Last reply 2 weeks ago
Off work sick

Hiya everyone 🙂 I have a lumber MRI this Thurs and I have been having symptoms again since May 2020. My symptoms started in May 2019 numb feet, pins and needles, ataxia and weakness on left side. I have brain fog, cant concentrate and struggle finding the right words. I was seen in Nov 19 by a neurologist who was condescending and rude. She practically said she would do a head MRI but wouldnt find anything and the way I was feeling was all in my head! My results found a Pineal Cystic tumor (benign – apparently). No further MRIs required, not even a follow up to discuss the findings.
I have continued to have symptoms, I have had periods of time with nothing, but then again in May 2020 my leg weakness and arm weakness returned, I have fatigue, my arms are aching and both hands are weak, I’ve dropped stuff and cant grip anything as before.
I was so tired my body felt ‘irritated’ and unsettled last night, achy and restless. Part of me obviously doesn’t want them to find anything on scan, but the part of me does as I really feel I need an explanation. This has been dragging g me down and Drs are doing their best but all my tests come back clear, so is it all just in my head??

Thanks for reading 🙂

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dvtrv
2 months ago

@dortyblonde

Hi,

These are certainly symptoms similar to symptoms other who are diagnosed with MS have reported having.
As I’m sure you are aware it may not necessarily be MS.

I had a lumber end of 2010 which did determine my MS.

There will be others that will respond to you on here.

Uncertainty isn’t a great place to be.

In this day and age, unfortunately we have to ask ask ask, it’s just the way it is.

I’ve checked but where on earth are your doctors/specialists located? No need to be rude, YOU ARE NOT FEELING WELL!!
How ruddy annoying of them.

Good luck


simone2
2 months ago

Don’t think it is all in your head it’s not! some doctors can be so arrogant my old neuro specialist was awful to me just because I wouldn’t take the drugs he wanted me too , so don’t listen to any negative talk, hope you find out what’s wrong soon.


dvtrv
2 months ago

@dortyblonde

“Amendment”

I haven’t checked


itsmewithms
2 months ago

I often refer people to the videos put out by Dr Boster as he covers so many topics and in a manner that they can be understood by a patient vs just by doctors. He has several good ones on MRIs and reading them. I found the ones on MRIs very enlightening. My MS team kept stressing about “Brain lesions”, which I have, but that concern me less than my spinal lesions. I think my brain has rewired where it could but I think that is harder for my spinal ones…I have a lesion exactly where he says in one of his videos could result in foot drop and that is my major issue. I don’t know why neuros aren’t on high alert for the obvious symptom for where a lesion is and urging you to get PT for it or any other physical help you need. I think dealing with manageable foot drop for years resulted in issues in my gait that imbalanced my system wearing out my right hip to the point it had to be replaced and I’ve never really fully recovered from that. So- trying to stay in front of disability is important. Hopefully you are not dismissed this time. I’ll give a link to one of Dr Boster’s MRI videos but the more you know and ask questions maybe the more they will listen to you? https://www.youtube.com/watch?v=w02_oCm5G0I&t=533s

Good luck!


stumbler
2 months ago

@doryblonde , good luck with your MRI on Thursday. I must admit that I am confused when someone, exhibiting symptoms which maybe MS, is only given an initial brain MS. MS attacks the Central Nervous System (CNS), so both the brain and spinal cord can display lesions. so, the brain and full spine should be scanned to be comprehensive.

The attitude of our Neuro is also important. We want to be listened to and feel that we are being take seriously.

However, it is our prerogative to request a second opinion, if we are not happy. Residing in London can mean that you may be spoiled for choice, dependent on your exact location. So, this may be a future option, if you are still unhappy with your present Neuro.

Do take note of some of the comments above. Neurological problems can be caused/exacerbated by stress.

Whilst you do not have a diagnosis of MS, there’s no reason why your GP can’t prescribe something for for some of your symptoms. The following article may be useful in this respect:-

https://www.mstrust.org.uk/a-z/altered-sensations


cameron
2 months ago

As @stumbler says, a second opinion is an option. London has world-class centres of excellence for MS – it doesn’t sound as though you’re at one of them! When I got a second opinion and was referred to one of the London centres, quite honestly it changed my world. Not only the treatment, but the attitude. Early on, I was told ‘Don’t worry, we’ll look after you’. After months of agonising uncertainty and being fobbed off, that came as the most wonderful relief. I actually blame my early, major attack on the neurologist I saw first. 48 hours after that appointment, which was as unhelpful and scary as it could get, I went into a relapse that cost me the use of my leg. You don’t have to put up with second best..xx..


doryblonde
2 weeks ago

Thank you so much @stumbler, @cameron, @itsmewithms and @dvtrv and @simone2 you have all made v valid points. I am so sorry for the late reply I haven’t been on here for quite some time. I have now been seen by a private neurologist who wants to do a full body MRI and I have an appt for Evoked Potential tests next week, I’m nervous but also so pleased to be getting somewhere! He was v understanding and I have been ref back to NHS for tests as I really cant afford an £2,000 MRI – I thank god for our NHS baring in mindnive worked for them most of my life and it’s a shame I’ve had to go private to get anywhere with it all. Will pop back on here a lil sooner nxt time.

Thanks again everyone

Doryblonde 😉

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