Experiences with

Neurofibromatosis

. * Pediatric neurofibromatosis. * Primary ciliary dyskinesia. While I'm sure many of us have never heard of most of these (except PBC, of course) think how frustrating it must be for those few who do have any of these conditions. Little help or information for them I would imagine.

It's only this year that I was told that I have FND , and was put down to anxiety and my childhood days , not only do I have fnd I also suffer from Nf1 ( neurofibromatosis )sorry if the spelling in wrong that courses Neuroendocrine cancer that I've had twice and still have regular tests .

I had been diagnosed 'officially' in 2006 as having Neurofibromatosis type 2.

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 🙄 A complicated medical condition, not fully recognised as a medical condition until 1973 [I had had my first operation in 1970] There is Neurofibromatosis

I have neurofibromatosis 1 and now I have low b12 my nerves help just wondering if there is something can help

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.

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 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 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.

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.

Another condition (neurofibromatosis) makes medicating me tricky so I just take Aspirin. Does anyone else have experience of this? I

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!

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

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.

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.

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.

This tumor is related to another genetic condition I have – Neurofibromatosis Type 1. June 2019 – another surgery – this time a craniotomy-resection. The most recent update on this as of November 2019 is that the surgery may have been curative.

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.

Has anyone had any dizziness and slurred speech from having neurofibromatosis? I had these symptoms last year and they may think it’s something else but I wanted to eliminate neurofibromatosis as a cause.

I also get [more] headaches, itchy skin, blurred vision and aching joints - not the good kind 😜 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?