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Rizzo or others could i have your opinion plz

Hi all. still un dx but report so far bilateral periventricular white matter changes with small new area of change around posterior aspect of left lateral ventricle. No enhancement with contrast. This was April.

Neuro rang today who referred me to QE for MS specialist who i’m not seeing until 16th Oct and said 2 new white spots since last MRI.

I had a spell for a few weeks of right leg weakness and tremors in right arm.

My neck and shoulder pain also started again for a few weeks.

Could these spots have caused this as i have been off work since january, tried for 3 weeks in may to

go back but dad had heart attack and i went downhill and don’t seem to have been right ever since.

Any opinions welcome

Sonia x

Hiya

I cant tell you anything medical wise but my neuro also sent me to the QE as they are the experts there,and can prescribe the DMDs.

So as there are new areas its best to go there so if you do qualify it can be started sooner rather than later.

I would think work should be your last worry at the moment and concentrate on your dad.

Take care. Nice to see another blackcountry lass on the boards,or are you a fully fleged Brummy?

Pip

Hi, how long have you been in limboland? I think it is good that you got the referral. Mid Oct isn`t so far away…just a few weeks.

My neuro referred me to an MS specialist in Leeds and he wouldn`t see me! Nice, eh?

Hope you get your dx soon and any meds that may help you.

luv POllx

Hi pip and thanks for the reply, Dad had a triple bypass at Coventry and is doing ok apart from other health issues and the fact he is 73.

I am a fully fledged Bummy through and through i just wonder if it is MS as the neuro at Heartlands wasn’t

confident either way as i have a rare blood disorder and had a stoke at 19 and 2 small ones since.

My mri summary in April says demyelination, small vessell ischeamic change, vasculitis and clinecal correlation is required .

Poll i have been in limbo since december 2011, not as long as some i know but with my rare blood and

previous history i’m chomping at the bit to get some answers. I go down to half pay 5 day’s before my

appointment and will also lose my working tax credit. With a 16yr old and 14yr old and after holding my

job down for 20yrs i’m starting to get very worried.

Thankyou both Sonia x

Hi Sonia,

It does sound rather likely that the new lesions caused the new symptoms, but I guess they are having to be careful about diagnosing you because of the complications :frowning:

It sounds like timing is an issue for you so maybe you could ask your GP to try and get you an earlier slot? Or maybe phone the appointments line and ask for any cancellation? Also, if this neuro is nice enough to call you at home, perhaps he might try and help?

Re finances: have you applied for DLA? It might help a bit?

Sorry I can’t really help much :frowning:

Karen x

Thanks for the reply, i keep ringing but no joy as yet. As for DLA i walked into dial a few weeks ago now

explained the situation and her reply was you are too mobile! I have asked neuro to send me a copy a the radiologists report which he will.

I will let you know what it say’s when i recieve it, hate waiting for letters it drives me mad lol.

Poll i missed a question off for you, why would the specialist not see you?

Thanks all Sonia x

Mobility isn’t as simple as being able to walk or not as far as DLA goes. It’s also about how far you can walk, the speed you walk at and if it causes you pain or discomfort. Worth having a look at the benefitsandwork website to see if you might qualify.

(When I first applied, I got high rate mobility because although I could walk pretty far, I had to keep stopping for a breather and was getting overtaken by OAPs!)

Kx

Thanks for that I will look into it. Could I also ask for an honest opinion off all of you? If my MRI done oct 11 until MRI done march showed changes and now I have 2 further spots, is it likely to be rrms or more aggressive ? Honesty even though it’s only an opinion won’t scare me i just like Different view points of what may be if it is MS. Thanks again Sonia x

Hi Sonia, the specialist didnt say why he wouldnt see me. I was gobsmacked when I rang the hospital to ask if I was on the appointment list and was told I`d been discharged without being seen!!

His action was to advise my local hospital neuro to do an LP. If that comes back negative for MS, then to send me for genetic testing. I dunno if I will go now. Just sooo fed up of it all.

luv Pollx

I can’t have the LP because of my blood disorder. Neuro was too worried as I’m on anticoagulants. Good job my kids keep me going especially my daughter. She is 14 with a great sense of humour and cheered me up by saying I Remind her of ET as they kept testing him and couldn’t work him out! Think my genetics must be well messed up, hope you get some answers Soon. Sonia x

I honestly can’t tell you, sorry. The increase in lesions certainly suggests that it might be highly active at the moment, but this might change; MS makes a habit of that kind of thing! (E.g. my MS was full on in 2010 and my neuro added the words “highly active?” to my RRMS diagnosis, but it calmed down during 2011 and has been good since - and I’m back to just plain old RRMS.)

Tbh, I really recommend just sitting back and waiting to see what the experts say. But it’s a great question to ask if the neuro does diagnose RRMS, because it might influence getting on DMDs straightaway and possibly the really effective ones (if that’s what you want of course).

Kx

Thank you for that, I had a conversation with my GP earlier but he tries not to say too much although he does give his honest opinion. This is not far from what I am expecting tbh. Thanks again Sonia x