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Neurofibromatosis
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Depression :(
My brothers all have their own struggles (disabilities such as autism, lupus,
neurofibromatosis
I believe is what it is called & speech disorder). & my one true friend is depressed with his own life. I recently had encountered a girl & went through the "motions" with her.
My brothers all have their own struggles (disabilities such as autism, lupus,
neurofibromatosis
I believe is what it is called & speech disorder). & my one true friend is depressed with his own life. I recently had encountered a girl & went through the "motions" with her.
Dragon1940
in
Anxiety and Depression Support
6 years ago
NEUROFIBROMATOSIS 💙💚
Is there anyone else that Has NF? I'm 47 yrs old & just recently​started taking black seed oil, & it's amazing
Is there anyone else that Has NF? I'm 47 yrs old & just recently​started taking black seed oil, & it's amazing
Boyer
in
Healthy Eating
7 years ago
Schwannamatosis and Lyrica
Have just been prescribed Lyrica for a growth on my spine, I am still awaiting whether I have
Neurofibromatosis
type 2 or schwannamatosis but now have very bad reactions to my scoliosis, joint pain etc, from this medication.
Have just been prescribed Lyrica for a growth on my spine, I am still awaiting whether I have
Neurofibromatosis
type 2 or schwannamatosis but now have very bad reactions to my scoliosis, joint pain etc, from this medication.
Adlon57
in
Healthy Evidence
7 years ago
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NF2 neuroma and Lyrica [Pregabalin] and scoliosis do not mix!!
Honestly I need surgery, THAT is the ONLY answer which I have had twice, successfully before, for the NF2 [
Neurofibromatosis
type 2]! It may be a new drug but does not work for me!
Honestly I need surgery, THAT is the ONLY answer which I have had twice, successfully before, for the NF2 [
Neurofibromatosis
type 2]! It may be a new drug but does not work for me!
Adlon57
in
Healthy Evidence
7 years ago
Schwannamatosis [NF3] or Neurofibromatosis [NF2]
Just had results, testing whether I have one or the other, I have symptoms for both, more tests are lined up, I jokingly said maybe I have NF4? Does not exist, but she did not smile, maybe I have a new condition, "Adlonamatosis or NF4"? Medical magazine cover stuff? OOOH!!! ADLON57 ps a bit of humour
Just had results, testing whether I have one or the other, I have symptoms for both, more tests are lined up, I jokingly said maybe I have NF4? Does not exist, but she did not smile, maybe I have a new condition, "Adlonamatosis or NF4"? Medical magazine cover stuff? OOOH!!! ADLON57 ps a bit of humour
Adlon57
in
MPN Voice
7 years ago
Annoyed at my haematologist's attitude
I have other health problems including
neurofibromatosis
, and I just want to feel a bit better. So frustrating
I have other health problems including
neurofibromatosis
, and I just want to feel a bit better. So frustrating
lynnieb
in
MPN Voice
7 years ago
Neurofibromatosis type 2 [NF2] or Schwannamatosis [NF3]
I am currently waiting for results whether I have one or the other, via DNA/Blood tests. It is the way I am getting these 'growths', I seem to find if I get bashes; broken ribs, bad bruise, a stroke or even the latest actually taking blood from my arm? If anybody has either of these rare conditions do
I am currently waiting for results whether I have one or the other, via DNA/Blood tests. It is the way I am getting these 'growths', I seem to find if I get bashes; broken ribs, bad bruise, a stroke or even the latest actually taking blood from my arm? If anybody has either of these rare conditions do
Adlon57
in
Healthy Evidence
7 years ago
Fibro help and information please
Hey all you amazing people, my neurologist diagnosed me with Fibromyalgia, I was attending him for
neurofibromatosis
type 1, "NF1 short" am the pain I am in is not related to nf type pain.
Hey all you amazing people, my neurologist diagnosed me with Fibromyalgia, I was attending him for
neurofibromatosis
type 1, "NF1 short" am the pain I am in is not related to nf type pain.
Jillian76
in
Fibromyalgia Action UK
7 years ago
Schwannomatosis?
Having to learn these strange sounding and spelt terms would there be any sort of societies which deal with Schwannomatosis or would I have to get in touch with the various
Neurofibromatosis
societies? Adlon
Having to learn these strange sounding and spelt terms would there be any sort of societies which deal with Schwannomatosis or would I have to get in touch with the various
Neurofibromatosis
societies? Adlon
Adlon57
in
Healthy Evidence
7 years ago
When to medicate
I take aspirin, but no other medication for the ET (but a lot for other conditions relating to my
neurofibromatosis
1). My health isn't good, and hasn't been for many years, and getting diagnosed with ET was a blow. The thing is, I'm confused as to the criteria for medication.
I take aspirin, but no other medication for the ET (but a lot for other conditions relating to my
neurofibromatosis
1). My health isn't good, and hasn't been for many years, and getting diagnosed with ET was a blow. The thing is, I'm confused as to the criteria for medication.
lynnieb
in
MPN Voice
8 years ago
Bilateral acoustic neuroma
Hi my brother about 16 yrs old was diagnosed with bilateral acoustic neuroma(
neurofibromatosis
type 2) in july 2016 ..his left tumour was 4cm and size of the right one was 3 cm .at that time his condition was allright he could hear and had no real balance issues...then in august we had him undergone
Hi my brother about 16 yrs old was diagnosed with bilateral acoustic neuroma(
neurofibromatosis
type 2) in july 2016 ..his left tumour was 4cm and size of the right one was 3 cm .at that time his condition was allright he could hear and had no real balance issues...then in august we had him undergone
Asimjunaid
in
Acoustic Neuroma Support
8 years ago
My platelets are high, but I'm not on medication
I'm 46, and I also have
neurofibromatosis
1. I feel rubbish most of the time, and would gladly take something if it'd help. I'm just on Aspirin though, for the 18 months since I was diagnosed.
I'm 46, and I also have
neurofibromatosis
1. I feel rubbish most of the time, and would gladly take something if it'd help. I'm just on Aspirin though, for the 18 months since I was diagnosed.
lynnieb
in
MPN Voice
8 years ago
Neurofibromatosis NF2 affecting main organs?
I have NF2 and had it for many years. But recently have acquired the brown marks around top left chest, obviously not heart trouble, but causing considerable pain in that region. I can breathe normally, the pain under the skin, uncomfortable, but could it indirectly affect the heart?
I have NF2 and had it for many years. But recently have acquired the brown marks around top left chest, obviously not heart trouble, but causing considerable pain in that region. I can breathe normally, the pain under the skin, uncomfortable, but could it indirectly affect the heart?
Adlon57
in
Healthy Evidence
8 years ago
Parkinson's , Epilepsy, Neurofibromatosis, Alzheimer's, dementia do not come to Northern Ireland.
Recently reported that care for people with Parkinson's disease and epilepsy in England is lacking. Come to stone-age Northern Ireland where neurological care is ... stone-age! People with various neurological conditions are left to hibernate, no specialists to report to, go to England for neurological
Recently reported that care for people with Parkinson's disease and epilepsy in England is lacking. Come to stone-age Northern Ireland where neurological care is ... stone-age! People with various neurological conditions are left to hibernate, no specialists to report to, go to England for neurological
Adlon57
in
Healthy Evidence
8 years ago
Could the side effects of Neurofibromatosis type 2 [NF2] be mistaken for Parkinson's Disease?
Having NF2 with shaking hands, unsteady gait, small term memory loss, etc, be mistaken for the similar effects of Parkinson's Disease? Would they be related in some way?
Having NF2 with shaking hands, unsteady gait, small term memory loss, etc, be mistaken for the similar effects of Parkinson's Disease? Would they be related in some way?
Adlon57
in
Healthy Evidence
9 years ago
Is there any sort of medical research being done for Neurofibromatosis type 2?
It is a rare terminal genetic condition, [also known as von Recklinghausen's disease], whereby neurofibromas form under the skin all over the body, usually on the actual nerve. Which in turn can form other medical complications.Something like one in 35,000 have this condition, I suppose because it is
It is a rare terminal genetic condition, [also known as von Recklinghausen's disease], whereby neurofibromas form under the skin all over the body, usually on the actual nerve. Which in turn can form other medical complications.Something like one in 35,000 have this condition, I suppose because it is
Adlon57
in
Healthy Evidence
9 years ago
Got my bmb results. Sort of good news...
Things are complicated by the fact I also have
neurofibromatosis
1. For now though, I'm just going to be monitored. I'll have another bmb in February, and they'll see how thins look then. So it could have been much worse, I have to be thankful for small mercies.
Things are complicated by the fact I also have
neurofibromatosis
1. For now though, I'm just going to be monitored. I'll have another bmb in February, and they'll see how thins look then. So it could have been much worse, I have to be thankful for small mercies.
lynnieb
in
MPN Voice
9 years ago
Ehlers danlos and neurofibromatosis?
I've been seeing specialist for years now, and been diagnosed with these 2 disorders among many, however the specialist has said , the symptoms 'overlap' They don't know which symptoms from which disorder, does anyone else suffer from nf1?
I've been seeing specialist for years now, and been diagnosed with these 2 disorders among many, however the specialist has said , the symptoms 'overlap' They don't know which symptoms from which disorder, does anyone else suffer from nf1?
Honestlyno
in
Ehlers-Danlos Support UK
9 years ago
Neurofibromatosis,
Hi, Could I please ask, does anybody have above and PAF is a symptom of this disease . Thanks, Catherine
Hi, Could I please ask, does anybody have above and PAF is a symptom of this disease . Thanks, Catherine
Hidden
in
AF Association
10 years ago
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