"medicaly unexplained symptoms". please help.

New diagnosis and before diagnosis
1

hi all, saw my neuro yesterday to get results from latest mri and lp. the last time i saw him i had a tentative diagnosis, with talk of him putting me on tysabri. after a two and half hour wait from my appointment time, and the usual questions and prodding i was told that as the teats showed no change i have medically unexplained symtpoms. my symptoms are of ms, balance, numbness,brainfog etc. but there is no “clinical evidence” from mri and lp.

my hubby and i are so unsure of what to do next, he didnt say i definatly dont have ms, but will have to learn to manage my symptoms. it does seem i am definatly in a limbo land, but which land? has anyone else had this sort of explanation from a neuro? and what was ther next step, please help.

love lorraine x x x

2

Hi Lorraine

I’ve had documented symptoms for 1 and half years (though I think there were signs 6 months prior). My two MRI’s 6 months apart were exactly the same showing non-specific lesions. I changed neuro after this as my 1st one was terrible and offered no help - I was struggling going to work FT and shattered comÍng home. I saw a general neuro who thought ?MS and referred me to an MS specialist wo said that my hÍstory fitted in with two episodes of demylination but my MRI at this point wasn’t conclusive of MS. She offered me LP and EVP but as I was massively better at this poitn I held off with the view that if new symptoms developed I could go for the further tests particulalrly as a positive LP or EVP would not have given me medications (DMD) and i would only be probable MS.

I’ve had some old new symptoms creep back beginning of this year after havÍng 3 very good months.Have a review with a neuro sometime in april hopefully so will discuss the new things then (though I’m nowhere near as bad as I was last year this time).

So in my case I have been told possible MS and it’s a case of wait and watch for a obvious new episode, a change on MRI or something to indÍcate it’s not MS but something else.

HTH

Good luck with your journey

Reemz

X

3

Hi Lorraine, very sorry to hear you are stuck like this without a definite dx but with all the symptoms!

Unfortunately it is not uncommon. If there are no lesions showing on your MRI and if the LP was negative, they cannot really give a dx of MS.

However that doesn’t mean that there won’t be lesions showing in your next MRI. When does the neuro want to see you again? I’m assuming they will do another MRI in 6 months or a year and see if there’s anything showing, which there might be by then.

I wouldn’t say that you are really stuck in limboland, in terms of having no idea what is causing the symptoms. It is more a case of having ‘possible MS’ or ‘probable MS’… and it might help you to know that many people get into that category when they have clear MRI and LP.

In meantime, you need to concentrate on managing your symptoms. NOT having a firm dx doesn’t make the symptoms any better!!! And it might be a comfort that your neuro has acknowledged your symptoms and not ignored them or thought they were all in your head!

So for now, just think in terms of MS symptoms and learn ways to deal with them and manage your life with them. This forum is a great help for that and there are many on here without a firm dx.

Hope this helps hon,

Pat x

4

Hi, I know what limbo land is like. I`ve been there for a long time. My current diagnosis is;

spinal cord damage/cause unknown.

It could turn out to be genetic.

For 14 years I had test after test and none proved MS…or anything else.

Yet here I am, unable to walk, need help with toileting, showering and dressing.

The one good thing is that neuros say they will never discharge me, as they want to continue to monitor my progress of disability.

Welcome to our gang!

luv Pollx

5

It does sound a bit strange that he went from talking about Tysabri to saying you are a mystery. When you say no change to your MRI do you mean it was clear again or that the lesions were the same?

If it was the latter, then that’s why Tysabri has been ruled out (more lesions is one of the criteria for Tysabri), but why he wouldn’t give you a “possible/probable MS” diagnosis I don’t get. If it was the former, then the least he could do is send you for alternative tests and investigate other, non-MS, conditions because you must have had an abnormal clinical exam if he was talking about Tysabri.

Very confusing :frowning:

Maybe it will all become clearer when you get a copy of the follow up letter - it often does.

Karen x

6

I really feel for you. I was in limbo land for over two years and was finally diagnosed last week. It is a really difficult place to be in when you know you are not well but no one can give you a firm diagnosis. In my case I have a great neuro and a gp who was willing to listen to me. I too have had MRI s that showed some demyelination and was left in the position of wait and see what happens. Also my lumbar puncture was inconclusive (showing only 1 band). Finally at the end of last year I was unwell again with poor balance problems with my eyes numbness in my legs etc. I was referred back to neuro and although by the time I got to see him I was a bit better but he arranged another MRI which showed new lesions and the diagnosis Well after all that rambling guess I am trying to say is from my experience is to go back to your gp/neuro to try and get some more help/answers. This forum is fantastic and you are not alone. Xxx

7

thank you so much for your replies, all of you have helped me. i have decided to wait for the copy of the report he is going to write, but while i am waiting i am writing a list of questions that i would like answers to. i am aslo considering taking up his offer of a second opinion, but as the neuro is a proffessor im not sure another dr would go against his dx.

i do feel so scared for the future, as im sure most of you aslo do, how do you cope with this, i do try my hardest to think and act positive but with times like thisi feel absolutly helpless. my family are very supportive and my gp is very understanding and i dont want to be a burden to anyone. i am losing more and more independance and i dont like it one bit.

i know i am not alone and this forum is a lifeline of info and support so again thank you all.

love lorraine x x

8

I’ve been in limbo like you for several years. All the ms symptoms u can think of but no lesions so they all say not Ms. In the beginning they would last a few months and then go away for months. They are now here to stay and I don’t know what to do. Several er Drs said this sounds like ms. Nobody can diagnose me without lesions. It all started with electric shocks that went through my neck and spine. Then severe nausea and my feet would go numb during bike riding. 7 years I’ve been living with this and now it is here full time and severe. Don’t know what to do. I am empathetic to your frustrations

9

When I was waiting for diagnosis my GP mentioned Medically unexplained symptoms and said a lot of people had them and to me it sounded like a cop out. ( I like this GP but she can be so annoying, e.g. I went to see her after spending a week’s holiday in the hotel having been diagnosed with pneumonia and she says oh that’s just another name for a chest infection ). Anyway as far as I was concerned my symptoms were only unexplained because I hadn’t had enough testing to find out the cause.

When I eventually saw another neurologist who examined me and showed me my MRI and we talked about my symptoms which included depression and suicidal thoughts he said my symptoms were very real but I was suffering from Somatisation. I believe this is the same as FND but that Somatisation can refer to other types of symptoms like when unexplained tummy symptoms get called IBS.

Google Somatisation and it doesn’t get a mention on the NHS page only medically unexplained symptoms.

The neurologist suggested there was a psychological reason for my symptoms which has hit me hard but is helping me face up to difficult issues. My symptoms may never go but focusing on my other problems has stopped me obsessing about tremors and jerks. One of my first decisions was to stop writing my daily symptom diary which is a good one. Even writing this helps.

Anyway this is my take on this issue, thank you for listening and hope it helps.

Lesley

10

Hi, it must be very frustrating for you when you are given a diagnosis without a diagnosis. I dont think the consultants realise what they are asking of us when they say we have to go away and learn to manage the symptoms. Its alright for them. They are not having pain, fatigue, brain fog etc so cant possibly understand what we have to go through.

I went to my gp about 2 months ago because the vague symptoms that I had had for many years had always been explained away due to other conditions and diagnoses. Recently, I was experiencing quite debilitating muscle pain which seemed to start with my upper arm and pain in my hands and the gp noted it but didnt comment on it further. Since then, all my muscles hurt with a range of severity of pain, I have real fatigue which I have suffered from for a long time, I get wierd nervy pains and sensations in lots of my muscles, I have bowel and urinary problems, I have mental brain fog with problems with memory, recall, depression and problems with speech. I have occasionally been having difficulty swallowing with frequent bouts of swallowing the wrong way. I sometimes have vision problems but they come and go. Up until now, I have been diagnosed with IBS and was given medication which made things worse, urinary incontinence which i am soon to have an operation to rectify, manic depression, which is controlled by a shedload of medication (for years), chronic inflammation of the sacro-ileac joints in the pelvis (now on morphine for that) which is getting worse and fatigue for many years, which can be crippling and I have just been told that I already have a diagnosis of M.E., which I didnt know. So there is a lot going on. I now believe that my muscle problems extend to the workings of the bowel, bladder, abdomen, throat and the brain.

I am going to my doctor on friday this week (2 days time) and will be presenting my fears to him. I dont want to be scared because theres no point in putting myself through mental anxiety until its either confirmed or refuted. But there does seem to be an awful lot of similarities of my experience to the research I have done into the condition. I joined the forum to read other peoples experiences in case I have missed something crucial to MS that is not present in me.

I had an MRI a few weeks ago of my whole spine only because a specialist who dealt with me years ago was interested in a birth defect in my lower spinal cord (a psyrinx) and he wanted to do another MRI to see if there were any changes to its presentation. It may be my chance to get them to look for lesions and finally be on my way to an explanation for my symptoms and even a diagnosis.

While I wait for all that, I take morphine and dihydrocodiene to cope with the pain, I allow myself to abandon a normal sleep pattern and sleep when my body feels it needs it, even if that means me being enthusiastic at cleaning my kitchen at 3am. I just accept that i have bowel and bladder problems and treat accordingly and I am generally a very positive person, having a lifetime of mental health difficulties, so I know to give myself a break if im tired and depressed and get out of it by achieving things. Things like, Ive managed to make a cup of coffee even though it hurt my hands, or getting a load of washing into the machine (hanging the washed stuff up is my following achievement!). Even getting dressed can be a big achievement! But regular visits to the GP is essential as he can help suggest medications and therapies which might improve your life experience until such time as you get a diagnosis, even if this takes another few years. Hope this helps.

11

Hello

You do appear to have been suffering a lot, for many years now.

However, there is no single symptom that everyone with MS has. The only thing we all have is demyelinating lesions on the brain and/or the spine. Which may manifest in symptoms, or maybe not. You can only detect demyelinating lesions with MRI scans of the brain and spine. You’ve had a recent spinal MRI which would have shown any spinal lesions, but not necessarily any in the brain.

The big problem with MS is the fact that there are so many symptoms associated with it, the fact that many of these symptoms are also shared with other diagnoses, and of course, the fact that we do not share all the same symptoms. So person A might have optic neuritis, while person B has pins and needles in their feet and person C has cognitive problems. Persons A, B and C, might also all share a bladder problem, or a numb hands issue but not necessarily.

You present a challenge to the medical professionals of course, because you already have several diagnosed illnesses. It could be that one or more of your diagnoses are hiding the fact that there’s a neurological problem (not even necessarily MS). But it’s just as likely not. I would imagine that one of the many doctors you’ve seen over the years might have picked up any neurological disease.

What you might do is next time you see your GP, ask if there is any possibility that you actually have anything neurological wrong for which a referral to neurology might be appropriate.

But, I would suggest you stay away from Dr Google. He’s a certified quack and is not likely useful in helping you towards solving any health issues.

All the best.

Sue