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am waiting for a diagnosis

Hi all I really need help. Basically l was having numbness and tremors for many years. I thought nothing of it and put it down to stress. Ot was only after I was unable to walk unaided that I sought advice. After many trips to my gp and numerous blood tests I was referred to a neuro. He was very dismissive, but sent me for an mri. The mri show ed inflammation. He said probably ms. He offered me a lp but said it wouldn’t affect my diagnosis. I had a negative Lp. He said that because of this I didn’t have ms. Anyway a year later I have an appointment with a neuro again, my symptoms arw now a lot worse. How do I get my new consultant to take me serioly

Hi galway girl, welcome to the forum.

I hope the Neurologist you see this time, will know is job. Even if you do not have ms, there does seem to be something neurological going on. I am afraid reaching a diagnosis for neuro type conditions, in many cases, can take a long time.

You know your own body the best, so persevere until you get answers.

Good luck xx

Hi Galway Girl,

I don’t think it’s that your first consultant “didn’t take you seriously”. Obviously, he knows not being able to walk isn’t normal, and did at first believe you had MS. However, the negative lumbar puncture then cast serious doubt on this, and would not have been what he was expecting!

There are very strict criteria around making an MS diagnosis, and most (all?) neuros are very reluctant to do it in the face of mixed evidence - which is what you have. It is possible to have MS but still have a normal lumbar puncture - however, it is quite unusual, and certainly enough to undermine confidence that an MS diagnosis can safely be made. It would certainly trigger suspicion that his first instinct may have been wrong.

So usually, such delays in diagnosis are nothing to with the patient not being taken seriously, and everything to do with MS being very hard to diagnose, and consultants not wanting to get it wrong.

I don’t think you have to do anything to persuade your new consultant to take you seriously, as that’s not the issue - it’s purely one of evidence. He may well want a new MRI and/or new lumbar puncture. Depending on the outcome of those, he may feel he has enough evidence to make a formal diagnosis - or he may not. They won’t do it unless they are sure.

If you weren’t being taken seriously, I’m sure you’d have been discharged altogether, and wouldn’t have a new neuro appointment. Neuro appointments are in short supply, and not handed out unless it’s fairly apparent something’s wrong. If they thought your problem was nothing, you wouldn’t have got one.

Tina

Hi thanks for your replies. With my first neuro he said that I could go for an lp, but the result wouldn’t affect my treatment. I opted to go and when I saw the neuro again he said there was nothing he could do and discharged me! He told me my symptoms could be brought on by stress. At my initial visit with him he actually said that he would send me for an mri but he didn’t think there was much point, and he didn’t think he would see me again. As an ex healthcare professional I do respect the job that medics do however in this instance I felt he didn’t listen. I also know that I may not have ms, but I know that something is wrong and its not stress.

Hi again

I am a qualified nurse, no longer practising. I am sure you will agree, the majority of consultants are good at what they do but there are the ones who just fall short of the mark.

Just keep pushing for answers until you are satisfied.

Good luck

Thank you, I totally agree with you. I have been a nurse and a midwife and I am fairly used to consultant speak. However this guy must have been the exception to the rule. How far in to the "journey are you? Much thanks Anna

Hi Anna

I was diagnosed last August with primary progressive ms.

I come on this thread to offer support…where I can.

Mostly I spend my time on everyday living.

I hope you do not have ms but you do need answers. Like Tina said above, you can have a negative lumbar puncture but still have ms.

There are people on here who are still waiting for a diagnosis after a couple of years…at least I’m pretty sure it’s that long but my memory is so unreliable. Just one of a list of reasons why I don’t nurse anymore.

Take care

Noreen x

Gosh sorry!! Had to check with husband. Diagnosed August 2013…blimey…see what I mean.

Dizzy is my middle name

Blossom doesnt time fly by when your having fun he he. xx

Are you in the UK?

The criteria for diagnosing MS is set down in stone lol…

I found this information from this society…

The McDonald criteria are the criteria required for a diagnosis. Although the McDonald criteria say it is possible to clinically diagnose MS without any tests, they recommend that investigations are carried out so test results can provide further evidence of MS.

Diagnosis of relapsing remitting MS rests on: two relapses, separated by more than 30 days, OR one relapse and an MRI scan three months later that shows new lesions.

To determine if a person has secondary progressive MS, they must have: had relapses in the past, shown a steady increase in disability for at least six months, whether or not they continue to have relapses.

Primary progressive MS is diagnosed if there have been no previous relapses and if there is: a progression of disability over at least a year, an MRI scan that shows lesions consistent with MS, evidence of MS detected by examining the spinal fluid collected during a lumbar puncture (this is the only situation where a lumbar puncture is needed to diagnose MS).

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I was told that having a lumbur puncture could simply muddy waters, and i know quite a few people with diagnosis of RRMS who have never had a LP and some who have but they were still negative but were diagnosed with MS because all the other criteria was met.

I do think it is possible to have MS for many many years and never know you have it, and then suddenly you get a kick in the butt and it makes you have to see a doctor…by then usually a few stages have been skipped over.

I was offered I.V. sterioids in hospital then the neuro realised i had skipped a few stages lol, and was fone pas the reapsig stage, even then it still took more years to get diagnosed.

Even with positive stuff on my test results.

IF you had lesion on your spine enough for the neuro to call MS then he must have seen something, perhaps it is more to do with Primary Care restraints then his…if that makes sense. I sometimes wonder if they are given a quota of diagnosis lol…and once you get over that you have to keep all these poor people in limbo land until they tick another one of those burger criteria lol…

Gosh i do sound cynical…hey i am cynical lol…I have been supporting so many people over the years now so ill yet not diagnosed with anything…because they just seem to not fit a certain puzzle or criteria.

So my answer to you Galway girl is fight for the right to be diagnosed and taken seriously. x Look up other diseases that have lesions on spine it isnt always MS…Lymes/lupus/ others have them…

Keep strong but go get em…xxx

Yes, such fun lol I grab it where I can