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LP, MRI and brain biopsy such confusion

Hello all, Long and complex question so bare with me please!! in 2010 I became ill (I was23), the right side of my face went numb and a strange dripping water feeling ran down the side of my cheek, this quickly progressed and my balance began to take a turn for the worse. I got sent home from the doctors numerous times. I felt continually exhausted, my eyes began to go crosseyed and I developed nastgama and double vision . My speech slurred, I had to wear an eye patch and use a walking stick to help me get around, i looked like a drunk pirate. I also suffered tremors I my hands and sharp head pains. My bowels seemed to stop functioning for prolonged periods of time and I relied heavily on the horrid movicol. My life took a back wards step massively,I lost all dependency. I was admitted to hospital a underwent mri scans, lumber punctures and blood tests. Bloods camelback normal as did the lp. The mri showed a large lesion on my brain stem. the Nero thought this was ms and after a treatment of steroids and a long recovery life started getting back to some kind of normality. I then had a phone call from LGI hospital who asked me to come over immediately, later that evening I was told that the latest MRI had show a increase in size of my brain stem leasion and it was now actually a inoperable aggressive brain tumour. A brain biopsy was preformed and after 2 months of waiting for results, we got a phone call saying there was no signs of a tumour or ms!!! doctors just simply stated brain inflammation with no other explanations:( Over the past 3 years I have made a almost full recovery even to the point where I ran the worlds biggest obstacle course in May with my identical twin (20) miles. I spent 2 years in college and now run a business with my mum :slight_smile: Last month I noticed I was extremely fatigued and unbalanced and my swallowing was becoming a issue, I have gone down hill from there, my back has been in total agony most of the day even when resting, my left hand sometimes feels tingles and my top lip keeps on going numb. My vision sometimes goes foggy and my mental capacity is frustrating me as I am getting words muddled or can’t think of what I was thinking, my co-ordination tests are terrible, I’m very wobbly!i have had headaches and yesterday I was admitted to hospital , I have had 13 bloods taken and they are all ok. I had a brain mri and that was negative although I did not have a spine mri, should that of been done? docs rang a nurologist as there wasn’t one at my hospital and they said don’t bother with lp as nothing has shown up on mri??? They then discharged me with painkillers and nothing else. My question to anyone is please help!!! Advice,information anything would be amazing to hear, I am 26 and have no idea what is happening to me I am very scared and have no information, apart from what I read which is half useful hart scary as he’ll. :slight_smile: Thank you to everyone who reads this And I would really appreciate anything, anything at all :slight_smile: Thanks Kara

Dear Kara I hope today greats you feeling slightly better. I have been recently diagnosed with ms and am still trying to get used to my diagnosis. I am so sorry in the way you have been treated by hospitals/drs with being fobbed off. I can not give any advice as I have not been treated in anyway like yourself. I am sure there are plenty of people on this forum who have been treated in the same way as you and I hope they will be following on after me to give you some advice. Everyone on this forum has been wonderful to me so I am sure they will offer their advice shortly. I hope you get some answers soon. Love Karen xxx

How awful for you Kara :frowning:

I’m so sorry that I can’t offer advice but I truly hope you get answers soon

hugs

Sonia x

So sorry to hear of your difficulties. I’m undiagnosed and have yet to see a neuro. My advice would be to try and get a second opinion.

Hugs and luck

Tsuki xx

What a terrible time you have had. It is so frustrating when you feel that no one is listening. Did they say whether the lesion was till showing on your MRI scan? I would agree with with Tsuki, go back to your gp and ask for a second opinion. These symptoms you are suffering are debilitating enough, without being fobbed off. You need some answers and fast! Good luck x

First off wow thank you all so much for your replies it means so much having people that understand, I now feel so not alone knowing people are going through the same things :slight_smile: Secondly my lesion dose still show up on mri scans, dose that mean anything n particular??? And with regards to a second opinion I am hopping to see a nurologist with my dad next Tuesday so fingers crossed? I am hopefully but still very fearfull that I will be dismissed like all the other times before :frowning: Anyway yey I am feeling brighter today ( think it is from all your encouraging replies :slight_smile: ) Thanks again Kara xxx

Hi Kara . firstly you sound like you have been through hel and secondly you are not alone here…I am pleased you are seeking a second opinion re a neuro and have your dad to go with you…makes a big difference… If the lesion is still there it really should not be ignored and your symptoms need investigation and fingers. crossed the neuro will be thorough…I had a LP when in hospital after only a few days of being there but then didn’t MRI my brain till just over a month later…both were clear… I think a spine MRI with contrast would be helpful considering your current symptoms…and if. toning else they have a base line to work from…and to exclude any orthopedic/ structural probs and check from a neuro aspect that all is ok…different neuros have different ways of doing things re tests… I think it’s is awful the hospital discharged you with painkillers and no follow up …doesn’t sound actually like you were well enough to go home unless someone can be with you all he time etc…even so…they could have kept you in to monitor you…even though the food is pants and the care standards are appalling…in my exp anyway… really hoping you get some answers soon and also be aware that neuros don’t have all the answers…and they don’t like it when you don’t fit into a known category based on tests…but being thorough is not unrealistic and if this is done then other avenues need to be explored… try not to be scared…don’t read loads on the net…you need someone to put all this in perspective for you…personally as a patient …and also perhaps look at getting your eyes checked at optitions …did they check your eyes in hospital? this lesion needs to be explained and if it could be causing or contributing to some or all of your symptoms…I don’t know about lesions on the brain stem but they can cause some specific probs…I don’t think a phone call from the hospital to a neuro is acceptable…firstly he not it examine you…and most medical people would not agree with this kind of action…perhaps the hospital just wanted some kind of neuro input…but it’s. no substitute for actually being seen…by a specialist…and I suspect they called the neuro to cover themselves more than anything else!! sorry if that’s sceptical lol try and rest…relax and stay positive … em

Thank you so much em, and no my eyes were not checked properly, regarding my 1 leasion already existing, apparently it has shrunk and not inflamed for 2 years now, it is just scar tissue, this is why I don’t understand the flare up of new symptoms??? It is very frustrating as I just called the neuros secretary and I don’t think I will be seen for a few weeks! This is a illness where patience is a virtue… Unfortunately I was born one of the most impatient people ever, so I’m finding it rather difficult hahaha :slight_smile: it’s ok tho I have died my hair bright orange to cheer my self up! I may not feel brighter but I can defo look it :smiley: