CBD diagnosis--what should we ask the neuro?

[LostinHeadSpace]

Hi all,

We're seeing the specialist tomorrow about a possible diagnosis of CBD for my husband, from the first neuro. He's already had a CT scan, an MRI, the arm-zapping test of electrical impulses. We're aware that CBD is only definitely diagnosed after death. But what questions should we be asking at our first visit with the Parkinson's/Movement Disorder Neuro?

Thanks in advance.

[Kevin_1]

Hi LostinHeadSpace

First of all welcome to the forum. Sorry you guy's are having to deal with this.

They're pretty good at diagnosing it now.

I don't know what stage you are at symptom wise.

If you knew nothing at all I would suggest the following (However you probably know quite a bit by now - so just pick out the useful stuff).

First off I would read this before the appointment:

nhs.uk/conditions/corticoba...

This will leave you with some questions of concern.

So:

Hear what he has to say and get him to clarify anything that your not sure about. Remember every case is different and so he will be able to give a more person centered information.

Ask what he will be able to do in terms of controlling symptoms.

Ask for advice regarding Care Pathways - This is (U.K.) terminology for what routes the care will have to follow as the illness develops.

All this assumes thay don't cover all of the bases - sometimes they are superb and it is a case of just letting them lead you through it.

I do hope this helps a little.

What country are you in - knowing that helps folk here to be a little more specific with information.

Wishing you both the best

And please don't forget - there are many good times yet to come for sharing love and good experiences. A diagnosis is not the end of that.

Wishing you both the best.

Kevin

[raincitygirl]

Hello Lost, and Welcome;

Sorry you are facing possible cbd, but if so, you are in the best site possible. I'm on a plane running out of battery but just quickly, I'd ask how to tell psp from cbd, how to tell cbd from Lewey Body Dementia, how to, and who will prescribe, treatment of symptoms.

Im a cbd spouse... More later!! Take heart - were here for you!

Anne G.

[LostinHeadSpace]

Kevin and Anne,

Thanks much for the info! It's so much to take in at once. This neuro has done extensive work with CBD, and thinks that it's equally likely that it's regular Parkinson's as CBD (or the other things like it). The first neuro thought it was more likely that it was CBD, but she's less experienced in it.

I can't wrap my head around finding ourselves in a situation where Parkinson's could be the good diagnosis?! But we have grade school kids, and so even the hope of long-term Parkinson's is enough hope for today.

[Aprilfool20]

Hi Lostinheadspace -do you have a name?

I was diagnosed last June by one consultant with CBD and just told to look it up on the internet. Hence I found this site which is sooo good! He wanted me to try Levedopa to see if there was any improvement as CBD doesn’t usually respond very well. Looking at the side effects I declined.

I had a review in December with a different consultant and he referred me for a Dat scan. Following the results of that he has now diagnosed mild Parkinsons and does not think at this stage drug therapy is necessary. Because of the slow progression of these diseases in the initial stages it really is a waiting game.

I would add that following a heart attack July 2015 I was put on various drugs including Atorvasatin to lower cholesterol level though attack was nothing to do with that. Since coming off this drug my head has cleared and I don’t feel so ‘zombified’. I say this as you might want to ask about the effects of any medication your husband might be on .

I am in the UK and we have a local support group that we have just started going to and I hope to get in touch with the Parkinsons’ one -covering both bases!

All for now and best wishes

Jayne

[raincitygirl]

Hello Lost,

How did your consultation go? Anything become more clear?

Thinking of you!

Anne G.

[LostinHeadSpace]

Thanks for the replies! I wrote back the night we got back from the neuro, but for some reason, it didn't actually post. This second-opinion turns out to have extensive experience with CBD. He says that it's equally likely it's regular Parkinson's or CBD, whereas the first neuro (not a CBD specialist, but the local one in our network) was leaning toward CBD. I have been asking sooooooo many questions of both of them, and researching my head off. This second neuro wants another MRI of the frontal lobe and a levodopa trial. He also seemed to think it didn't make much difference if it's CBD vs. Lewy body because the treatment is the same for either. . does that ring true to what you have learned?

This is early onset. We have young kids. We felt ecstatic to have regular Parkinson's back as a possibility, because the timelines for CBD looked really scary. I can't believe that in a three-week period we've gone from no idea about any of this to thinking Parkinson's is a good option!

[raincitygirl in reply to LostinHeadSpace]

I haven't heard of treatment for LBD, but I've been told and have read everywhere that there are no treatments for CBD. LBD appears to have more certainty of dementia developing. CBD may or may not have dementia. My husband (CBD) has cognitive impairment, which has increased over the past 5 years, but no dementia. Cognitive impairment we can live with!!

I agree that Parkinson's sounds better than all of the above! I hope that is "all" it is for you in the long run. I found good information on the Brain Support Network. Robin Riddle who I believe founded that organization, posts here.

Hang in there - Keep in touch; we're here.

Anne G.

[LostinHeadSpace]

Actually, it's been less than two weeks since the very first symptom (though of course after the neuro's questions there were hints before).