Limbo, again

New diagnosis and before diagnosis
1

Hi there,

I’ll try to keep it short(ish) this time. I’m a 32 year old female, currently living in Germany and liking it. The reason I’m here is because I’ve been in limbo for over a year now, with what could be seen as 3 relapses of something that resembles (RR)MS. No definitive diagnosis though, but I’m having my second MRI soon. Until that time, I’m left wondering what’s wrong with me. Most of what it could have been was ticked off the list already, with MS and stress remaining as likely candidates.

Basically, it comes down to the fact that in 2016, I’ve had two distinct relapses, the first involving my right leg (sensory issues) and the second also involving my left hand/arm, then also including muscle weakness. Both lasted about two months, with some lingering problems afterwards. My GP suspected MS and forwarded me to a neuro, who ordered an MRI of my head in Januari 2017. That first scan showed no abnormalities. We then had a chat and decided to leave it at that, but as soon as it would rear its ugly head again, I’d have to check in. The logic was, that it was caused by stress, and if so it wouldn’t reappear if life would be a bit more kind.

Well it did happen again, without stress to trigger it… So, I’m having another MRI on the 27th of January. There’s so many things going through my head right now, it’s a rollercoarster ride in hell. The more I experience these relapses, the more it seems like it might be MS. HELP!! My neuro still seems to keep a positive attitude, saying it might still be stress, but my head is spinning and I’m trying to keep as calm as possible.

Did anybody (who does have a positive diagnosis) also get a clean first MRI? How did you cope when the problems came back again? This whole limbo circus has been going on for over a year now, and I’m not sure what to do except for waiting for my appointment and trying my best not to let this govern my daily life too much. Which is damn hard when you keep experiencing symptoms :frowning:

Thanks!

~ E

2

Hi Epiepo

For some people, the limbo time does seem to stretch on and on.

I’m in a completely different position to you as I had a couple of lesions from my first MRIs plus positive LP and VEP.

But others do struggle for months after having negative MRIs. I should think if you have a second negative MRI at the end of the month, that perhaps it’s not MS and you could try to investigate other causes.

But I suspect it is possible to have a negative brain MRI and then later to be diagnosed with MS. For example, if only the brain is scanned, perhaps there’s lesion(s) in the spine at this point.

It must be a really frightening place to be right now, fearing the worst, but being unsure whether the evidence will be there to explain the symptoms. I imagine that in your place, I might be fearful of an MS diagnosis, but almost as fearful or not getting the diagnosis, as then the symptoms are unexplained.

At least if you are diagnosed, it sounds like it would be a diagnosis of relapsing remitting MS, which means you can take a disease modifying drug. The aim of these is to reduce relapses and the severity of relapses. So it might be that you don’t have any more relapses after diagnosis.

Hopefully you’ll get an answer soon after the 27th, preferably one that you can deal with. Feel free to keep coming back here for help and advice.

Sue

3

Thanks. Well yes, if this second MRI is negative, I’ll hopefully be able to close the book on this. Fingers crossed!

My first MRI was only of my brain, the second one will involve my c-spine as well. I haven’t had a LP or VEP, but they did do a SEP (electrodes all over your body), which didn’t show abnormalities, and any number of blood tests. All in all, this is a pretty shitty place to be in, with no evidence for or against it.

As for the fears: I think you’re right in a way, the thought of maybe having MS is looming over me, but I very much want to know what’s happening so I can do something about it. Not knowing when you’re experiencing very real issues isn’t a nice place to be in. I guess the second MRI will tell me what direction to look in next. If it’s stress I guess lots of yoga and sports as good a place to start as any :slight_smile:

Yes let’s hope that, even with a diagnosis, there’s a way forward. I know there is. But with everything that’s been happening, that might seem so far away right now. Off to the gym!

4

So I just got the results from my second MRI: everything’s looking the way it should for a 32 year old woman, no signs of MS or other pathological processes. That’s my second clean MRI in a year time, whereas MS would most likely have shown progression. This practically excludes MS as a possibility for my symptoms.

The last few episodes did change me in a profound way. MS always was a real possibility, and the thought I might have it did put my life in a very different perspective. Some things in life, we can’t control. There are things that happen that are bigger than ourselves, not in a spiritual but in a very practical way. These times have taught me about my own limits, shown me that there are things I took for granted that not everybody has and that we might lose these things at some point. To be more precise: it has showed me to take every day the way it comes and to let life happen.

Most of all, I have (hopefully) learned to be more empathic. To listen to people more, to be there when needed and to be less judgemental concerning those who might not have the same luck (!) I do. Because that’s what it is: it’s just good or bad luck. This time, I got heads. Next time, it might be tails.

Perhaps it’s just a bunch of personal experiences, but I do want this to change me. You have garnered a supporter and ally.

Best of luck,

~ E

2 Likes
5

I’m glad to hear of the negative MRI. Hopefully now, you’ll move on in a healthy and happy future.

All the best Sue

6

Great news! Hopefully whatever it is / was causing your symptoms has stopped and doesn’t come back. Or if it does, I hope you can find some answers. I’m currently stuck in limbo land, with 2 confirmed brain lesions and waiting to see the neuro in March. Trying to stay positive! All the best to you!

7

Hi there,

And I’m back again, as about 5 weeks ago, I’ve started relapsing again after getting the flu the week prior. This has been a pretty bad one, with bad pain radiating from within my spine itself, nausea and vertigo, seeing flashes of light, partial colorblindness in my right eye, problems with contrast and my old symptoms reoccurring. And, my personal favorite: when I bend my back forwards, my entire body below the point in my spine where it hurts so much feels cold. That one really freaked me out…

About 4 weeks ago, the vertigo, nausea and back problems put me in my GP’s office, who referred me to a neuro in the hospital here. Still waiting on the appointment, which is on Febr first. Then, a couple days later, I got pain behind my right eye and started to lose my color vision and contrasts, as well as seeing flashes of light in dark environments or when suddenly having to move my eyes (traffic is a blast). Furthermore, when I have sudden changes of light or scenery, such as moving into another room, looking at a light or turning my head, my whole field of vision ‘flickers’, it’s as if I’m looking at a 10 FPS movie clip. Kinda weird, and it doesn’t happen when I keep looking at the same stuff. Apparently the flashes of light and flickering are a very bad sign, as it put me at the ophthalmology ward within 3,5 hours of having visited my GP.

The positive news first. My retina and vitreous aren’t detaching. Which, apparently, could also be a cause for seeing flashes. So my eyes themselves are in prime condition, which I’m still kinda proud of, being the only one in our family who has never needed glasses. The days after, I had a number of other tests, with the ophthalmologist telling me in the end it was an ‘old’ case of optic neuritis and forwarded me to the neurologist for confirmation. So, apparently I’ve had it in the past already, and it’s playing up again. As for the whole FND/stress hypothesis, I also specifically asked him about that. But he was convinced wasn’t due to that, so that’s kind of a downer. However, at least it’s something solid, which I’m also kinda happy about, to be honest.

So. Here I am again. In the mean time, my vision problems have subsided a bit. The relapse is still going on and I’m still getting the flashes. Also, when I’m showering, my color vision is reduced and the flickering starts again… Which actually would have been kinda funny to experience, if it weren’t indicative of a disease such as MS chipping away at my optic nerve(s). Generally, heat is a problem. I’ve discovered my own ‘personal limit’ is about degrees 23 C. (73 F.), at which point life gets very hard. Back pain, vision problems, nausea, vertigo, confusion, no memory… It really puts me back right where I was about 3 weeks ago, when my relapse peaked. I did go to work after the christmas holidays though, but it’s no walk in the park.

more TBA!

8

I am sorry to hear you’ve been back in the wars - that must be a shock to the system. I hope that you latest round of symptoms at least leads to some clarity about what is the matter.

Good luck, and I hope you feel better soon.

Alison

9

I didn’t yet have any truly shining experiences concerning neurologists. Well the one here from yesterday was OK actually!! Yesterday morning, I was first seen by this resident in the final year of her neurology training programme. She first took 30 minutes to listen to my entire story. Just asking and asking, every detail. Really nice, and quite contrary to what I’ve had in Germany! She then did all possible neurologic tests, tendon reflexes, etc… I’ve been talking a bit with her about neurology as well, since I’ve studied to become a cognitive linguist myself.

In any case… After the talks and tests, she told me I have asymmetrical and brisk reflexes. On my right foot’s sole the reflex is missing completely, with the left one working normally. The fact this occurs asymmetrically was concerning to her, and this issue was already discovered by my GP at the very beginning of my relapse start, last December. Also, my neuro found another reflex on my arm was too strong or something. So I’ve got these two reflexes that are off, which apparently is a bad (objective) sign. But, she mentioned the spots on my legs don’t necessarily adhere to one single nerve area, which she found to be atypical, albeit subjective. She then went on to conclude my story generally warranted further MRIs and other tests, and found it to be suggestive of MS.

But, she also mentioned she had to take into account that my two previous MRI’s were negative, so she phoned her supervisor and was called into a briefing straight away. During the 10 minutes alone in her office, I had some time to calm down and write a friend. She then came back and told me that with the negative prior MRIs and the suspected optic neuritis in mind, they would like to do a VEP first. In the mean time she will look over my old MRIs with yet another neurologist who specialises in MS. And in case the VEP confirms my ophthalmologists’s suspicion of optic neuritis, or if they see something out of the ordinary on my old scans, an new MRI will be planned.

That VEP is on the 25th of febr, and the results will be discussed on the 5th of march. I’ve got an appointment at the ophthalmologist first that morning, and the neuro later in the afternoon. Which means I’ve got yet another month to slowly ease back into my ’normal’ self, whatever that may be.

The wait is endless it seems. But, the wheels are turning!

EDIT:

I’ve searched a bit more and found a letter from my first neurological exam, stating the reflexes back in January 2017 were not hyperreflexive and not asymmetrical, which they are now though. which means they went bad sometime since then.[removed by moderator] !