Fed up and needing someone to listen

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.

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Hi Sarah
Welcome to the forum.

One of the (many!) frustrating things about waiting for a diagnosis of any kind, but particularly MS, is the long drawn out process and the length of time it can take. Often a dx of MS is arrived at by ruling other things out, rather than ruling MS in, if you see what I mean.

I would suggest keeping a diary of your symptoms and how you felt, so that when you have another appointment you have something to refer to (and it will help you to not forget something important!)

Until a definite dx is made, they can only treat individual symptoms, such as the Amytriptyline for pain as you’ve already mentioned. If you feel able to continue working, it might be best to do so, because having something else to focus on other than how crap we feel, can be good for us. If how you feel is seriously interfering with your ability to work, can you speak with your employer and ask for reduced hours or workload for a while, at least until you are feeling more able to manage things?

I hope you find some answers and some treatment soon. Do let us know how you get on and keep posting here if it helps.

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