Very very confusing-symptoms and no medical answers

[Smilerooo]

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 :)
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. :)
Thank you to everyone who reads this
And I would really appreciate anything, anything at all :)
Thanks Kara

[Smilerooo]

Thanks ren :) I had a mri yesterday with and without contrast and it was negative :( but it wasn't looked at by a neuro it was looked at by someone from radiology who were short staffed that day and rushing, so that concerns me
also  i have had no spinal mri? And I don't know what strength the mri scanner was so could it possibly not have picked it up?
Thank you all for your replies

[rendean]

HI Kara,

I am sorry to hear about everything you are going through!! Kyle was very correct in saying that you need a new neurologist- one that specializes in MS!

Although we cannot provide any diagnoses on this forum, Kyle was right about his remarks that your symptoms are suggestive of MS although there many diseases that mimic MS. A good Ms neuro will test for all the mimics and help you get a diagnosis and treatment for your symptoms.

I wish you much luck in your search for answers as I wnet for 4 years in search of a diagnosis. As for your MRI , make sure it is done with MS protocol and with and without contrast.

We have Health Pages located to the right of this column that are filled with much information and on a variety of topics. Please take the time to read these as they are solid information!

Please feel free to ask any questions you may have at any time. That is what we are here for!

Warmly,
Ren

[Smilerooo]

I am going to see my neuro on Tuesday hopefully as they are back from holidays then. I am just wanting some ammunition to take with me so I am not dismissed again like all the other times before :) thank you for your replies so far :)

[Smilerooo]

Thank you very much I will look now :)

[immisceo]

I'm not sure the protocol for getting second or third opinions in the UK, but it does sound like you need one rather badly. I don't think you've been served very well by the professionals you've seen thus far.

In the meantime, a lot of very good information can be found in the community's Health Pages. http://www.medhelp.org/health_pages/list?cid=36 (also found on the right side of your screen).

[Smilerooo]

Thank you so much for your reply it means a lot :)
I have previously been to LGI hospital in leeds but my admittance yesterday was Airedale in Keighley (where I am from). I am feeling sad with the neurologists that I am seeing at the moment  as I feel like I am a total hypochondriac and I just wish someone would let me know what is happening I have spent almost 4 years questioning and I have got the point where I am getting so in need of answers. :) can you change neuros just like that?
Thanks again Kyle:)

[kwarendorf]

Hi Kara,

Sorry you're having a rough time of it. From what I read, it sounds like maybe a fresh set of eyes on you and your symptoms is in order.

I'm not sure I've ever heard of anyone having to wait 2 months for biopsy results. I'm also not sure I would trust a neurologist that rules out MS without seeing you i9n person. MS is first and foremost a clinical diagnosis. MRI's, LP's blood tests are all done to support clinical (in person physical exam) findings.

Much of what you describe might be caused by MS. The period of time between your "bouts", the reappearance of old symptoms and the presence of new ones is classic.

Are you near a major metropolitan area or a big teaching hospital?

Kyle