Unexplained neurological symptoms

[Flowerpowerdk]

Hi everyone .

I am a 24 years old girl , who used to be fit and healthy until October last year. All of a sudden I started to have extreme headaches that didn't go away with regular painkillers (Panadol, Alvadon). I saw my GP who gave me some muscle relaxing medicine, but that didn't help either. At the end of november I started developing neurological symptoms like pins and needles everywhere, numbness in hands feet - right side of body. Particular more in right side of face including the nose. I really got scared of all these symptoms and I cried alot in that particular period when it all started.

My GP sent me for a CT scan which came back completely normal. Even her neurological examination of my body was normal. She then ordered a MRI of my brain and spinal cord along with a Lumbar puncture - both tests came back clear. Now, I am having these symptoms in five months and the doctors can't figure out what is wrong with me. I have also tried physiotherapy and chiropractors without any remarkable relief. I can not concentrate on anything because of these symptoms and I cry alot because of my situation. I don't go to university anymore due to this illness. I simply don't know what to do. My GP said that it might be MS, but  my neurologist says no because she says some of the tests would have been showing that if that was the case - So now im in this limboland where I can't figure out what to do? My health is decreasing day by day, and I don't have any motivation to live anymore.  I feel so sad, scared and depressed. What is happening to me? Is there anyone out there who might have a good advice?

- Faiza

[Flowerpowerdk]

Hey !

No I've never had those tests . She just examined me in her office . I had to do some different things like walk, sit and stand etc. And after these tests I was sent in for a MRI + Lumbar puncture . She called one week later and told me that all results came back clear, so you don't have to come back here anymore. For further investigation she told me I could go back to my local GP which I did. Now he is 100% sure, that I have MS, so he is basically waiting for the next 14 days where he said he will discuss my treatment for MS . When I mentioned that there is some criteria that needs to be looked at before diagnosing MS, he just said : yes but that does not apply on you still your symptoms are not improving :( Another thing here in Sweden is that we don't have any access to our medical history - We're just told what the results showed, but we are not able to get the actual rapports, and whats written in them .

So I feel like im stuck in this situation. Just because they can't place me in another box than the MS-Box, doesn't meant that I am just going to accepts this diagnosis, which is being made without any clinical evidence. But on the hand I don't know what to do , because whenever I argue that my tests were clean , and they should look for something else, they just say that if it was something else my symptoms would have disappeared a long time ago :(

I simply don't know what to do? My situation is getting worse day by day, since I don't have anyone near me who understands what I am going through. My family thinks that this whole condition is all in my head , and the doctor thinks I have MS - I am stucked in the middle and don't know what to do. I just want my normal life back , where I was happy and active physically . I feel like those days will never come again, since I've already been in this condition for almost 6 months now! And it has only improved 20% ..

[Bamagirl40]

Don't let them get by with that.  Keep getting other answers, second opinions so to speak.  I've been going on 11 years with them telling me nothing is there and then finding out that I have a laundry list of problems including, Arnold-Chiari Malformation Type 1 / Cervical Spina Bifida with hydrocephalus, but all could have been avoided if they would have just payed closer attention.  In my area, there are no true Chiari specialist, so I have to go to Baton Rouge, La.  After all of this time, I have obtained and kept records for most of the 11 years and on an MRI dated 3/2005, it was on there.  Why it went un-noticed until last year, is beyond me.  Now I have CSF blockage, which can cause paralysis if it gets worse.  I'm as mad as can be and I would obtain and keep a record (thoroughly) of all your medical information. You are your own advocate.  Research what is on your MRI or ask someone to explain what the big words on your MRI means.  Like. I had arachnoid cyst in the right CP angle measuring 16.8 mm x 10.5 mm.  That means that I have a cyst behind my right ear in my brain filled with CSF fluid.  No one told me about this and it was seen on an MRI 12/27/2012.  Why wasn't I told this.  Anything of that size and description seems like an important thing.  Well it is now.  I actually brought that up to another doctor for a second opinion and now they are freaking out over it.  Just train yourself and be aware.  I know that self-diagnosing is a problem by researching the Internet, so don't buy into the fake sites. www.mayoclinic.org is a good one, and www.asap.org is another good one.  

[flipper336]

Has your neurologist performed or ordered an EEG? If so what was the results and what type of EEG? I mean was it a short 30 minutes test performed in the office, a 48 hour take home test or a week long in hospital test.