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Abnormal brain, spine and obands - is there still hope??

Hi guys,

Its been a while since I posted and Im feeling a little low today because Ive had the sharp end of my neurologists secretarys tongue… :frowning:

I had a nasty turn of transverse myelitis back in March and was then told that I had 80% chance of it being MS due to the fact that I had an abnormal brain and spinal scan…

However, I was then told that I didn’t have obands in my csf which made me so happy because I had read some information to say that no obands could indicate a slower disease progression… not sure if thats true or not… The neurologist certainly didnt seem that excited about it

Well time went on and she then decided to use the new ief technique with higher sensitivity to look for obands and lo and behold i do actually have them!! So I felt as though my last bit of hope that this could all be just a bad dream was taken away from me… sob…

I am now waiting for the results of my latest brain scan so that they can give me a clinically definite diagnosis. So my question is guys - do you think it would be quite unlikely for me NOT to have MS based on the fact that I had transverse myelitis, abnornal brain and scan (only very small lesions though) AND + for obands???

I feel like Im going crazy with worry… I have two small children and I just want to know one way or the other… I totally understand that this is a very long process but it will be 5 weeks tomorrow since my last brain scan and although the neurologist said that it would take around 2 weeks she still hasnt written to me. I called her secretary today (I do call once a week now which im sure can get very irritating although I am always super polite) and she said that the neurologist was getting angry with my calls! if that is the case then I wish she hadnt set my expectations at 2 weeks in the first place!

When she first dropped the bomb in hospital that I had 80% chance of MS she was so cold about it…I asked her if I would die because of it (was the first thought that sprang to mind with small children!!) and she said “Well, anyone with a neurological problem will die a little earlier than others” - but I think that is utter rubbish!! and totally wrong to have said to someone in my position!! I have really investigated MS and I have read that a large majority of people live totally fulfilling lives with maybe only a year or two shortened life span!! She was completely unemotional and offered me absolutely no support or comfort. I really dont feel as though I am bonding with her now at - and to hear she is angry at my calling her secretary now and again to chase vital brain scan results to get my clinically definate diagnosis. I feel very low…

I don’t know enough to comment on the medical side of things but i really do want to comment on the total lack of empathy you have been shown from the “professionals” i sometimes think they can forget we are real people with lives that could be turned upside down with this. I am also in limbo land and have been since mid June ( not very long compared to most people on here) but i also feel like you and need to know so i can start to get my head round things. I am sorry but the weekly phonecall by you is not exactly causing distress to the neuro or their secretary but the lack of consideration by them is causing YOU distress. My opinion is its your life, your health and your illness ask away, hope you get your answers very soon, take care

Hello there

I don’t know much about the medical side , but there is certainly hope ! You have been treated awfully . I don’t see how the neuro is upset by the calls . I have had similar issues with rheumatology secretaries and I have found that bring nicey nice didn’t work , so I patronised them back . I suspect you have tried your best . It is unacceptable how you have been treated , hood you get answers . Sure there’s some great neuros out there but another member wrote a joke and I liked it . What’s the difference between God and a neuro ? God doesn’t think he’s a neuro ! Haha. Take care x

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If you can I would ring again and use a method I got taught in a counselling course called the broken record . It is about being assertive. Don’t take any guilt trips just question over and over why it hasn’t been done . Say I have been told two weeks , where’s my letter then ?(she responds ) so whys that not been done then ?( she responds ) so what you going to do about that then? Just keep at her , at the very least it will annoy her !

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If you can I would ring again and use a method I got taught in a counselling course called the broken record . It is about being assertive. Don’t take any guilt trips just question over and over why it hasn’t been done . Say I have been told two weeks , where’s my letter then ?(she responds ) so whys that not been done then ?( she responds ) so what you going to do about that then? Just keep at her , at the very least it will annoy her !

Thank you all so so much for taking the time to reply - you have already made me feel so much better. A little compassion goes such a long way.

You are absolutely right with your advice too - I wont be made to feel bad by chasing my results. Afterall, the sooner I can get treatment the sooner I can put off more relapses.

I appreciate you both taking the time to send your thoughts. The people on this forum are some of the kindest and nicest people you could hope to meet

Kx

Summer is a bad time to be waiting for MRI results (been there). You can easily get a situation where the radiologist is on holiday, and then her secretary is on holiday and then your neurologist is on holiday and they they’re all moving offices… You get the picture.

But five weeks is a long time. There is absolutely nothing wrong with a polite weekly phone call. If the sec is being pissy, it’s probably because she’s behind on her work and feeling over-sensitive and got-at and she’s taking it out on you… Whatever the exact reason, it is quite wrong to be criticizing you for their slow response time. Pay no attention. As others have said, keep your cool and calmly keep asking.

Your neurologist doesn’t exactly sound like Dr Finlay, but neurologists aren’t always. They tend to be factual rather than emotional in their style, so when you ask them about impact on life-expectancy they will give you a factual answer instead of the simple reassurance that might have been more helpful.

It is a pity that you don’t feel quite in tune with her. But that isn’t the end of the world. It is good if we feel a connection to our medical advisors, but it isn’t strictly necessary. There is a great deal that they can do for us even if we don’t feel quite on the same wavelength.

Alison

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Hi kiera, sounds like we’re on a similar road and I posted similar question few weeks ago. Ive had one big episode in apr may, lesions found on mri and obands found on lp. I eventually found out some of my results from going to my gp and asking him to look up my records but of course only neuro can give diagnosis. Had been waiting ages for neuro appt since lp at end jun but was lucky and got cancellation appt this week. Who knows how much longer it wiuld have taken if I hadn’t kept phoning every couple of weeks so don’t feel bad about having to keep phoning secretaries-it seems to be the only way. anyway, wanted to tell u what neuro said - I don’t meet criteria for ms diagnosis as ive only had one episode even tho massive no of symptoms and couldn’t work for 8 wks. He gave me 70% chance of having another episode within 5 yrs.the bit I thiught youd be interested in is ghat he said 60 ou of the 70 was based on me having large lesion on mri, and he added another 10% for the obands fro the lp, of course this may be very specific to me but I was surprised thst the obands didn’t seem to sway things much. I’m trying to look at this as actually been given 30% it might never happen again:-) and 5 yrs is a long time, fingers crossed. Will have another mri in 6 mths and see what happens then. oh last thing, my neuro wasn’t the warmest person, have been told by my cousin whose a dr that theyre known as the most arrogant of all the specialties. Think is just yheir way of getting through appts as quickly as possible but doesn’t help. Hope things go ok for u. Try to take ur mind off things if u can and ill try do the same. froo

Hiya, I can completely understand how you feel. I had TM Dx in March 2012 told by Neurologist the same day he also thought it was MS. I did go on to have confirmed Dx of RRMS in June 2014, after a further relapse, but that is not the case for everyone having TM. Having MS is not all gloom and doom, you can still have a great life, my boys were 10 and 8 when I had the TM, it was a very worrying time and I also wanted to know as soon as possible, however whilst you would have thought I would have got used to the idea, I still had a very difficult few months after. I have accepted it now. But I have to say it felt abit like being on a roller coaster, did my family feel my pain! I wasn’t the nicest person to live with! I had rebif for a year, recently started Tecfidera, and that seems to be working out ok, now I am over the initial side effects tablets a breeze after all those injections. You need to be kind to yourself, rest when you need to, I accept my life has changed but I try to focus on positives, at least once confirmed, if that is the case you can look into dmds etc. Is there a posibility of changing Neurologist? Wishing you all the very best for the future, Sarah x