I don’t quite know where to begin; I’ve been lingering on this site as an observer for a while now but tonight I feel truly fed up, as I’m sure many of you have done before.
I’ve been experiencing various symptoms now for over a year. I know I’m a lucky one in that tests etc. have happened relatively quickly. I’m currently waiting for the results of a third MRI scan.
During my first scan I was told I have numerous lesions, of various sizes, all over my brain. I’m 35. I was experiencing debilitating migraines, random ptosis (drooping of the eye), falling over, dropping things, poor fine motor skills, bumping into things, word finding difficulties, dull aching leg pain, and various other symptoms. I was told by the neurologist that these didn’t fit with MS, nor did the lesions as there’s no particular pattern. Lumbar puncture clear. However, they’ve ruled out everything else.
After 5 months of almost no symptoms, the last three weeks I’ve been getting sharp stabbing pains all over my body at random times, lasting a few seconds; tinnitus, and all the other symptoms mentioned previously.
My headaches are mostly controlled now due to amatriptyline.
I’m fed up with the pain which isn’t too painful as such but very irritating. I’m exhausted; I’ve had to take the day off sick as have felt I needed to sleep all day. I feel like I’m going mad; wondering whether my brain is making the symptoms up (I should say I’m a clinical psychologist) I’m scared of the results but also desperate for a diagnosis. From what I’ve read my symptoms seem to fit with MS.
I can go from feeling fine to irritable to tearful. I know all of this is a normal reaction but it’s so frustrating.
Sorry for ranting, but thank you if you have read this far. I think I just wanted to reach out to others who might understand what this is all like.
Thank you for replying. Thankfully I have a very understanding manager who is allowing me to take each day at a time. I think I’m going to wait to see what my consultant says and then decide whether a break from work would be helpful so I can get my head around things.
Thanks again for reading and taking the time to reply.
You say your scan showed lesions. Each lesion is a little bit of brain damage, so may well explain some or all of your symptoms. There is certainly something going on in your brain physically. However the brain is also very good at making new connections (and why those with RRMS get periods of remission) and can work round some of those bits of damage.
Sounds as if your lesions are what they often call ‘non-specific’ lesions i.e. can be caused by a number of different things so it is not possible to pinpoint the actual cause. Migraines, high blood pressure, diabetes, lymes disease, ms can all cause these. Neurologists have heart-sink with these - and so do those who have them … no easy answer just yet for the patient.
So it sounds as if you are entering limbo-land. That place where they haven’t got enough to reach a diagnosis. It is a very difficult place to be, with symptoms but no answers.
There are things you can do though. Check your blood pressure, and make sure you are not prediabetic. They are things that can be reversed. Look at your diet and see whether you can improve that. Some diets such as the paleolithic diet seem to help people with a number of different neurological conditions. One of the things they do is reduce inflammation, and inflammation is behind most chronic ill health. Reduce stress levels - which admittedly is not easy when you are struggling with illness and don’t have a diagnosis! But any little helps. Think of your body as a whole body and try to optimise the whole of it.
As EastendGirl said, keeping a diary is a sensible thing to do. I must admit I don’t do it because I try to ignore / block out my symptoms, and get on with life as best as possible. I’ve been in limbo for a long, long time.
Thank you for taking the time to reply Ziola. I’m definitely in limbo land. And yes they are currently non specific lesions but hoping the MRI scan I had on Sunday might reveal more. Tests have ruled out everything else. And thank you for the advice, I’ve been keeping diary of my symptoms and have shared this with my consultant, although I’m not sure I’ll keep this up because I think I am best not fixating on them. I shall look into the diets, thank you x
hey, i feel your pain i really do my neuro said similar to me, everyone was leaning towards anti imflamatory disease but i kept saying it wasn’t i went totally blind in my left eye back in march 2020 and everyone i saw said my eye was healthy lol and nothing wrong with it. it’s slowly returned but not how it was lumber puncture inconclusive mri’s i had many then in november 2 lesions appeared on my brain and in march this year i was finally diagnosed with rrms and have just started tecfedera fingers crossed you get diagnosis soon i kmow what it’s like to waiting and waiting keep on at them and hopefully they will diagnose you soon good luck
Hi all, so i’m still here, in limbo land, and after requesting another neurologist consultation and MRI my sadness and frustration has been re-triggered. I’ve spent a year trying to “get on with things” and live with my frequent symptoms; for the past year i’ve done fairly well emotionally, but it’s hit me hard again. No new symptoms though so I suppose I should be pleased. But to hear the consultant say again that my brain resembles that of a 60 year old (im 36) but they don’t know what’s going on, is not fun.
I’m now waiting for another MRI but the neurologist said that even if there are new lesions, that this may still not lead to a diagnosis because it may just be to general deterioration as I haven’t got new symptoms.
Totally and utterly fed up of being in limbo land, trying to be pleased that I haven’t got a diagnosis and that symptoms haven’t worsened, but wanting a diagnosis at the same time - feeling like i’m going mad, that maybe i’m imagining my symptoms, feeling frustrated that it’s hard to explain to other people whats going on (when I drop a cup of tea, or fall up the stairs, or can’t get my words out), and feeling so alone with it all, and scared, so scared.
I know this (my emotional pain) will again pass and I will get back to where I was, while waiting to see if anything has changed on my MRI, but still, this is tough and I don’t know what to do.
One year later, a rollercoaster of emotions and yet no further forward … for you, and for me too. I feel your frustration and pain. I understand too how coming back into contact with the medical system and getting no further seems to trigger stronger emotions, greater frustration, anxiety, sadness each time. I agree, with no answers it is also difficult trying to explain to friends, family etc, and they may start to doubt you too, even as you start to doubt yourself. I’ve fallen out badly with my sister over this, we’re no longer talking. She doesn’t understand. Thinks it is all in my head. Yep, it is in my head - damage is clear on the MRI, but the MRI does not name the cause.
I’ve no answers, but here is a good place to vent our frustrations with people who understand. Well, no answers, except to make sure you make time to do things that you enjoy, to get back onto a more even emotional keel.
Just been turned down MS…lassitude and numbness and weakening legs some of my symptoms…spine stiffens…sensory issues…limbo is horrible…especially when the feeling is youll never get diagnosed …keep focussed somehow…hang on in there but i know its difficult…my neuro even made a small insulting remark it wasnt called for…he isnt the suffering one