Author Topic: Good news, follows bad, the ups and downs of chronic Illness  (Read 4687 times)

Offline jon

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Hi all,
Wasn't sure whether to post this here or not. But as I have doubts about my diagnosis, maybe this is the place.

I find it difficult at times to separate the two conditions I have, I often think I should not really discuss Hnpp here on menieres forums, and conversely shouldnt discuss meniere's on Hnpp/cmt/hmsn forums. But it's not that easy as both are very much part of my life and have been for such a long time.

CMT - Charcot-Marie-Tooth = A group of neuropathies given the name of the identifying doctors
HMSN - Hereditary Motor Sensory Neuropathy = A more modern description/name for CMT
HNPP - My particular form of HMSN - Hereditary Neuropathy with liability to Pressure Palsy.

After all the problems with my sons health the other day, and my own problems coping with pain and disability caused by both conditions, I was reaching quite a low ebb. I have also heard many testimonies of others with hnpp who were going through similar problems, ie those mainly of recognition of health problems and aquisition of suitable health care.
Well, after quite some time of hassling and hustling, quite a few positive changes have started to ripple in.

I've been contacted by a health charity who would like to do an interview with me. It will be on Hnpp and will feature in their rare conditions section. That will be good, and will help to raise awareness.
almost immediately after receiving this news, I had a further message, asking me to take part in a steering committee set up to write a health booklet on HMSN/CMT with the intention of including Hnpp within that update of the booklet.

Quite a turn around in fortune! Well, yesterday started off at such a low ebb and quickly turned around. My neuro appointment went really well to cap it all. There really does seem to have been a positive change in attitude toward Hnpp, that I think more information is reaching diagnosing doctors. There's not a lot that they can do for us, but meeting doctors who have a better understanding of our problems really does help.
I hope this isnt a false dawn, it seems real enough.
Now all I want is for Chris to be cleared of any major problem, there is a possibilty that it was a one-off lapse of consciousness, and nothing to do with epilepsy. Virtual fingers tightly crossed (even though I'll get a virtual palsy in them).

Thanks all, for listening,
Jon.
Tinnitus and deafness left ear 1981 onwards.
Diagnosed with meniere's in 1993.
Retired from work 1995.
HNPP - Hereditary Neuropathy with Pressure Palsy

Offline jan

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Good news, follows bad, the ups and downs of chronic Illness
« Reply #1 on: Apr 13 2005, 11:13 AM »
congratulations for being asked to be on a steering commitee :D and to be interviewed on hnpp.i am pleased your appt went well. :D its good to talk /listen to someone who understands what is going .you are so very articulate jon,you will be good .your a bit clever too :lol:
                  jan
keep smiling!!

barbara

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Good news, follows bad, the ups and downs of chronic Illness
« Reply #2 on: Apr 13 2005, 11:16 AM »
Hi Jon,
Glad to hear you have got some good news at last. :D  It has been a long time coming. :!:  :!:
Anything that highlights and brings to the attention of others, doctors included :evil: , these distressing conditions is a step in the right direction.
Hope the good fortune continues and your sons condition turns out to be a one off.

Offline Christina

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Good news, follows bad, the ups and downs of chronic Illness
« Reply #3 on: Apr 13 2005, 11:25 AM »
That sounds very positive Jon.  It's great when someone finally wants to listen.  I really hope the news is good for Chris. It could well be a one off especially in adolescence.  Keep us posted.
Chris
not waiting for the storm to pass, but learning to dance in the rain ...

Offline Fiona

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Good news, follows bad, the ups and downs of chronic Illness
« Reply #4 on: Apr 13 2005, 03:52 PM »
Hi Jon,
I am glad you did this post,also that things look brighter for you.
Reading it, I was made more aware of the fact that I am not alone in having "other " health issues with no real answers from my Doctor. I am now steeling myself to go back for the doctor to go over the results of recent scans and xray as I was told they were clear,good news really, but this has not been an answer to my ongoing symptoms :roll:  :?  :!:

Fiona

Offline jon

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Good news, follows bad, the ups and downs of chronic Illness
« Reply #5 on: Apr 13 2005, 08:55 PM »
Wow! Thanks everyone for the well-wishes, Chris seems well, back to school and working hard for his Gcse exams. Stress may have had an input, he has been working very hard.
Jan, I'm embarrassed in a pleasant way, lol, I've had to widen the doors to get my head through :lol:  :lol:  :lol:   8)

Fiona, good luck with your doctor, keep at it, it can take time. Don't give up. Everyone here is so supportive, I'm sure they'll help you through those difficult times. Not knowing is so difficult to cope with. Have you seen any other specialist yet, or just the ENT?

Jon.
Tinnitus and deafness left ear 1981 onwards.
Diagnosed with meniere's in 1993.
Retired from work 1995.
HNPP - Hereditary Neuropathy with Pressure Palsy

Offline yvonne

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Good news, follows bad, the ups and downs of chronic Illness
« Reply #6 on: Apr 17 2005, 11:28 AM »
I'm pleased everything is looking up Jon,

Yvonne

Offline jon

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Good news, follows bad, the ups and downs of chronic Illness
« Reply #7 on: Apr 20 2005, 04:07 PM »
I did the interview with TargetMD today, that's MD as in Muscular dystrophy, confusing really, HMSNs were once classed as MDs but now the preferred class is neuromuscular . And of course it is easy to confuse with MD - meniere's disease...Doh!

It went well I think, they'll let me see a draft before it is published.

It's a bit embarrassing really, still it's for a good cause. I hope i havent messed it up!

Jon
Tinnitus and deafness left ear 1981 onwards.
Diagnosed with meniere's in 1993.
Retired from work 1995.
HNPP - Hereditary Neuropathy with Pressure Palsy

Offline Christina

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Good news, follows bad, the ups and downs of chronic Illness
« Reply #8 on: Apr 20 2005, 04:11 PM »
Well done Jon.  I'm sure you won't have messed it up in the slightest. Good on you for highlighting the problems.
Chris
not waiting for the storm to pass, but learning to dance in the rain ...

Offline jan

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Good news, follows bad, the ups and downs of chronic Illness
« Reply #9 on: Apr 20 2005, 07:59 PM »
hi jon,i bet you were a little star  8)   8) .i dont want to embarass you again :lol:  :lol: well done.
                                      jan
keep smiling!!