Everybody has white spots on the brain

Question

That is what the neurologist told me today. He said everybody has spots on the brain, it was nothing and none of my symptoms point to MS.

So I wonder what is causing the heavy fatigue, pains, shooting electric pains, bad memory, word recall problems, odd sensations and so on. 

Then as I was leaving they said "so its nothing, but thats not to say it won't develop into something in the future".

Confused much?

pushingupdaisies · Answer

Head. Brick. Wall. Bang. Etc.

Sarahsmom46 · Answer

I ditto what Lu and the rest have said about you leaving. 

You are welcome to stay as long as you can stand us.  We are a good bunch and get rowdy from time-to-time, but we can still learn much from each other diagnosed and undiagnosed.  So, by all means, please stick around.

Julie

pushingupdaisies · Answer

Hi Lulu,

Thanks for the positive support and thanks to everyone else too. I thought I had some hope going today but now I am back at the beginning so really need to think carefully about my next step. I really, honestly do not know what to do next and need time to think it out. I might even choose to do nothing, I have really no idea yet.

Lulu54 · Answer

Ok, I am counting to 100 very slowly .... and again trying to breathe while I do so.... this just infuriates me.  And did so just from your title....

What is this neuro's problem and where did he get his diploma from?  The Cracker Jack box or some Popper?  Geeez.  No, everyone doesn't have white spots on their brains.  No, this is not normal.  And at your age it is even more not normal.


Do not, I repeat DO NOT let them make you feel like you are a pain.  This is your body and your life you are trying to figure out - you know something is wrong and it is the duty of these doctors to find out what that might be.  Do not feel like you are wrong or guilty of taking up too much time or resources.

Now you might not have MS, but you do have something - we know that between your sx's and your Brain spots.  It is up to the doctors to figure this out and give you an answer, and treatment if possible.  

This neuro is a waste and the first candidate this week for the Friday night roast...  

Please take a break - deep breath or whatever - and then jump back in to find another neurologist who actually stayed awake during class.

Your GP sent you on to the neuro and should understand when you present what happened and be willing to send you to another one.

As for leaving us - don't even kid yourself.  We take in everyone - even if you had been dx'd with warts we would want you to stick around.  You are one of us, even if you don't have a dx of MS.  

lots of hugs to you,
Lulu

pushingupdaisies · Answer

Well I have just been looking up second opinions on the NHS website and it says while we are not legally entitled to a second opinion, most GPs will not refuse one if a patient requests one. 

So I am going to leave it a little while and maybe write to my GP with a request for a second opinion and see how it goes.

steph74 · Answer

If you're truly not able to get a second opinion, push the current neuro on his lame excuses.  Tell him to explain why he ordered this test if he expected to find these "normal" changes that everyone has (and explain why everyone whose 37 doesn't have them!)  Just keep pressing, politely but firmly.  So don't push for a dx, per se, just ank for thorough explanations on these types of statements.  If he pushes back, just ask that he put it in writing.  (I don't know how the medical board works in the UK, but presumably they don't encourage dr's to tell pts that "everyone" has white matter lesions.)

Just my two cents (pence?)

Stephanie

jensequitur · Answer

This is not a members only club!  The fact is that you're experiencing neurological symptoms.  Or something which resembles neuro symptoms.  Whether you have MS or not, the treatment remains the same - and that's something you can definitely get help with on this forum.  I would also hang out on the neurology forum, although it's not as active.

I'll go and find the thread "Lies my Neuro told Me" as it's relevant to this topic.  White matter lesions in the brain are not normal.  It's possible to have small ischemic changes at an advanced age, like maybe over 60, but you're only 37.  A prime age for being diagnosed with MS.  

I would also seek a second opinion - but I see by your member popup that you're in the UK.  That's unfortunate.  I seem to remember that NHS won't let you get referred to another neuro - once you've been seen, that's it.  The UK is also backwards when it comes to MS diagnosis and treatment - which is a bit odd, considering they have more people with MS than other parts of the world.

Essentially you're in limbo - like many other people here on this forum.  Don't feel alone!  And always feel free to ask anything.

steph74 · Answer

YES! I have been undx for 8 years. I've been here for the last 1.5 years. The diagnostic journey for MS is often long. Sometimes it ends up with a different dx, sometimes with none, but this group is very welcoming of undx'ed members.

pushingupdaisies · Answer

So in light of what happened today, is it still okay for me to post?  I really do not know if I am coming or going on this one. I was not wanting a diagnosis of MS I was wanting a diagnosis of something - something to tell me what was going on, but now I have nothing. My GP has done her best, there is nothing left now and I think they will try and scratch it down to stress or something even though I have no stresses in my life.

mackemuk · Answer

Hi, I Would Defo Go Back To Your GP And Demand A Second opinion This Neuro Sounds A Right Clown He Is Just After An Easy Life!!!
Take Care Of Yourself
Regards Joe.

twopack · Answer

I think I read this once before.  If I did, it was on the extensive list of falsehoods included under the topic "Lies my Neuro Told Me".  And anyway, how come if everyone has them, so many people seeking a diagnosis for their symptoms are told they have NONE?

per Patsy Cline and Willie Nelson:  CRAZY

Mary

pushingupdaisies · Answer

Hi Steph, 

I was going to ask him "if everyone had them why was I referred in the first place?" but by that point I lost my bottle.

steph74 · Answer

Ha Ha!! I am proof positive that not "everyone" has spots on the brain...  I have sx classic of MS and no visible lesions on the brain or the spine.  

You could ask the doctor why, if everyone has them, do they bother to look for them with a very expensive test?  After that, I'd find a new doctor (hopefully you'll be able to).  

Stephanie

pushingupdaisies · Answer

Hi Redflame, 

I really feel quite lost and back at the beginning again now. I don't want to go back to the doctors for a second opinion because I feel like I am being a pain.

I have to take the view that I don't have MS but something is causing my problems and now I simply have no explanation at all.

RedFlame · Answer

What you describe sounds very familiar.  I never heard the "...everyone has white spots...".  But I was told by one neurologist that" I didn't have MS becuase I was too old".

Later, I called and asked her to put that in writing.  She left a message that "I can't do that becuase it is very probable that you will develop something soon" ?!?!

Take heart, most of us here have been through numerous doctors who were unable to help us.  And it does get very confusing.  What I did was continue to press forward with different doctors and different tests.  It's so incredibly hard.

I don't know how things work there in the U.K. as far as the referral process but I would press for a second opinion and ask for specific tests. 

I'm sorry you are having to go through this in order to be diagnosed and treated.  It's just reprehensible.  

We will be here to help you in your journey.

Red