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Have I been diagnosed?!

Hi, I have recently experienced my second episode since 2011, and have had another MRI done.Within the referral letter to the MS specialist, the neurologist has written -

The first MRI showed two focal areas of high signal, and the second MRI showed further demyelinating plaques (with no enhancement) which may represent MS.

The neurologist called me with the news of the abnormal MRI results and explained she was referrring me to the MS specialist as MS was suspected.

I have now had my appointment letter to attend the MS neurologist and I was just wondering what other people think about this. Do you think this is a definite diagnosis?

This is difficult I would say yes but not being a neurologist I really can’t say, have you had any more tests blood lumber puncture, has your first neurologist done a full health review and history. I am undiagnosed as yet but I do have demyelinating like legions in my brain.i think that your first neurologist would or has said yes as it is only a neurologist who can say that you have MS. Maybe she is putting you forward for a second opinion to make sure. It sucks when you don’t know for sure. How long before you get an appointment with the MS specialist any idea. I have never had a phone call to tell me anything that was wrong with me on the phone, when I got my letter explaining what they had found on my MRI, I phoned up my GP and got zip he said that the doctor was still looking and can’t say what it was, fat lot of good that was but that was before I went on this site I have learnt a lot on this site. The people here know a lot more about MS because they know first hand what it’s like unlike me, I have just started the journey and still have a long way to go. It sounds like you are nearly at the end of the journey, just a few more opinions and you get your diagnosis, a long time coming. I have only been on it for it since I saw the neurologist in October for the first time. It was in November when I got the letter and December when I received my new appointment in April. As I have said I am a newbie on this… Good luck. Kay

Yes, I had a full health review, and neurological exam before the latest MRI. The phone call is a bit of a blur to be honest! my appt with the MS specialist is in May, so not too long to wait.

Hi StSian

I am perhaps in a similar boat to you.

I was first referred to a general neurologist, he sent me for a brain scan following a spine scan I had already had and had showed demylination. At my follow up with him he said the brain scan was clear and I was diagnosed with a CIS, he then referred me on to an MS specialist just to be certain.

We arrived at the MS specialist appt, a fabulous doctor but whom both myself and my husband felt from the way he was talking that he thought I had MS and in fact the brain scan was not clear! A lumbar puncture was arranged which showed positive O bands, another indication of disease activity. From that appt I now have an MS nurse who will be highly surprised if MS is not confirmed when I go back on April 5 to see neuro. At the last appt with the nurse I was sent away with 2 drugs to research in case I am offered them in April.

I havent had a definate diagnosis yet but am expecting it in April, the waiting is killing me and I really do think it will be a relief so I can move on.

I hope everything works out for you, as you say May is not to long to wait.

Hello

I don’t think it’s a cast iron definitive diagnosis, but it certainly looks like it’s heading that way.

‘Areas of high signal’, and ‘demyelinating plaques’, tend to be markers for MS, but ‘no enhancement’ seems to indicate the plaques/lesions are historical as opposed to being due to current inflammation.

(This is by no means an expert opinion, I know only what I have learned over the years of living with MS, research and experience from here and other MS sites.)

I think you’ll be waiting until May for either a definitive diagnosis or further tests prior to anything definite being declared. Possibly lumbar puncture and/or evoked potentials tests would give the neurologist more helpful information.

Best of luck. Feel free to keep coming on here and asking for help or just fellow feeling from people who understand what kind of worrying limbo state you are presently living in.

Sue

Thank you so much. I am expecting a definite diagnosis in May, and to be honest, it will be a relief to actually have an answer to my symptoms.