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M

mollycat

Active member
Founding Member
Joined
Mar 25, 2008
Messages
38
Location
Buckinghamshire
Hi all fellow members, :grouphug:

I havent been around for a long while - sorry guys :redface: - I have missed a lot of our new members and would like firstly to welcome them all to our "family" :welcome:

I thought i would start a thread to see how everyone is getting on??? - how we all cope?? and basically anything else..... "rants".....welcome here.....

My early story is documented on the first ever post and i will give a quick update here.

As some are aware, I have been battling with the is it MS???? or CD diagnosis for some years - well guesss what peeps.....I am still in limboland and still have both as posibilities.

I have had a difficult year, I am as confused as the docs, sometimes i feel Mmm I think this is MS - and other times I think well this sounds like CD, either way, I am sticking around here ( if you will have me ? ) as i feel whatever the diagnosis we ALL have something to add to the "pot" as it were as our journey's are similar either way.

I have recently been to a CBT and hypnotherapist ( had to pay privately as i asked GP but not available NHS! I was getting desperate for something to help and figured in might be worth it ) anyone one else tried this??? it was interesting and has got me really thinking about the things in my childhood and earlier years that i suppose i could have repressed somehow unwittingly, anyway I digress, it was useful in some ways, very distressing in other ways and I am not certain how i feel about it all yet and was hoping for a little bit of feedback from you guys please? if you could share anything it would really help me try to get my head around this thing???

Also interestingly I was unable to be hypnotised - the chap i see is highly respected and says it is very unusual, only a small percentage of the population cannot be hypnotised but somehow my sub-concious mind wouldn't let him in??? or something to that effect, he says the trauma and repressed experiences are stopping him accessing the part of the brain he needs for hypnotherapy, this has really got me convinced the CD is my culprit, but then he went onto to say that brain damage ( ie: MS type lesions of which i have many, many in my brain ) could also be responsible if they were in the right areas - I am really confused :confused: literally NO-ONE can make thier mind up so how the hell am i supposed to? I mean I could really do with a definate diagnosis of some sort so I can begin the long road of acceptance and hopefully recovery.

I am happy now another 12 months down the line to accept either diagnosis as I am still yet to be offered any treatment at all, not that there are many out there but the offer would be nice. I am still treated at best with distain by the medical bod's and my family really, really struggle too, it is hard experiencing these very "real" to me symptoms relentlessly and having no answers, no diagnosis, no treatments ect. I am certain I ecco others experiences here in one way or another???

Anyway -please add to this your updates and hopefully we can get a stronger picture of what CD is for us and begin our fights for recovery together.

Take care ALL and kind regards

Mollycat :hug: x x x
 
D

Dollit

Guest
Re your hypnosis I found this quote on a website

There is a widely held belief that 2% of the population are unable to be hypnotised. The truth of the matter is you are in control, so if you decide not to be hypnotised, no one can hypnotise you

As for him blaming lesions for not being able to hypnotise you - if you decide to do it again I'd think very carefully about who you go to. He doesn't seem to be quite right.

And it's good to see you back!
 
M

mollycat

Active member
Founding Member
Joined
Mar 25, 2008
Messages
38
Location
Buckinghamshire
Thank you

HI Dollit,

Thank you for your reply and good to hear from you again.

Yes I too had done some research and found that very quote, that is what he is saying really but that I am not trying not to be hypnotised conciously but rather the CD and subconcious is taking over after all CD is a conditon of the subconcious, I mean if my brain can convice my body I have a debilitating Neurological illness and I am totally not in control of that or even aware my brain is converting my repressed trauma into symptoms then it would be very easy for it to be able to fool my brain under hypnosis even....who knows.

I am in a relaxed state and do achieve the first level of relaxation but my body simply does not respond to his comands - ie: when he asks me to swallow or move my arm I think i have done it and actually would swear on the bible I have but in reality he says i never moved, he has never come accross this before in many years of practice and does or did have a 100% success rate for hypnotising people so I guess he could be right.

I am not going back until i have spoken with the head office of the company in London as I do not feel a) financially i can afford it or b) it is actually helping at all if I am not responding.

He was just looking at possibilites I think as brain damaged people cannot usually be hypnotised so was working along that theory.

Ho-Hum back to the drawing board.

Take care

Mollycat :hug:
 
6

6docsnoDX

New member
Joined
Apr 16, 2009
Messages
2
Location
Tennessee (USA)
New here and need a person to give me advice..

I was admitted into the hospitial in 2006 near Christmas. I had Symptoms of MS and also Parkinsons. I was told by the Physician/ A Neurologist that I had Dopa-Responsive Dystonia. I was then put on Parkinsons Meds and Baclofen. The Doctor left the State for Christmas Vacation. I was then put in the care of one of her Collegues. Discharged with a wheelchair and pills. Still thinking ?? What is wrong??.. I walked into the Hospitial but Wheelchaired out??. I continued to take the Meds as instructed. No F/U appt was scheduled.?? I wanted a Second Opinion. Not Knowing what my DC diagnosis was. I got an Appt with another Neuro. Come to find out This Neuro was also Affiliated with the other ones. and the DC diagnosis was not Parkinsons, Dystonia or MS but ... (Conversion Disorder!!) I have been passed over and Ejected from almost every Doctors office around because of this DX. I don't think it is CD!!. I have a good Neurologist now that says it is Neuropathy. But for some reason he all of a sudden needs me to get a Second Opinion??. Now I am Scared!! No one else will see me probably with this past DX what should I do. My Current Doc isn't Affiliated with the others but there aren't any more around that aren't Affiliated?? any Suggestions?? Sorry such a long Post.:redface: Any help will be Appreciated.
 
S

schizolanza

ACCOUNT CLOSED
Joined
Sep 22, 2008
Messages
3,160
You might get a better response if you start your own thread.
 
M

mollycat

Active member
Founding Member
Joined
Mar 25, 2008
Messages
38
Location
Buckinghamshire
Hi there and :welcome:,

Thank you for sharing your story here, and please do not apologise for the long post - believe me I am the master at long posts and please rant as much as you need too, this journey is a very long road and need's to be aired from time to time so go right ahead.

I can empathise with your journey, the many neuro's, specialists docs ect and also not ever being listen too once the CD diagnosis label has been applied even if the diagnosis is questionable like ours. It does seem a common theme among us sufferers and one I don't have any concrete answers for sorry but I will try to help by identifying the similarities and explaning what i have done so far.

I also suffer from the affliated collegue of neuro's syndrome and feel that they have a blinkered view before we are seen, I too am currently seeing a new neuro who is in a different area and CD has not been mentioned so far and he is convinced that with my history and lesions ect it is MS, time will tell he says. It is very strange as the other neuro's i saw at the same hospital as my initial neuro ALL agreed with her eventual diagnosis of CD after i had been told diagnoses of Parkinson's, MS, or a brain tumor over a period of 3 years - interesting isn't it.

I can only suggest in your position that you ask why the new neuro want's the second opinion? until you know why I guess you will remain worried, i know i would be too. Also explain that you may prefer not to have a second opinion, it is your right to decline if you want too, I think i may decline if the option ever comes up again.

Not really sure what else i can offer other than I do understand your concerns, I would try speaking with your neuro and take it from there.

Meanwhile please keep in touch and let me know how you are getting on.

Take good care and kind regards

Mollycat :hug:
 
6

6docsnoDX

New member
Joined
Apr 16, 2009
Messages
2
Location
Tennessee (USA)
Thank you :flowers:Mollycat for your Advice. I think I will Definately look into the Second Opinion Idea before I proceed with actually Seeing another Doc. I am glad to know that I am not alone in this and there are more people out there that have the same problems that I have. I had Begun to think i had a very Rare form of problem that the docs just didn't want to touch. :evil: If I did they just didn't want to get it too. LOL!! I wish they could feel like me for one day then may be they would understand then instead of pushing me aside like yesterdays trash. Thanks again, Renee or 6docsnodx.:oops:
 
M

mollycat

Active member
Founding Member
Joined
Mar 25, 2008
Messages
38
Location
Buckinghamshire
Hi again Renee,

Firstly you are not alone!, :grouphug:

CD is very rare as you can tell from the small amount of posts on our forum but there are people like you and I out there struggling as we do everyday - I have also thought i wish they could live my life for just one day..... If it were them would they be happy to be disguarded with the rubbish as you say - I very much doubt it. :mad::D

Our symptoms are equal to the diverse effects of Multiple Sclerosis or other neurological diseases yet we get NO help what so ever - our disabliites are "real" to us and just as disabling as in MS, yet still NO help is offered, Our brains are in control we cannot influence the process of conversion, it does have very real phsical limitations and frustrations just the same as if we did have MS - still no help is available. If we had MS we would have a very very different response from the medics and the help would be "out there" if we chose to take it. As it is we are ignored as the treatment Literally - that is the treatment.

Good old Freud said medics must not aknowledge a person with CD they should not discuss the symptoms and no medical help or tests should be performed, the theory is that the conversion of stress will resolve once the focus is shifted away from any stress - Mmmm well ok then why are we not improving????

I too am still of the belief that science has simply not found the cause of our difficulties similarly as MS was a MH diagnosis some years ago before the MRI machine was invented and then it could be seen on sceen, I feel that we have something that as yet cannot fully be identified, I mean they only test us for already "known" conditions and we dont fully meet the box, No one is interested in trying to find out further what could be the cause, just the diseases that are already discovered are ruled out, Well that says it all to me they have no idea how most of our brains work anyway so they will not be able to identify our illness before they understand what to test us for.

As I say, be pro-active and dont give up if you feel it is not CD then keep looking, I am certain one day THIS WILL ALL BECOME CLEAR ONCE NEWER DIAGNOSTIC TESTS BECOME AVAILABLE.

Staying positive helps - not always easy but i do try to smile and laugh most days - regardless of symptoms. :D

Take care and if you need anything further let me know.

Mollycat :hug:
 
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