The Results Are In and not what I Expected...

New diagnosis and before diagnosis
1

I will not go through the whole story or I will be here forever.

I had the lumbar puncture.Oh boy never again.Twice the needle was put into my spine twice it hurt.Third time lucky.Two days later in hospital unable to eat,drink,screaming in pain.Two morphine injections and drip and some injection into my arm to stop me being sick.

I then felt a lot better.

I went for the results this week on wed Dr Hind again was not pleasant.

Let’s cut a long story short.I have it in black and white he said I had Demyelination multiple lesions etc.

Well he was rather unpleasant as he read every symptoms I had and said no cure and no medication can be given to help.Then onto the next symptom and repeated the word again no cure no medication and no help.Thats not his exact words but you get the idea and of course there was a long list.

Now although I am ill I am still a positive personal,I sickening to my friends as I am happy.I am and was NOT depressed before I was given any message,nor depressed during trying to go through the process.I maybe a little stressed.

He then told me there was NOTHING wrong with me.It was all in my head.That I needed a social worker,I need a physio for my mobility and a shrink as it’s all in my own head and not real.

Mentioned I suffer migraine headache.

So I said to him,so what your saying is I am so depressed I convinced myself I am terribly ill causing all these symptoms.He replied yes.

He gave me this link to read. Www.neurosymptoms.organisations to read.

There is more to the whole story but I don’t have the mind seat to explain it all.

To have all these symptoms and for it to manifest its self and Dr Hinds words and suggestions I must of been darn manic depressants for many many years.Considering get I am not depressed but a little stressed bow did my own brain invent the pain,spasms and so on.

Yes I read the link and it’s says they are real symptoms BUT only in my own head.

Shocking.

Now it appears no help will be given.I’ve been labled an attention seeker with several depression and mentally made up my symptoms and my brain convinced my body they are real.

2

That is .ORG not organisation…

3

Oh hun this sounds like the sort of thing my partner was told on Tuesday, we too were told it’s all in his head, he’s apparently depressed (he wasn’t but sure as hell is now!) and above all stressed (mainly put down to having children according to the neuro). We too were given that website to look at which kinda helped but still leaves us in limbo as to what to do next or where to go. We’re going back to his GP this coming week to find out what they can do or help with as he now feels even worse mentally than he has done in the past 4 months of us not knowing anything …

Hope you get some help and answers soon xxx

4

Thankyou Spikecat.

Same here I was not depressed but now I do feel so low.

A friend told me her son was having sever headaches so bad he curled up on the floor screaming in agony,he was other wise fit and healthy.He paid for a MRI scan and got his results from the same neuro he told him he had depression.He tried many different antidepressants and NONE worked.

He was NOT depressed but now he is,he lost his job,wife,kids and his home and now back home with his mother.And still getting these headaches.

The neuro back tracked and now decided I have Migraines and depression.I am very shocked,he has no bedside manner as it is.

There is multitude of lessions in my brain.

So now I am branded a faker,liar and a manic depressant who had made HERSELF ill,its all in my own head and there is NOTHING wrong with me at all.

What am I supposed to say to a shrink?

If I say I am not depressed will they write down in denial?

I am disgusted.

And now no were to turn.Am I going to be given some high dose antidepressant that will make me brain dead?

If I dont take them will I be reported as a manic depressant who could harm herself or her child?

Yes sounds over the top BUT I have to think what the???

I have to wait for the neuro letter to arrive at my GP office,so was told to keep ringing the office until the letter arrives,like the syco I am to keep ringing a GP office.Then ask for an appointment which is a 3 week waiting list.So a month or more waiting to be told here is some meds your depressed,get yourself a social worker or we will.I am being rather flippent and sarcastic.

There feels as if there is NOTHING I can do about this,the GP I am sure will side with the neuro and I am in the poop.

5

No amount of functional symptoms can cause lesions. Depression also does not cause lesions. Migraine can cause lesions and, while they can be confused with MS lesions, I believe that they are more likely to look like infarcts than demyelination. So, if your neuro told you that you had multiple demyelinating lesions, there is no way that they can easily be dismissed as due to migraine, depression or functional disorder.

You say you have it in black and white about the lesions. Exactly what did it say?

Btw, anti-depressants can be used as a very effective preventative med for migraine. I don’t know about dosage though.

Karen x

6

It says multiple high signal lesions.

Mainly in frontal lobes and a single lessons in the corpus callosum.

This report suggests a diagnosis of Demyelination.

7

I asked my doctor what this mental and she said it suggests MS.

The link he gave me points to me being a nut job that I am so mentally ill that I made nearly every symptom up in my head.

I certainly do not want to be ill like this.I want it all to stop.

I have it in black and white.

Now he back tracked and said migraine and it’s all in my head.

I do not know what to do.I feel let down.

8

One letter as in short version says that the team looked at the scans again and it states some of the lession are not typical of Demyelination and to check for vascular factors.Doctor checked me and found no factors.

9

Multiple high signal lesions doesn’t really say anything about cause - could be anything. Lesions in the corpus callosum are often associated with MS, but it would be very unusual for MS to present with mostly frontal lobe lesions.

Who said the demyelination bit? Was it in the original report or did the neuro add it?

I suspect it might be helpful to get a copy of the original radiologist’s report. It may give you sufficient grounds for a second opinion.

Kx

10

The neurologist put it in his original letter to my gp.

That is all taken from the letter he sent gp including demelyniation.That first bit is the report.

I’ve got the copies of his letters sent to my gp.

11

I may need to ask for the radio report.

I am not depressed so there is an issue there and I have been dismissed as a manicsto depressant.

I’ve not seen the radiographers report at all.

12

Sorry rizzo my eyesight and skills are bad.

It says shows multiple high signal lesions in the white matter in the frontal lobes and parietal lobes and single lesion in the corpus callosum.This suggests a dx of demyelination.

This was nero report to my doctor I’ve not seen radiographqs report.

What should I do.

13

I think you need to get a copy of the original radiologist’s report, not just the neuro’s interpretation of it. Depending on what it says (and I would hope that it says more than you’ve been told), it may be worthwhile getting a second opinion on your MRI scans. The crucial thing will be finding out if the lesions are consistent with migraine.

Ultimately though, there is little you can do without your GP’s support. He/she needs to be prepared to refer you to a new neuro and/or for a new MRI scan and/or a second opinion on your MRI, etc.

So, perhaps the most important thing to do right now is to see your GP and get him/her on your side. Maybe ask about them getting a copy of the radiology report? (Probably quicker if they do it than you do it.)

Kx

14

All I really want to know am I a manic depressant and it’s all in my own head?

I would rather it not be MS and hoped it wasn’t.

BUT I refuse to agree with its all in my own head and there is nothing wrong with me.

My support worker can help me I am sure.

So am I as mad as a hatter?

15

If I was you I would contact PALS for advice and demand a second opinion.

16

What I know of manic depression / bipolar disorder comes from having relatives with it. Until about 10 minutes ago, I would have said that it doesn’t cause brain lesions, but I thought I’d better double check that before I posted. It turns out that it can. It also turns out that I was wrong to say that depression doesn’t cause lesions - apparently it can too. (Or rather, some people with bipolar disorder and some people with depression have lesions - I don’t know enough to know what came first.)

This neuro has left you with more questions than answers - and done it in an unsupportive and unhelpful way :frowning:

All you actually know is that you have lesions and unexplained symptoms. Your lesions may be due to migraine. They may be something to do with a mood disorder. They may be demyelination. They may be something else entirely. Whatever they are, you need to see a consultant who can give you the right diagnosis and support you in managing your symptoms. The first step is seeing your GP. The second step may be getting a copy of the radiologist’s report. If you are worried about the bipolar thing, then ask your GP to refer you to a psychiatrist. They may tell you that you don’t have anything of the sort, but if you do, they really can help - I have relatives who prove this.

Kx

17

Thanks Karen.

There is in no way. I am manic depressant or bi polar.

I see the positive side of many things.If I loose a tenner and found a pound I see the positive.

I don’t stress over bills and money and I certainly never stress over Christmas.I see it all over Facebook and I think it’s rather funny how they run around like headless chickens.

There is no one in my family that has either condition.

I am crazy but in the funny mad way…

I will see my GP hopefully my support worker will be able to come with me.

He didn’t have any bedside manner.Possible something has caused this illness but it certainly is not some mental health issues of that. I am sure.

18

I’m not sure if this will help but before I was diagnosed with RRMS my initial MRI showed multiple high signal lesions in the white matter, mainly in the front of my brain. The first neurologist I saw was dismissive and said definitely not MS, end of story, come back in six months, you’ll probably be better then.

I then got some advice and looked on here and got a referral to Dr Fathers in Musgrove Park Hospital. He’s the clinical lead for MS. Much more professional, organised a lumber puncture and two months later I got a diagnosis. So it was worth getting a second opinion for me. Try looking on this website for a MS specialist near to you and ask your GP for a referral for a second opinion.

19

Thanks lindy.

I will be looking for a second opinion,how ever my LP was clear.

I am waiting for the letter from the neuro to arrive at my GP then I will make an appointment.

GP is not happy with the DX.

I need and want advice from my GP before going forward.

Let’s wait and see what his letter contains first. My GP said she cannot do anything until she gets his letter. Then I will be requesting the MRI results.

Gosh so many go through this process and struggle.

I certainly do NOT want to have MS,I would rather be fit and healthy. I was in hope they would say this is the problem here is a pill your cured.

Charlie,x

20

Hi Charlie x you’ll get there - keep at it xxxxjenxxxx