that would be the next step when she sees the Neurologist shortly. I think they said two completely clear MRI and examinations would make MS extremely unlikely. Just begs the what is it question now

You wud be amazed what they can tell from ur spinal fluid. It amazed me

Hopefully that will give us the clues on what’s causing the numbness. She feels completely fine apart from that

It does sound like a mystery.

Daveo1410
Daveo1410 in reply to MaMere2

Hi MaMere, with your numbness you mention was it on one side or everywhere below the neck? :)

I just kept falling down! Down the stairs, Through a table... It wasn't until my legs stopped moving completely (on a bike) and I broke my arm in 4 places did I ask the doctor why. MRI then to a neuro who did the lumbar puncture that it was confirmed.

Ya sometimes those lesions can hide from the mri’s. Tricky lil gremlins.

Hi - my MS started with very similar symptoms to what you're describing - and the tingling/numbness would come and go. I had a brain MRI and they initially missed it, but an MRI of the neck (spinal cord) showed a problem and later my neurologist went back to the brain MRI and found a lesion there too. So I would recommend asking for an MRI of the neck/spine. It's not always in the brain.

Daveo1410
Daveo1410 in reply to Petunilla

First MRI last year was just head which was normal the one this week was full head neck and spine :) Oddly the tingling is only if she sits awkwardly etc. The numbness came and hasn’t got now for two weeks oddly.

From what I'm reading here I'm reminded that there are spine MRIs that deal with, I think, body issues rather than the eye issues that I had.

Daveo1410
Daveo1410 in reply to sashaming1

Thankfully the MRI of her spine was completely normal :)

MRIs typically only look at the brain's gray(white?) matter and can miss lesions that can still cause symptoms. The fuller MRIs take longer and are more expensive.

Yeah she has the full MRI this week it took over an hour. In the UK it’s free on the NHS. That was all clear both brain and spine completely clear

Hi dave I kno what your wife is going thru been having really bad symptoms so scary like her i had headaches & jerking i had a mri in the dec 2020 which showed nothing but since then i've been so fatigued shaking legs when standing & tingling when resting & spasms all over my body memory loss & still headaches daily, jerking in my sleep too cant cope with one simple task without feeling weakness getting myself worked up as living like this daily now bed bound i hope ur wife gets some answers soon because u just want peace of mind of what it is causing these health issues frustrating & very worrying for her & me being in the same situation :(

Have they found out what could be causing yours?! My partner had the headaches and only numbness in certain areas. Did they do a full head and spine MRI for you? Hope you feel better soon

So an update. Now numbness everywhere and very slight lack of strength in right arm. Went back to hospital met with doctor. So MRI they did last week was oddly only of spine and that was normal. Last brain scan was 2019 which then was clear. They doctor did say her symptoms don’t present as normal MS or GBD but can’t rule out either way. They want another brain scan but will wait until she sees Neurologist on 6th of April who will then refers so annoying they didn’t do a full scan the other week. With symptoms I know doctor said they aren’t presenting as normal but kind of sadly accepted she has MS :(

kdali
kdali in reply to Daveo1410

My first scan was only of the spine also because they were looking for a tumor. A lot of my symptoms are not typical. Did she get steroids?

Daveo1410
Daveo1410 in reply to kdali

She had an brain MRI in 2019 which was normal and then the spine MRI the other week which was normal. They will do another brain mri soon I guess. She isn’t on anything at the moment. But all over numbness head to toe and now right arm v slightly weaker. If it’s not MS I’m lost what else it could be

kdali
kdali in reply to Daveo1410

Increased weakness is something you could call about, maybe it will get you seen faster. I’m sorry you guys are going through this 😞

Yeah we did and didn’t get us to far 😅 only assessing again and saying about waiting for Neuro appointment. We have paid to go private on 31st of March now. Odd though how head to toe numb and now both arms feel a bit weaker and tingling on face and leg. All this from numb thigh areas to now everywhere in 3 and a bit week. Doctor did say it doesn’t present like Gullian Barre or MS so I think they’re quite lost currently :(

kdali
kdali in reply to Daveo1410

How is she doing now?

Daveo1410
Daveo1410 in reply to kdali

Since onset which was 4 weeks ago she is numb from head to toe. Weakness in arms varies. Not the full power there was prior to two weeks ago. Few days woken up with lower back pain and felt really tired. Very little pins and needless unless leant on them for ages. Today she feels really tired and arms weaker and back hurts. I’m convinced it’s MS but she seems to have quite a lot of onset symptoms in a few weeks especially when MRI of spine was clear. Specialist is this we’d and I’m sure it will be a full head mri. If this wasn’t MS I would be lost what else it could be? 🤔

kdali
kdali in reply to Daveo1410

I’m sorry she hasn’t improved much with rest 😞 Please let us know what happens at the office visit. As to what else it could be, I hope a brain scan and more tests can give some clues.

Daveo1410
Daveo1410 in reply to kdali

The only other thing I think could have caused some reaction is the COVID jab she has 7/8 days before the symptoms first started. How did yours start and how long did they first last?

kdali
kdali in reply to Daveo1410

I’ve had 2 events that took 3 months to resolve. The first one I thought went away forever, but it keeps coming back and I’ve had several spinal lesions since. The optic neuritis that got me diagnosed was hell for 3mo and I have permanent vision loss from that. No spinal lesions is a great thing!

Daveo1410
Daveo1410 in reply to kdali

On your initial MRI did they find lesion in your spine and head? Yeah I heard spinal lesions in certain locations can be worse long term. Feel sorry for anyone that has to suffer. Thankfully reading being younger and having so DMT available give a greater outlook then say 10/20 years ago

kdali
kdali in reply to Daveo1410

My very first MRI was neck without contrast to rule out a tumor. The next was thoracic because I had a shoulder complaint, which apparently meant everything neurological was to be ignored, and I was told I didn’t have MS, so the brain scan wasn’t necessary and to go do some yoga. No lesions on those. 8mo later my head and neck show old lesions, active lesions, new lesions. Then I was able to have proper treatment, but too late after symptom onset to gain benefit steroids. Yes, I am hopeful still that new therapy can delay progression!

Daveo1410
Daveo1410 in reply to kdali

Wow shows how useless health care can be with MS. How did they miss the neck lesions if they were old months later? She has had a full spinal mri top to bottom.

kdali
kdali in reply to Daveo1410

I believe the slices were larger because they were looking for a tumor. They only abnormal note was altered blood flow, which could have been a sign then, but it was dismissed since I “did not have MS”.

Daveo1410
Daveo1410 in reply to kdali

Oh ok so had they look in more detail they would have found it a lot earlier? Sorry you had to go through that shocking care.

kdali
kdali in reply to Daveo1410

Maybe 🤷‍♀️ Ty! I clung to that “no MS” and was in denial for a while, despite my husbands urging to get a second opinion. It all possibly cost me my vision. I’m glad you are keeping at it and trying to find answers.

Daveo1410
Daveo1410 in reply to kdali

What was your symptoms?! How quickly did yours start and last?

kdali
kdali in reply to Daveo1410

My current event started with vision changes, lhermittes with shocks to one foot, increasing leg stiffness, and limb numbness. I’ve had low dose steroids with a few days of worsening limb issues that resolved after that, but it was frightening...the feeling of ants biting one side and shocks to the other, with weakness. My diagnosing event was optic neuritis, but I have had it at least twice before then. I am also seeking a specialist’s opinion. The wait is painful mentally 😞

Daveo1410
Daveo1410 in reply to kdali

Oh so you haven’t been diagnosed with MS then yet sorry?! Was your lesions on brain or spinal MRI? I’m sorry to hear of your symptoms. Oddly before he brain MRI 16 months she said about crawling along with migraine and slight blurred vision for a day or two but that MRI was normal. They even checked it again last week at A&E

kdali
kdali in reply to Daveo1410

Yes, I was diagnosed in 2016. Sometimes there are similar looking spots with migraines, so perhaps is a good sign that she didn’t have any.

Dave, I had numbness all over the body. It feels very weird. I couldn't wear stockings. I wore pants to work until I got used to the feeling. The arm weakness and tingling is from numbness. Tingle is just letting you know your losing feeling there or have already lost it and that's what's left for now. I get tingle in lots of different places off and on all the time.

Daveo1410
Daveo1410 in reply to MaMere2

Sorry also have you symptoms got a lot worse after having it for so long? Intrigued that yours started similar to Rehannas

Very similar to Rehanna. How long did yours last for?! I’m now 99% sure she has MS. She has had these symptoms for 4 weeks now. I know spine mri was clear and brain 16 months ago clear. She also had tingling in head and like a crawling feeling only in hair.

MaMere2
MaMere2 in reply to Daveo1410

I did not have that crawling in the hair. I did not have any symptoms in/on my head at that time. I get tics sometimes on my face and because my left side is weaker there are some issues on my face - a little drooping. I also have dermatology issues with my scalp. I have some sort of dermatitis that gets treated with special shampoo. I don't get dandruff but my scalp gets red and itchy. My MS has gotten worse over time, but I've been very lucky. I have stayed on a DMT and stayed healthy. I exercise regularly and try to eat healthy. I do enjoy an alcoholic beverage almost everyday (beer or wine). My preferred form of exercising is Pilates and walking on a treadmill which is flat.

Nice to hear after living with it for such a long time that you’re active and it isn’t stopping you living your life, even more so when maybe when you were diagnosed when treatment isn’t what it is now. The crawling she had in her hair before her original head mri and the dodgy eye which was normal. I would be surprised if we don’t find out in next month it’s not MS would be even more surprising then and at a loss as to what it could be apart from a reaction to the vaccine

We just had back the brain scan results and they were all normal so she doesn’t have MS. Specialist was brilliant he is an MS specialist and when he examined her last week said it isn’t MS in his view but couldn’t say for 100% until that MRI came back. She does have an Evoke test booked but he said it will go away just hard to say when as 9 out of ten Neuro cases like this we never know what causes them. I’m convinced it’s a reaction to the jab but at least some good news today ☺️

kdali
kdali in reply to Daveo1410

Great news!

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