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Neurofibromatosis
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Help with b12 deficiency
I have
neurofibromatosis
1 and now I have low b12 my nerves help just wondering if there is something can help
I have
neurofibromatosis
1 and now I have low b12 my nerves help just wondering if there is something can help
Vegan10
in
Changing Faces
7 months ago
Schwannomatosis or Neurofibromatosis Type 3 later symptoms!
gland, causing a misdiagnosis of Prostate Cancer, a schwannoma about the size of a baked bean, started after I had a minor stroke in 2008, not operated until 2012 ๐ A complicated medical condition, not fully recognised as a medical condition until 1973 [I had had my first operation in 1970] There is
Neurofibromatosis
gland, causing a misdiagnosis of Prostate Cancer, a schwannoma about the size of a baked bean, started after I had a minor stroke in 2008, not operated until 2012 ๐ A complicated medical condition, not fully recognised as a medical condition until 1973 [I had had my first operation in 1970] There is
Neurofibromatosis
Adlon57
in
Healthy Evidence
1 month ago
Update 8.2
I am attending the CTF
Neurofibromatosis
Conference in Belgium in June. Will also do some vacationing. I will be working at the Summer camp program for youth with medical conditions for two weeks in July. That is really a blast. I have as much fun as the kids.
I am attending the CTF
Neurofibromatosis
Conference in Belgium in June. Will also do some vacationing. I will be working at the Summer camp program for youth with medical conditions for two weeks in July. That is really a blast. I have as much fun as the kids.
hunter5582
in
MPN Voice
3 months ago
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A Bright Note & Travelling with Besremi
The next five days will be at a
Neurofibromatosis
conference, another rare disease I am involved in advocacy and work with. When I get home, I will be off to the Summer Camp for youth with NF and other chronic diseases.
The next five days will be at a
Neurofibromatosis
conference, another rare disease I am involved in advocacy and work with. When I get home, I will be off to the Summer Camp for youth with NF and other chronic diseases.
hunter5582
in
MPN Voice
2 months ago
Update 7.9 = Good News
I just saw both the Neurologist/
Neurofibromatosis
specialist and MPN specialist yesterday. The news was good on both fronts. Neurology Update. At 4.5 years out from surgery, there is no sign of recurrence of the brain tumor.
I just saw both the Neurologist/
Neurofibromatosis
specialist and MPN specialist yesterday. The news was good on both fronts. Neurology Update. At 4.5 years out from surgery, there is no sign of recurrence of the brain tumor.
hunter5582
in
MPN Voice
7 months ago
Hello! New here!
I have a genetic condition called
neurofibromatosis
type 1, migraines, and chronic pain stemming from an incomplete spinal cord injury at the t4/5 level when I was 16. I'm still mobile and mostly able to walk, though my kinesthetic awareness leaves a lot to be desired.
I have a genetic condition called
neurofibromatosis
type 1, migraines, and chronic pain stemming from an incomplete spinal cord injury at the t4/5 level when I was 16. I'm still mobile and mostly able to walk, though my kinesthetic awareness leaves a lot to be desired.
Fluffylittle
in
Neuro Support
2 years ago
effects of malnutrition
Even though I never ever thought that it was possible to have a health condition that causes me more problems than my
neurofibromatosis
. Not being able to eat is messing with my mind. I have no idea how to deal with the losses of time due to malnutrition. I feel like my body is shutting down.
Even though I never ever thought that it was possible to have a health condition that causes me more problems than my
neurofibromatosis
. Not being able to eat is messing with my mind. I have no idea how to deal with the losses of time due to malnutrition. I feel like my body is shutting down.
aintalion
in
Achalasia Action
2 years ago
Ectopic beats
Another condition (
neurofibromatosis
) makes medicating me tricky so I just take Aspirin. Does anyone else have experience of this? I
Another condition (
neurofibromatosis
) makes medicating me tricky so I just take Aspirin. Does anyone else have experience of this? I
lynnieb
in
MPN Voice
3 years ago
An interesting day? 2nd Covid jab and after 50 years finally got a consultant for my Schwannomatosis!
was it
Neurofibromatosis
NF2 in 2006, three surgical removals, one the size of a walnut on my spinal cord. Finally diagnosed in 2017 as Schwannomatosis NF3, by a neurologist!
was it
Neurofibromatosis
NF2 in 2006, three surgical removals, one the size of a walnut on my spinal cord. Finally diagnosed in 2017 as Schwannomatosis NF3, by a neurologist!
Adlon57
in
Positive Wellbeing During Self-Isolation
3 years ago
SCHWANNAMATOSIS and age!
I have had a few 'lumps' since then, example one about the size of a pea right forearm, hurt at first, they all do, but system got used to it, [some actually show coffee mark near, like
Neurofibromatosis
2] it is still there like a 'fatty' lump it does not hurt, this was the first one when I was about
I have had a few 'lumps' since then, example one about the size of a pea right forearm, hurt at first, they all do, but system got used to it, [some actually show coffee mark near, like
Neurofibromatosis
2] it is still there like a 'fatty' lump it does not hurt, this was the first one when I was about
Adlon57
in
Healthy Evidence
4 years ago
MPN + Neurofibromatosis Type 1 (RASopathy)?
Have been wondering how many others on the MPN forum have been diagnosed with both a MPN and
Neurofibromatosis
Type 1 or another RASopathy? Specifically wondering about what you have experienced or learned about the impact of having both of these conditions.
Have been wondering how many others on the MPN forum have been diagnosed with both a MPN and
Neurofibromatosis
Type 1 or another RASopathy? Specifically wondering about what you have experienced or learned about the impact of having both of these conditions.
hunter5582
in
MPN Voice
4 years ago
Update - Good News/Not good news
Due to the
Neurofibromatosis
type 1, it likely will recur someday, but that is a problem for another day. Actually not sweating it. More good news - heart surgery-atrial tachycardia issues continue to do well. The surgery did its job.
Due to the
Neurofibromatosis
type 1, it likely will recur someday, but that is a problem for another day. Actually not sweating it. More good news - heart surgery-atrial tachycardia issues continue to do well. The surgery did its job.
hunter5582
in
MPN Voice
4 years ago
Newly diagnosed
I also have
neurofibromatosis
and some autoimmune conditions that are now well controlled. At this point we are just monitoring with daily aspirin to reduce the chances of thrombosis.
I also have
neurofibromatosis
and some autoimmune conditions that are now well controlled. At this point we are just monitoring with daily aspirin to reduce the chances of thrombosis.
Fluffylittle
in
MPN Voice
4 years ago
Update - PV + NF1-Brain Tumor + Even more excitement!
This tumor is related to another genetic condition I have โ
Neurofibromatosis
Type 1. June 2019 โ another surgery โ this time a craniotomy-resection. The most recent update on this as of November 2019 is that the surgery may have been curative.
This tumor is related to another genetic condition I have โ
Neurofibromatosis
Type 1. June 2019 โ another surgery โ this time a craniotomy-resection. The most recent update on this as of November 2019 is that the surgery may have been curative.
hunter5582
in
MPN Voice
5 years ago
Polycythemia + Brain Tumor - Update
The treatment team at Johns Hopkins Hospital included the Director of Neurosurgery, the Director of the MPN Clinic, The Director of the
Neurofibromatosis
Clinic , and my regular care doctors.
The treatment team at Johns Hopkins Hospital included the Director of Neurosurgery, the Director of the MPN Clinic, The Director of the
Neurofibromatosis
Clinic , and my regular care doctors.
hunter5582
in
MPN Voice
5 years ago
Neurofibromatosis
Has anyone had any dizziness and slurred speech from having
neurofibromatosis
? I had these symptoms last year and they may think itโs something else but I wanted to eliminate
neurofibromatosis
as a cause.
Has anyone had any dizziness and slurred speech from having
neurofibromatosis
? I had these symptoms last year and they may think itโs something else but I wanted to eliminate
neurofibromatosis
as a cause.
GlutenLadYorkshire
in
Healthy Evidence
5 years ago
I'm soooo exhausted
I also get [more] headaches, itchy skin, blurred vision and aching joints - not the good kind ๐ I DO also have severe
neurofibromatosis
1 which causes me many issues, but the way I feel lately is different. Could it be the ET?
I also get [more] headaches, itchy skin, blurred vision and aching joints - not the good kind ๐ I DO also have severe
neurofibromatosis
1 which causes me many issues, but the way I feel lately is different. Could it be the ET?
lynnieb
in
MPN Voice
5 years ago
Anyone has "Schwannamatosis" in Ireland/Northern Ireland/UK?
I have Schwannamatosis or sometimes referred to as NF3, no not
Neurofibromatosis
Type 2 or NF2.
I have Schwannamatosis or sometimes referred to as NF3, no not
Neurofibromatosis
Type 2 or NF2.
Adlon57
in
Healthy Evidence
6 years ago
Haematologist tomorrow, first time in 14 months
I also have
neurofibromatosis
type 1, with many serious complications. I know my platelets have fallen slightly to 1100 from 1500, but I have been noticing some changes. I'm becoming increasingly breathless, and my heart skips beats to the point I feel dizzy.
I also have
neurofibromatosis
type 1, with many serious complications. I know my platelets have fallen slightly to 1100 from 1500, but I have been noticing some changes. I'm becoming increasingly breathless, and my heart skips beats to the point I feel dizzy.
lynnieb
in
MPN Voice
6 years ago
Schwannamatosis!
Looking for anybody with Schwannamatosis not NF2
Neurofibromatosis
type 2, it's just its so rare not even specialists/ neurologists know very much about it, first diagnosed as a medical condition in 1973, love to hear from anybody in similar condition, supposedly one in 40,000 people have it, think its
Looking for anybody with Schwannamatosis not NF2
Neurofibromatosis
type 2, it's just its so rare not even specialists/ neurologists know very much about it, first diagnosed as a medical condition in 1973, love to hear from anybody in similar condition, supposedly one in 40,000 people have it, think its
Adlon57
in
Healthy Evidence
6 years ago
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