Out of the blue and scared witless

Hi everyone,

Hope it’s ok for me to post here. Last week my wife was told by a neurologist that she may have MS. This was entirely unexpected by both of us and we’re both just floored and devastated. No confirmed diagnosis yet but the neurologist said that his suspicion is strong.

Her issues started 10 years ago with an unexplained bout of pins and needles that lasted a few weeks. At the time it was checked but stress related peripheral neuropathy was suspected. About 7 years later, she started getting occasional migraine. Then in the past 2-3 years she has since had what the neurologist called 2 ‘key events’, both of which were separate.

First she had what he thinks was Lhermitte’s sign for a few weeks, this went away and nothing since. Then sometime later she experienced complete numbness from the waist down for 2 weeks but she didn’t lose mobility. We can’t remember what the timeline is between these things, but they were separate.

There are no residual symptoms/impacts now and no other symptoms were ever manifest like bladder/sight/mobility/balance/coordination issues. All of her physical tests are completely fine. The only reason she was referred to a neurologist by the GP was was because in this time the migraine has progressed to become an almost daily event and she gets fatigue both of which were very debilitating for her, so the GP referred her for a brain MRI and then to the neurologist. The MRI showed white spots which is what resulted in the referral.

When she went to the neurologist he did the physical tests which again showed no worrying signs. He reviewed the MRI and said yes, classic case of migraine. Then my wife said just to be sure I want to mention these issues I experienced in the past and he instantly jumped to MS. It was like being punched in the gut. He prescribed her Vitamin B2, Vitamin D and Magnesium for the migraine and referred her for tests. She has been clear of migraine and fatigue for the past 6 days which has been the longest without migraine in about 2 years, and without the migraine she’s 100% healthy. She got loads of bloods done and a chest x-ray and ECG to assess suitability for medication. We are waiting for the next appointment after the bloods come back in 4-6 weeks, and no further MRI or anything has been scheduled yet.

I guess I’m posting because I’m just terrified and don’t know what to do, we’re in this limbo now while tests etc are done and it’s awful. I’m scared for my wife’s health, I’m scared for our future, I’ve no idea what to expect in terms of prognosis because I’m too afraid to look it up. I’m a ball of worry and stress and trying to put on a brave face for her sake but she can see through it. I can’t eat or sleep with anxiety. She is surprisingly calm, collected and positive (relatively) about it all, but I am not so resilient. She doesn’t want anyone to know until we know what’s going on so I have nobody to really talk to about it and I feel like I’m going to crack up.

I’m not sure what I expect to get from this post, or why I’m unloading here, but thank you for reading. I wish you all well in managing your own illness.

Well, on a good note, if this is “all” she’s been dealing with for 10 years, then she probably has Relapsing-Remitting MS (RRMS), which is the best kind to have if you really have to get it.

MS will always be disturbing, because just when you get used to what it hands you, something new will pop up. The best that I can offer is to just adapt to the new normal. Understand that some of her symptoms will come and go, and like with the extreme fatigue, you may have to change your lifestyle a bit to adjust for it.

They have come out with some wonderful drugs over the last 25 years that help to lessen future issues. If she’s actually diagnosed with MS, your neurologist will discuss several options with you. Research them all carefully, because they all come with potential side effects. MS for most people is no longer the tragic, crippling disorder that it was many years ago, because these drugs really help. You’ll see them described frequently as “DMT’s”, which stands for “disease-modifying therapies”.

Playing the Waiting Game is the hardest part, but don’t be scared. Your wife will be no different tomorrow than she is today. Stay away from Dr. Google and learn what you can from forums like this and official MS websites.

If it’s any comfort, I’ve been dealing with MS for about 45 years now, and I only recently had to quit working. I still live alone, do my own house and yard work, and as shocking as it is to some people, I even still drive occasionally. I’ve learned what makes my MS worse, so I avoid those things as much as possible. It’s mostly just a matter of learning how to pace yourself and rest when you need to rest, even if other people think you’re okay because “you look fine”.

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Thank you for taking the time to respond to me, it means so much. Your words have given me some comfort and I’m glad to hear that you’re coping well with your own fight against it.

My wife and I have a very active life, we love to travel and spend so much time hiking and exploring the wilderness. As well as that we bought our first house just a few years ago, and we love to spend time working in our garden. Until last week we just felt that our life was as good as it could be and now it just feels like everything is being ripped out from under us. It’s a very hard thing to accept.

I find myself gripped with fear now if she so much as sneezes, I’m going to make myself sick with worry and stress. She’s a big believer in meditation and diet for wellbeing so she’s very in tune with her body. I just hope that we can maintain our quality of life for many years to come.

One thing I should add that may relate to your hiking – Many of us develop significantly more issues when we’re active in hot weather. You may find that you have to limit your travels to cooler times of year. So, if you’re walking through someplace in July and your wife starts having problems, don’t assume that you can never go back there. You just might need a different time of year.

I planted a small garden this year, and I did just fine going out first thing in the morning and later in the evening. I just have to avoid the bright sunlight. And a few months ago I single-handedly made a 4’x8’x16" shelving unit for my kitchen, although I did need help moving it into place.

Just work with your wife as she learns when to take it easy. There may be long periods when she’s mostly “normal” and then episodes when she needs to rest a lot and may have some new issues. Until she figures out the pattern that her illness follows (and some people never develop one), her needs may change on a dime. I can be just fine when I get out of bed, but then suddenly I need to lay down for an hour or two. Or I’ll be walking along okay and without warning I have to stop and rest. Understand that she’s not being difficult or trying to ruin your fun. This is just the way it has to be from now on.

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Hi cart before the horse…comes to mind.

Whatever it is been ongoing over 10 years, and she is still basically mobile and seems to have more migraine then other issues. Also the neuro isnt basing his possible diagnosis on much.

I started before 2000 went blind temp anyway fast forward a ton of tests and changes in my life and mobility and finally diagnosed with MS 2016.

WHITE spots MRI can be the migraines. you said neurolgoist did physical tests which again showed no worry signs. Now i find that odd as surely if he thought MS it would show signs. Mine did.

You say you hike a lot have you checked Lymes and migraines? Also errr women of certain age can get some weird changes including migraines when they start menopause.

Also Lhermittes sign is not only associated with MS.

I am not sure the neurologist should have mentioned MS as yet to be honest. Please look up the MacDonald criteria for diagnosis there is a long road ahead yet.

What I am trying to say is this, dont panic yet Mr Mannering as its very early days and nothing really positive towards MS. she may have previously had a clinically isolated episode.

So please stop worrying yourself sick. If she starts to sneeze i would be more worried about her having covid or hay fever lol. bless you.

I think your wife is a very wise women. MS is what it is. I am sure after 10 years she would have more positive signs towards it. Also her physical exam would not be normal but I am not a doctor only what I know in my own journey. Oh by the way I have never experienced Lhermittes sign neither have a lot of my MS friends. xxx

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Hi. I understand your worries and fears for the future. But if your wife seems quite well now, as the migraine has ceased, I wouldn’t dwell on it being MS. My own diagnosis took 22 years…
Hang in there chuck…no- one can give a prognosis anyway.
Lots of love xxx

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Thank you again everyone for your kind words and comfort, it does mean a lot and is a tremendous help. We will take all of your advice onboard. Having read a lot of the posts here on the forum I am very surprised that the neurologist has been so quick to suspect MS when I see so many others experiencing much worse symptoms than my wife and struggling to get a diagnosis. The neurologist we are dealing with is a specialist in MS and very well respected so we have no reason to doubt his suspicions, but I just find it very odd that our experience is so at odds with many others. The more we think about how the consultation played out, the more annoyed we are that he jumped straight to that conclusion without any more evidence than a brain MRI and 3 events in 10 years. He maybe could have been a bit more tactful.

Of course it is early days for us yet, we still need the spinal MRI, blood results and lumbar puncture before any diagnosis might be made. We try not to hold onto false hope because neither of us want to go through this experience a second time, but it’s hard not to hope for a better outcome.

For now my wife is well, the best she’s been in a year because the migraines have gone completely, so we are taking some comfort in that.

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so dont you think she could have been low on these essentials and that is why her migraines have gone. so not part of MS?

i AM NOT SAYING IT ISNT MS. It could well be but a specialist in MS should have more sense IMHO.

Look up the MacDonald criteria. I find it more odd she presented with NO issues on neurological examination but he still mentioned it.

I will say this i paid to see 2 MS specialists and one said i had M.E., the other said I had Functional Neurological Disorder. My own doctor also a specialist stuck with me from 2006 and finally got the last piece of the puzzle and diagnosed me confimred through VEP test i had progressive MS.

If it is MS nothing immediately will change she will just have a label. People sadly have this vision that MS is some horrible disease that puts us in a wheelchair and turns our brains to mush. A women is more likely now to end up with breast cancer then MS. 55,000 women a YEAR are diagnosed of breast cancer right, and 7,000 people a year are diagnosed with MS including men.

As we get older we have more chance of being ill. i was with my husband for 30 years he had COPD and we had a wonderful life together. we both faced each others illness together. Sadly i lost him 2017. No one knows how our lives will pan out. So its best to just enjoy each others company the best we can and make every day a good one.

You dont say how old your wife is. Not that it matters really its just like for me my MS probably started when i was about 47 classic PPMS.

I am glad your wifes migraines are gone, but it seems to point to lack of essential vitimins rather then MS, so i would probably take that one off the table for her having MS. I would say looking back she could well have had a CIS. clinically isolated syndrome, which over time can turn into MS.

If her final diagnosis is MS at least the two of you will be fully armed with all the right information…

in the meantime, plenty of healthy food and just enjoy life. x

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First and foremost my sincere condolences on the loss of your husband. Thank you again for taking the time to reply to me and for your wise and kind words.

Not sure if it was clear in my original post, it’s probably hard to follow, but the MS suspicion was not a result of the migraine at all. The way the consultation played out was that it started as a migraine investigation with no mention or note of her historical nerve-related episodes. The neurologist reviewed the MRI, asked about her migraines and said that he thought it was a case of classic chronic migraine, take these 3 supplements daily and manage the symptoms as best you can. We’ll revisit it in a few months time. No blood test or anything has ever determined if she was deficient in any of those things but he said that those supplements can help with it.

Just to be sure that nothing was being overlooked my wife told him about these historical episodes that she had had and instantly he said oh I now suspect that it is MS, probably RRMS. He said that her Lhermittes episode was the biggest red flag for him, “classic MS symptom” was the expression. He did the physical tests like checking her balance, strength, reflex responses, eyesight, etc. and said that everything was perfect. My wife further asked about the migraine and he just brushed it off saying it was unimportant now and that the MS is what we’re treating as the priority, even though she’s had no nerve trouble in 2 years and the migraine was debilitating her on a daily basis. He sent her to get bloods done then and that was the end of it, we’re waiting for the follow up now.

He never mentioned any other possible cause, my wife asked if it could be something else or if he was sure she had MS and he said that it was his strong suspicion. We had no reason to doubt him of course, not having ever researched it, but now reading all the posts I’m concerned how quick he was to jump to that without much basis for it. In any case there’s little we can do now other than wait and see what the bloods show and take it from there.

WOW hun if only it was that simple.

I would change your neurolgoist i have never in the years been on this forum seen any neurologist look at MS straight away because of Lhermittes sign. Really.

If she had MS one would expect some of the tests would be abnormal.

My first sign was blindness in one eye temp. This too is classic onset MS. BUT my GP etc dismissed it.

This is my journey if your interested. The beginning – My Journey begins in Brazil. – My Journey with MS

I just dont want you to think i am dismissing MS I just feel this guy has added a lot of stress to you unecessarily.

She seems totally stable at the moment and long may that last.

This is a classic case of non-specific white hyperintensities on an MRI scan.

When the neurologist only heard about the migraines it appears that he read the MRI scan in that light, and thought that they fitted. However when he heard the much longer history he then began to think that those same non-specific white hyperintensities could possibly be due to MS.

That is why it is important to have a detailed history, and to do a detailed examination, and then to carry out appropriate tests. Only then might they be able to reach an accurate diagnosis. It sounds as if he’s now going through getting the appropriate tests done.

Non-specific white hyperintensities on an MRI scan are the bane of neurologists and patients alike! Many things can cause them - hence called non-specific. They show something is going on, but they can’t by themselves determine a diagnosis.

A very useful quote from a discussion about non-specific white hyperintensities.
“Radiologists often state non-specific which may not mean non-significance. In order to establish clinical significance the findings should be correlated with a clinical history and examination.”

Your wife’s consultant has taken the history, done some physical tests (which luckily appear to be normal). He’s ordered some blood tests. That should rule out or in some things. He may well go on to further tests such as additional MRI, lumbar puncture etc.

Hopefully it will turn out to be just migraine. It is good that the supplements are helping too, so something useful has already come out of the consultation. If it does turn out to be MS then it is good to know sooner rather than later as there are treatments that slow down progress.

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good post, but the point being I made is why put MS on the table until he is sure. This has caused immense anxiety to the partner. We have talked about this before. My neurologist from the get go with really good proof of MS never once said it could be that, just I had a mystery which he was determined to solve even though it took a long time he did.

I so agree with you though you must go in with a comprehensive timeline not one that is full of little things, but the things that really bother you.

I had an LP all it did was muddy the waters, was a total waste of time. Even though its results were NEGATIVE for MS I still got diagnosed with Progressive MS down to two positive VEP tests which had changed over time to show highly active lesion …

Thank you again for your input. Sorry for the delay in responding I took a break from research and posting for a rest, my anxiety levels are through the roof so trying to reduce stress.

The term ‘hyperintensities’ definitely rings a bell, this was mentioned for sure but he didn’t explain what they were. He said something about the location of the white spot on the MRI not being where you’d commonly see it with migraine, but it’s all a bit of a blur to be honest.

Migraines have returned so the reprieve was short lived. My wife is continuing to take the recommended supplements so we will see how it all develops. We are still 2-4 weeks away from getting the blood results back so won’t be much else to say until then I guess. For now my wife continues to remain positive and hopeful for an alternative diagnosis.

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Anxiety is very painful. Worried spouses can sometimes get some relief by shifting their focus from their own concerns and placing focus on what their partner needs from them right now. Concentrating on supporting another person and taking the lead from them can be helpful for both.