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Help - diagnosed then undiagnosed????

Hi - i hope someone can help and offer some advice.

I was diagnosed with Optic Neuritis in Feb this year from which my eye is still recovering.

Since then I have had intermittent episodes of weakness in my right leg - the usual heaviness, pins and needles, numbness resulting in my having to drag my leg along. These episodes have never lasted longer than a couple of hours and have then recovered.

On wednesday, this changed, the whole leg episode started and didn’t end. I fell over twice and couldn’t weight bear. I have a tight band feeling around my middle which feels like wearing a pair of spanx without the benefit of a flat tummy too! I was admitted to hospital on thursday and put on IV Steroids where my neurologist said clinically there was no doubt I had MS as I met the criteria of the NICE guidelines.

So that was a kick in the stomach - then however - i had a MRI of the Brain and C-Spine which showed no lesions so he says it may not be MS and we have to wait and see.

Has anyone else had this experience - I just feel in limbo and don’t know what to do or where to go. I still can’t walk and just need to know I am not the only one!

xxx

Hi, When I was in hospital I was first diagnosed with CIS (clinically isolated syndrome) as it was my first episode with loss of feeling in my feet and other symptoms. I had a MRI of my brain and lumber puncture and both showed signs of inflammation. At the time I was told 95% chance I had MS and they advised me to wait on my next MRI as they wanted to be 100% sure before I was given the diagnosis of MS. I had another scan and then was diagnosed and its very common not to get a diagnosis of MS with your first episode. Your consultant with most likely do follow up check up to see if your symptoms change and how your recovering from this one. I did feel like I was in limbo until I had my follow ups so your not alone and im sure lots of other people with comments saying the same as some people have waited years before they been given a full diagnosis. Polly x

Hi,

I am in a very similar situation.

The first neuro I saw said he thought MS was very very unlikely, and that he was only authorising MRI ‘to put my mind at rest’. However, the MRI showed demyelination, so he recalled me, and said ‘definitely a mild form of ms’.

Next, I saw the MS specialist neuro, (who was really really nice) and he said it was not possible to diagnose MS from the one MRI; he told me most patients need more than 1 MRI in order to be sure damage has occured on multiple occasions. He therefore diagnosed me as having had a radiologically isolated incident. He then said he wanted me to have spine MRI done (previous mri was only of brain) as my symptoms and physical exam may point to lesions on spine, and if this is the case, MS diagnosis might be more likely (my first neuro refused to MRI my spine, as he said there was ‘no point’; you can imagine how frustrating that is - because if he had authorised it, we would have had results by now. grrr. but thats a different story altogether!)

So, in past 9 months I have been told firstly that there was a ‘99% certainty’ that I do not have MS; then I was told I “definitely” have a mild form of MS, but most recently have been told that told I ‘for now’ my diagnosis is not MS but CIS, and I am back in limbo land, awaiting more tests e.

The main lesson I have learned from my experience is that sometimes, when face-to-face with patients, doctors may sometimes say they think MS is ‘definite’; but that being told verbally that you ‘definitely’ have MS does not always actually translate into a formal diagnosis - in future, I personally will not consider myself properly diagnosed with anything until it is doccumented in my medical reports.

It sounds like in your case the doctor may possibly have jumped the gun by telling you ‘definite MS’ before waiting to see resuts of MRI scans. It is horrible to be told you definitey have a condition, and to have to come to terms with that, only to be told later on that it is not definite after all, and that you are back in limbo. I wish doctors would stop using terms like ‘definite ms’ until they are ‘definitely’ certain they have all the evidence they need to say those words. It causes a lot of confusion and distress.

So no - you are definitely not the only one in this situation.

hugs

You could ask for a lumbar puncture to help with diagnosis? I was told I had MS in hospital and then told CIS later as I had only had one episode, but I do have brain lesions. I have also read on here that it depends on the strength of the MRI machine as to whether it can pick everything up.

Hi I have been in your position, but I am back to dx of MS and on DMDs. After about 18 months of investigations I was diagnosed with MS after multiple MRI’s and positive LP. Then I was admitted to hospital after not being able to weight bear on my legs, to be seen by a different neuro who said he didn’t think it was MS I then had two more MRI’s that didn’t show any changes then I was moved to another hospital and they freaked me out by saying my issues were caused by discs in my neck and I would need op, to change there minds the next morning. I saw another neurologist who examined me and decided they would try steroids, things improved slightly then I was discharged from hospital not knowing whether I had MS or not. I then went to see a specialist MS neurologist who confirmed I had MS, he said my MRI’s weren’t shouting it out but all my symptoms and positive LP confirmed MS. He then started me on DMDs. I hope you aren’t in limbo for too long I know how it feels. Barney

I’m waiting to be diagnosed with something, have my follow up neuro apt this Wed. I had a follow up MRI scan 8 weeks ago, no new lesions but mild swelling on a few spinal lesions seen in my first scan taken in Feb this year. At first I was diagnosed with ‘possible RRMS’ in Feb. Then in August CIDS ‘clinically isolated demyelating syndrome’.

I feel like I am about 95-98% recovered, but last week had a little transient sensation of mild sunburnt back but thats now gone. I think that was related to stress. Have multiple lesions on brain, though these are periventricular lesions they are not dawson fingers (dawsons are typlical for MS). I also have no collosal involvement (common in MS). I do have involvement of brachium pontis (common/typical for MS). Have multiple lesions in spine including few in thoracic. I’m hoping that what I had was monophasic and possibly ADEM. I’ve never had a history of fatigue or other symptoms just very occasional sleep apnea at very stressful times.

Don’t think I would be prepared to start DMD’s until I have a second attack or new lesions are seen on a new scan. xx

thank you everyone - its so frustrating isn’t it - I know I many of you have been in limbo land so much longer than me - so I shouldn’t be complaining. I am now awaiting the LP, physio for my leg and results of a whole new load of blood tests so maybe will get some answers sooner rather than later.

I have read that 5% of people do have MS without lesions - anyone know anymore about that?

Love and hugs to you all out there - have a great sunday xxxx

thanks everyone - this limbo land is no fun and i have been in it nowhere near as long as most of you guys.

My next steps are to await the dreaded LP, get the results of a whole host of new blood tests they took yesterday and have physio on my leg. The IV steroids have now finished and my leg does now seem a little less heavy but still can’t weight bear or move it without intense concentration!!

My neuro still wants me to see the MS nurse - is this normal???

Hugs to everyone - thanks for being there

thanks everyone - this limbo land is no fun and i have been in it nowhere near as long as most of you guys.

My next steps are to await the dreaded LP, get the results of a whole host of new blood tests they took yesterday and have physio on my leg. The IV steroids have now finished and my leg does now seem a little less heavy but still can’t weight bear or move it without intense concentration!!

My neuro still wants me to see the MS nurse - is this normal???

Hugs to everyone - thanks for being there

Hi hun. Yeh, I`ve been tossed all around the houses with changes of diagnosis.

I was suspected of having PPMS for a few years, then it was 95% sure, for a lot of years, then suddenly it was changed to something else…HSP…for a year…another later PPMS was back in the frame, then finally in 2012 MS was ruled out for definite and SP is the prime suspect again.

All this happened over a period of 15 years and I saw 15 neuros!

Fun innit…not?

pollx

I’ve got an ms nurse for CIS. She is nice and I’d welcome any help on offer if I were you. I hope you get the physio you need. I am still waiting when I was first promised in August!

Puddinglover, your lucky to have an MS nurse for CIS. I asked for one but was told by the MS nurse no, I have to be fully diagnosed with MS before gettting support. The MS nurse mentioned something about it can be confusing for the patent if they are not diagnosed with MS and get MS nurse supprt? Budgets I guess?

When I was firstly diagnosed with CIS I was visited by the MS nurse in hospital and was given her details when I was discharged. I found it extremely helpful to know I had support from the nurse. It probably depends on hospitals budgets etc if they have a nurse available to support you. Polly x

Just read the NICE guidelines and was interested to see it says the diagnosis of ms is a clinical one and that it shouldn’t be just based on mri results Axx

everything is soooo complex isn’t it!!! there’s the NICE guidelines and the McDonalds criteria - depends which your neurologist prefers?

Will wait to see what the MS nurse has to say - am staying positive and praying for a quick recovery with my leg as need to get back to work to earn the pennies - hate being dependant on my family to do things for me - it’s so hard to admit that i can’t be supermum

So…what does ‘clinical diagnosis’ mean then? Tinkerbellanoodle (lovely name :smiley: ) I sincerely hope that you get clarification and the help that you need :heart:

hi Reikiblossom - thankyou.

A Clinical diagnosis means - a diagnosis made on the basis of knowledge obtained by medical history and physical examination alone, without benefit of laboratory tests or x-ray films

xxx

I think ‘clinical diagnosis’ does need to involves MRI.

Medical history alone rarely leads to diagnosis of MS, as many of the signs and symtoms (as reported by the patient or as evidenced in physical exam) can also occur in other conditions.

Symptoms and physical exam may point to possibility of MS, but most neuros will not confirm the diagnosis as ‘clinically definite’ unless there is radiological evidence (lesions on MRI).

Where the NICE guidelines state that that MS diagnosis be made ‘primarily on the basis of the history and examination’, the ‘examination’ does include MRI. The guidelines also state that ‘diagnosis is made on the basis of CNS lesions scattered in space and time’ (ie evidence on MRI). The patient’s history / symptoms / physical exams can help to support dissemination in time etc; I think this is why the guidelines advise that the MRI should not be used in isolation.

But the main tool used in the clinical diagnosis is usually the MRI.

[quote=“barney_owl”] Hi I have been in your position, but I am back to dx of MS and on DMDs. After about 18 months of investigations I was diagnosed with MS after multiple MRI’s and positive LP. Then I was admitted to hospital after not being able to weight bear on my legs, to be seen by a different neuro who said he didn’t think it was MS I then had two more MRI’s that didn’t show any changes then I was moved to another hospital and they freaked me out by saying my issues were caused by discs in my neck and I would need op, to change there minds the next morning. I saw another neurologist who examined me and decided they would try steroids, things improved slightly then I was discharged from hospital not knowing whether I had MS or not. I then went to see a specialist MS neurologist who confirmed I had MS, he said my MRI’s weren’t shouting it out but all my symptoms and positive LP confirmed MS. He then started me on DMDs. I hope you aren’t in limbo for too long I know how it feels. Barney [/quote] i have every damn symptom of childhood on.these bloody IDIOTS here in the USA treat poor people like me like crap.yes.i have a very good friend from yorkshire i skype with daily.i am left in limbo,and deteriorating fast now.6 months of being barely able to function,4 mri’s.two brain scans,two brain two spine and neck scans.i cannot eat very well,it’s too hard.lost 50 lbs since april,a lot of weight,too much.it all went really bad since last april.deteriorating fast here,eyesight,hand drop,horrible weakness,trouble walking,had to use a walker for awhile,ugh.losing control of alot of things.they put me in the madhouses a few times,horrible here.i have too long of a story to tell.i will have to tell in bits and pieces.too weak,and i lose focus.rambling,ranting,raving.i tried to kill myself saturday,the day after my bday.it did not work,obviously lol.another long story.thanks for being here,LOVE YOU ALL,oh,and i had to give my precious beautiful pomeranian away,too weak to care properly for her.it is killing me,always had dogs since i was a baby.when i was HOMELESS HERE TOO.i had one bridgette,a pekepom,lived to be 16 and a half,kelly,a cockapoo,14,henry, a heinz57,lol,15 yrs old.no,this is crap.oh god,i want another dog !!! oh why,why ??? oh,the pain,now physically too,24/7.narcotics worked,but now they all know i am an addict,so i can’t get them.i am all screwed up,mentally and physically now.things are scrambled,very strange.