New lad not Un Dx

[Georgeios]

Hey people, ive been watching this forum for a while now, looking for answers haha.

June this year i started having problems seing from my left eye and bad headaches..
went to my doc who sent me to get eyes checked, the optition noticed that i had a swelling at the back of my eye, so the next day i was off to Opthamoligists who said yes we beleve you have opticnurosis and req'd an MRI, and made appointment for me to go see the Nuroligist, i had my MRI it showed two leasions on my left lobe and another on the thing that controls my Temprature.. Nuroligist took blood and done a LP, they all came back clear (after 6 weeks) however during all this time i started to go down hill.

Head got worse,
sight came and went with my left eye being sore all the time and sore to move (really sore!!) also at nights when i was trying to get to sleep and i moved my eyes it would flash as if someone was shining a torch over it...
My left arm would go dead an felt really heavy.. this bugged me
Id get grumpy for no reason
I get really tired at anytime of the day
my necks sore and stiff
I feel dizzy walking down halls or in shop isles
My Mouth goes numb sometimes
My fingers wont work (I normaly type 60 WPM but now im lucky to get 20)
I get Shocks running down my back, top of my bum and inside my legs when i bend forward, or sit forward.
I can no longer park straight haha!!
I just feel vacant all the time and switch off for no reasons when somone talking to me.
My back kills its just in the middle bit but its sore like

I dont take time off work as im in the Forces and dont like skiving haha

My Neuro said its not MS because the LP came back clear, and the leasions are in the Gray parts where MS normally affects the White bits.... Pass

She does not want to blind proscribe me sterods as she beleves they can mask things, i am getting MRI again end of the year but in the mean time, ive to do nothing but keep notes......

any ideas or anyone in the same boat as me??

[Quixotic1]

Yes!  A huge welcome to the forum!  I am so sorry that you have gotten the answers from your neuro that you have.

First off, there is NO need to have a positive LP in order to be diagnosed with MS.  the test that is run on the spinal fluid requires a good amount of training to run and interpret.  So, even though the studies say that 90%- to 95% of people with MS have a positive spinal tap, in real life the number is lower.

The criteria for diagnosing MS do not even require that an LP be done, and certainly do NOT say that the LP has to be positive!  So your neurologist is wrong about that.

Now, the issue of gray matter lesions is getting a lot of research lately.  It is completely clear that people with MS frequently have a lot of gray matter disease.  I don't think it is 100%, but it is VERY common.  So that says your neurologist is a little behind on reading what is being written about MS lesions.  We can try to find you some articles to print out for your doctor about gray matter lesions and MS.

I hope this does not delay your diagnosis long.  Clearly your doctor thinks you have MS, but is made hesitant by the gray matter thing and the negative LP.  You might ask for a second opinion, while at the same time collecting some of the data that shows that gray matter lesions are important and frequent and that the LP does not need to be positive.

I hope you stay with us and let us know how you are faring and become our friend.

Quix

[Georgeios]

hey thanks everyone for getting back to me, ive loads to read up on now. I fell in the shower today washing my Sweed, opened my eyes and wam im on the floor!! my Girlfriend came waddling in worried to pick me up, i just couldnt get my bearings, but after a couple of mins i was ok, just had a laugh and a cup of tea and start the week off to a bang!!

[Lulu54]

hi george and welcome to this forum! I'm glad you decided to jump in and talk with us.  There are lots of experts here and EVERYONE is willing to share an opinion or guess :-)

A house, a baby and an undiagnosed neurological disease - what a great year, huh?   Well two out of three ain't bad!  Congratulations on the first two.

the health pages at the top right side of this page contain lots of helpful information, including one that explains how you can have MS and a clean MRI.  Read that before your next doctor appointment, so you can present that argument reasonably well,

I can relate to your symptoms, especially feeling vacant at times. That is one of my biggest complaints - I can see their lips moving and hear their voices but my brain at times just doesn't get it.  Very frustrating for me and them !!

I hope you will stick around and join in our conversations!

My best to you, Lulu

[Wobbly]

Hi there and welcome to the forum... congrats on baby coming and congrats on finding our forum...good job.  you sound like you have been through some of the testing and have certain results...but since the LP is neg..your Neuro doesn't want to Dx?  That happens and I don't think it should but who am I... ummm

don't give up and keep a record of you symptoms...do a "timeline" of you symptoms and ask for copies of your MRIs CD and reports etc...and then you will have them when needed...

hangin there and talk with your Dr ...see another Neuro if needed...but ask for a second, third opinion if necessary... if you don't have you results for you LP etc...ask for copies..OK..

welcome again and take care
wobbly
undx

[saveone]

Hi, welcome and congrats on the pending arrival of the little one.  That took three tries to get it right, then I had to stop and fix this sentence.  LOL....anyways we are glad to have you. Here is a link that will show you some of the other posts we have had on gray matter and ms.

http://www.medhelp.org/search?query=ms+and+gray+matter

If the link gets removed just go to the top of the page and enter ms and gray matter in the search box.

I give up now, typing today is to difficult.  I think my hands are connected to some other person's brain.

Hope to see you around.

[doni54]

Hi, and welcome to the forum, we're glad you're here!!  Since you've been lurking awhile, you probably know that no question goes unanswered and sometimes we kinda go off with humor that is unexpected.

Have you checked out the Health Pages?  You can access them by clicking on the Health Page icon in the upper right hand corner of the page.  They are so informative and help answer lots of questions and even help you to know what questions to ask.

I am undx and what we call on this forum a limbolander...hahaha  There are many of us here and we call ourselves a cyber family.  You are a welcomed member now, so anything you need to talk about we will try to respond and help you out.

There are some on here that were really fortunate to have neuros who didn't go strickly by the standard MS criteria to get their dx.  There are actually neuros who take in to account the symptoms, whether or not the MRIs or LPs show anything.

Congrats on the new house and the pending arrival of a little one!!  How exciting!!  And yes, just hang out with us and vent anytime you want to, it does help to have others experiencing the same things you are.  Everyone here understands and supports each other and to me, this is the best forum in the whole world, and the people here are second to none!!!!

doni

[Georgeios]

Thanks for getting back, yes im in the UK, and a member or the Royal Air Force, this alone has ment i seem to be getting seen quicker i think, My normal doc has said he wants me seen again by someone as they have given him nothing to work on as im full of symtoms but no Dx, he doesnt want to start giving me somthing and fine the Neuro had other plans, Communications are very slow between them, i beleve my Local Doc is doing the best he can but my Neuro seems to busy, the Shocks have only just started (i thought they may have been due to the LP as its all around the area and the shocks seem to be starting just below the area too)

I have been in limbo for a while and have been watching the forum here with out logging on since june/july and i have noticed that everyone is welcome and theres never a daft question to ask, i logged on and registered now because ive gotten to the point where so many people seem to have the same symptoms.

I am not a worryer and never get stressed out (even having just bought a house and my Lass is due our first baby in Feb), but i think to keep me calm and stress free i needed to vent here haha, thank you for reading.

[biowham]

Wow. I have NO idea where that "ca" I typed after your name came from.

I have the same problem if I move my head from side to side too fast or turn around too quickly. Utter and complete dizziness and imbalance. Don't know if it's my ears or my brain.

Bio

[biowham]

Hi, George--
ca
Welcome to the forum. The people here are GREAT and will help you in many ways.

As many here will likely pop on to tell you, your doctor is flat out incorrect to say that a negative LP means no MS. I'm sure Quix or somebody else knowledgeable n also address the "white bits" vs "grey bits" observations. But the bottom line is, you've got something that is powerfully affecting your quality of life and your doctor(s) need to do something to address that now, not months from now. You've got optic neuritis and Lhermittes and again, there are people who will tell you about this in more detail, but that first thing alone is a genuine "sign" (not just a subjective symptom). Sounds like you have a lesion in your hypothalamus, and THAT IS NOT SOMETHING TO FOOL AROUND WITH.

You must be in the UK. I know it's hard to get past the limitations of the health system requirements there. Is there no way to see another doctor, get a second opinion?

Bio

[Georgeios]

Oh and im no good at spelling, i get loads of other things going wrong, to many to list in one sitting but looking on here, i get at least one of everyones symptoms lol.

My lastest one that i havent mentioned is if i move my head to an exstream, i.e up down far over to the left and right i get really really dizzy!! not good when your girlfriends about a foot smaller and likes hugs, shes getting used to having to hold me up or straight when were hugging....