HELP - Continuous abnormal MRI scans undiagnosed brain condition

[nicegirl27]

I am an irish girl and have had ongoing problems with my head since 2005. In the Summer of 2005, I was admitted to hospital with severe vertigo, I couldn't walk properly whatsoever. I had a CAT scan which came back as "Normal", but then had an MRI brain scan where a number of brain lesions appeared on the brain scan. The doctors then carried out a Lumper Puncture which came back as "Normal", and I also had  VWR scan which was also normal. After a number of weeks in hospital, the vertigo calmed down, and I was able to walk again.
The vertigo continued quite often for a number of months after that, and then gradually faded out, and I didn't get it as much. In 2006, I used to get vertigo every so often (Once every 2 months or so, nothing I couldn't handle). In 2007, from May onwards I was getting vertigo more often, it was lasting longer, and was becoming more severe over a number of months. I was again, admitted to hospital in September 2007, where a repeat MRI brain scan was carried out. Again the brain lesions were present and were in the exact same location in my brain. The doctors and neurologists again suspected MS, but could not give me a diagnosis. At this time, there was no Lumber Puncture done, and no VWR scan repeated because the lesions were found in the exact same place in my brain. The vertigo gradually decreased over a month or two months, and in October/November of 2007 I began to experience severe shots of pain down my legs (Both legs). The shots of pain increased over a number of months, and began more painful, and lasted longer. In March/April of 2008 for 6 to 7 weeks, I went through what my doctor described as a "Relapse". I experienced severe shots of pain down both my legs every 2 or 3 days with a constant pain in both my legs when this was taking place. Within the 6 to 7 week period, my right leg went weak three times (Where I would be walking along, and suddenly my right leg, my knee would fall, and my leg would drop every few steps). The two occasions I experienced my weak right leg, it lasted a day or so, and I was back to normal.  On the third occasion of my leg going weak, I couldn't walk properly, due to the weakness in my right leg, and went to hospital. The doctor examined me, and told me to rest my leg for a week. I did, and was out of my "Relapse" after this.
After this I was never experienced having a weak right leg like this, and have not had ongoing pain in my legs like that. I only get a sharp few shots of pain down my legs every so often, as well as my arms every so often.
I continue to suffer with vertigo every 6 or 7 weeks, where it can last a few hours, and usually ceases after a few hours rest. From June 2008, I have constant twitching all over my body (One of my feet would move, or twitch by itself, my toes, my hands, my fingers, my face particularly my right eye, and then within the muscles in my back, legs, arms) In June 2008, I had another MRI scan where again, the brain lesions were still present were unchanged, and in the same locations within my brain.
Last year (2009) in May, one evening, I felt that my mind had gone blank, and was walking around like a "Zombie" and had difficulty thinking, and was confused. That only lasted about 3 hours, and thought it was nothing. In September of 2009, one day, I felt I was loosing touch with reality, got confused, couldn't think properly, and didn't really know where I was. I knew something was wrong, was conscious, but couldn't control any of it. I went home from work, and the twitching increased on all parts of my body, and I got nauseous, and got sick. Then I started to have no control over my speech. There was "Garbled speech" coming out of my mouth, that I had no control over and continued for a number of hours, and during those few hours where my speech was "Garbled" one of my feet, one of my legs, my arms, or my hands were shaking almost constantly. After a few hours it all wore off, and I was back to normal. This occured again in late October, again in early November. And since early November of 2009, I have experienced these "Episodes" every 2 or 3 weeks till the present day (For the past 2 months)
I was admitted to hospital this week, following me having a very severe "Episode" the other day, and was brought to hospital. It was the most sever episode I experienced because it lasted about 6 hours, my head was jerking, and I was grinding my teeth alot, all of which I had no control over. I had my 4th MRI scan this week, and again the brain lesions were found, have not changed in size, and are still in the same locations in my brain. The doctors and neurologists I am dealing with still CANNOT GIVE ME A DIAGNOSIS, following all the symptoms I have experienced, and am continuing to experience, and after 4 abnormal MRI brain scans.
CAN SOMEONE PLEASE HELP ME WITH THIS, OFFER ME SOME ADVICE AS TO WHAT I SHOULD DO? SHOULD I TRY AND ORGANISE AN APPOINTMENT WITH A NEUROSURGEON, OR MAYBE EVEN CONSIDER BRAIN SURGERY? I am at my wits end, and this undiagnosed neurological illness I have is severely effecting my life, and I really really need a diagnosis. IF ANYONE CAN HELP ME, PLEASE PLEASE PLEASE EMAIL ME OR CONTACT ME. IF ANY NEUROLOGISTS ONLINE HERE CAN HELP ME, PLEASE PLEASE DO, THANKS

[jensequitur]

It's odd that in the MS capitol of the world, you show all the signs of MS, yet remain undiagnosed.  To me it sounds like you have more than two lesions, dissemination in space (symptoms in more than one area) and dissemination in time (more than one attack.)  This, according to the McDonald criteria, would lead a trained neurologist to diagnose you with MS.  The negative spinal tap is not conclusive to exclude MS from the diagnosis.

So I would talk to a different neurologist, and get a 2nd opinion.  Make sure you have all your MRI reports and other lab data.  You've already created a timeline - I would break it down by when each event happened, so that the neurologist can track your progress through time.

It sounds like you're experiencing seizures as well, which could be caused by the lesions.  I think there's a couple of people here that have had seizures, and have been diagnosed with MS.

We have a great resource here in medhelp - the health pages.  They're informative articles written by members of this forum, and answer a lot of questions you might have.  Here's the McDonald criteria explanation...

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36

[Lulu54]

Hi nicegirl and welcome to the forum here.  I hope you will stick around and continue to learn more about MS and see if what you learn really fits your symptoms.

I am not the medical guru around here - Quix is defintely the go-to person and I trust she will see your post.  However, I have to tell you that it may be very difficult for her to read.  The long block of text plays havoc with our eyes, so please try to make smaller sections/paragraphs.  Thanks.

Anyway, as I read your story something just doesn't fit, and I don't know what it is.  This is just a hunch on my part.  Many of the symptoms you describe can fit other diseases besides MS.  There are many mimics and they need to  be tested for as well - has this been done?

Were your MRI's done with contrast?  I am puzzled if you have had all of these symptoms and you feel you are getting worse, but your lesion load has not increased or changed appearance.  Have you had spinal scans done too?  I'm sorry if you mentioned it here and I didn't pick it up.

I am sorry that you continue to suffer  - we have several people here who spent years like you looking for answers.  

be well,
Lulu

[nicegirl27]

Thank you for your reply tartar. I have 5 lesions in my brain, primarily in the frontal lobes, and I know I have one in the perventricular region, they are small enough and haven't changed in 4 and a half years, although the symptoms I experience have changed since the lesions were first identified in 2005.
I really appreciate your reply, thank you

[tarter]

To: Nicegirl27

I am answering your post but can only relate to your symtoms there are other people here Qui and Lulu who will be able to offer you much more advise and info.
You could read the health page re brain scan.

The problems with vertigo,speech and weakness I can relate to you too sound has frightend has i was.

I thought I had a brain tumour or was having a stroke such was the severity of symtoms.

The good news is you havent got a tumour or had a stroke they would have seen evedence.
The scan you mention lesions how many? did they comment on their size shape?

Remember the symtoms are just had important as the lesions.
Getting a Neuro to diagnois can be a long haul I have had symtoms over three yrs and just recently had another scan.

You have to keep a journal and record events which it looks like you have been doing.
It can be a drawn out process of watch and wait.
I dont get so frieghtend now when I am in a flare I just wait for it to pass.

Do you have any other autoimmune problems like Raynauds which i have.

I am sure others will leave comments they have far more knowledge and advice but nice to talk with you try not to worry it can make symtoms worse.

Take Care tarter