Anybody out there have neurofibromatosis? I have type 1, and wasn't even diagnosed until I was in my early 30s.
I started the program in late July, but have no home computer. That makes it hard for me to spend much time checking the support group site. If I seem to be invisible, that's why.
purpmartin
Neurofibromatisis
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NH Cat Lady
- Posts: 8
- Joined: Mon Nov 12, 2007 12:34 pm
Hi Purpmartin-
I can't believe I'm reading someone else having NF! I too have type 1 and wasn't diagnosed until my early 30's. It was suspected earlier but called something else at the time.
I know you said you don;t have a computer so I hope you get this message and we get the chance to chat, you are the first person I've ever met that had it as well. (It's the main reason I did not have children).
How has it affected you? I've had multiple corrective surgeries starting at age 5 for a leg growth problem, and the most extreme being full spinal surgery (age 32) to correct sever scoliosis. Plus having a few of the growths removed if they got too big.
In an add way, I think the NF has forced me to take care of myself physically more than I would have if I didn't have this disease. Everytime I stopped exercising for any length of time, I ended up having to have major surgery on some part of my body - so trying to stay physically fit as best I can was a no brainer. Granted, there's lots I just can't do and have to do the best I can.
Much of my anxiety stems from my physical issues. "Do people think I still walk funny" "Are they grossed out by all the lumps" (that get worse as I get older). I won't wear a dress that shows my knees because of all of the scaring but I can walk, so who cares!
I will most likly start a different thread about physical issues and how it relates to anxiety and depression, but it was comforting to hear another out there with this particular one.
Angelica
I can't believe I'm reading someone else having NF! I too have type 1 and wasn't diagnosed until my early 30's. It was suspected earlier but called something else at the time.
I know you said you don;t have a computer so I hope you get this message and we get the chance to chat, you are the first person I've ever met that had it as well. (It's the main reason I did not have children).
How has it affected you? I've had multiple corrective surgeries starting at age 5 for a leg growth problem, and the most extreme being full spinal surgery (age 32) to correct sever scoliosis. Plus having a few of the growths removed if they got too big.
In an add way, I think the NF has forced me to take care of myself physically more than I would have if I didn't have this disease. Everytime I stopped exercising for any length of time, I ended up having to have major surgery on some part of my body - so trying to stay physically fit as best I can was a no brainer. Granted, there's lots I just can't do and have to do the best I can.
Much of my anxiety stems from my physical issues. "Do people think I still walk funny" "Are they grossed out by all the lumps" (that get worse as I get older). I won't wear a dress that shows my knees because of all of the scaring but I can walk, so who cares!
I will most likly start a different thread about physical issues and how it relates to anxiety and depression, but it was comforting to hear another out there with this particular one.
Angelica
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purpmartin
- Posts: 40
- Joined: Wed Jul 18, 2007 1:49 pm
Hi, Angelica,
My current neurologist seems to be saying that NF-1 tumors in my thalamus are why I'm always exhausted, have a sleep disorder, and assorted other difficulties. It sounds as though your case is worse than mine, though.
I, too, have met few or no others who have the condition. My case seems to be one of a new mutation because as far as I know, nobody else in the family has NF.
I've never married, much less had any kids. As time goes on, I'm more and more glad that I didn't; I might have unknowingly passed NF on to one or more of them.
In Sept. 1988 I had a stereotactic biopsy of a "bright spot" (shown on MRIs) in my brain. I think they said at the time that the results were inconclusive; later it seemd that it was NF. I've also had a few skin tumors removed. The first one, in fact, was how I got diagnosed.
Other signs of NF-1 were present from my childhood, but went unrecognized for what they are.
I've got to get back to work. BTW, I love your kitty picture. I used to have two Maine Coons.
purpmartin
My current neurologist seems to be saying that NF-1 tumors in my thalamus are why I'm always exhausted, have a sleep disorder, and assorted other difficulties. It sounds as though your case is worse than mine, though.
I, too, have met few or no others who have the condition. My case seems to be one of a new mutation because as far as I know, nobody else in the family has NF.
I've never married, much less had any kids. As time goes on, I'm more and more glad that I didn't; I might have unknowingly passed NF on to one or more of them.
In Sept. 1988 I had a stereotactic biopsy of a "bright spot" (shown on MRIs) in my brain. I think they said at the time that the results were inconclusive; later it seemd that it was NF. I've also had a few skin tumors removed. The first one, in fact, was how I got diagnosed.
Other signs of NF-1 were present from my childhood, but went unrecognized for what they are.
I've got to get back to work. BTW, I love your kitty picture. I used to have two Maine Coons.
purpmartin
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NH Cat Lady
- Posts: 8
- Joined: Mon Nov 12, 2007 12:34 pm
Hi Purpmartin,
Sorry to be off line for so long. I was involved in a show (that ended this past weekend) so I was swamped for the last month.
It's interesting about the sleep issues. I have them too so it makes me wonder if it's related to the NF. I have a great doctor but she admits that I am her only NF patient. Finding a doctor for adults that is familiar with Nf has been my biggest challenge. They all seem to be pediatrians or specialists in genetics. We both know you don't grow out of this disease, if anything, it gets worse with age.
The NF was suspected when I was 18, but not really diagnosed until my 30's. I'm just glad more doctors are learning about it.
Hope your holiday is peaceful!
Sorry to be off line for so long. I was involved in a show (that ended this past weekend) so I was swamped for the last month.
It's interesting about the sleep issues. I have them too so it makes me wonder if it's related to the NF. I have a great doctor but she admits that I am her only NF patient. Finding a doctor for adults that is familiar with Nf has been my biggest challenge. They all seem to be pediatrians or specialists in genetics. We both know you don't grow out of this disease, if anything, it gets worse with age.
The NF was suspected when I was 18, but not really diagnosed until my 30's. I'm just glad more doctors are learning about it.
Hope your holiday is peaceful!
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purpmartin
- Posts: 40
- Joined: Wed Jul 18, 2007 1:49 pm
Hi, NH Cat Lady,
It's good to hear from you again. I hope the [cat?] show went well.
I see both a dermatologist and a neurologist about the NF. The neurologist recently referred me to a physical therapist, to work on the dizziness issue. The PT thinks I may have posterior canal related BPPV, and wants to try some treatment (the Eply maneuver?) that might help.
She told me some interesting things about dizziness. It could mean migraine; migraine doesn't always present as headache. I wonder whether it could contribute to poor-quality sleep, too?
purpmartin
It's good to hear from you again. I hope the [cat?] show went well.
I see both a dermatologist and a neurologist about the NF. The neurologist recently referred me to a physical therapist, to work on the dizziness issue. The PT thinks I may have posterior canal related BPPV, and wants to try some treatment (the Eply maneuver?) that might help.
She told me some interesting things about dizziness. It could mean migraine; migraine doesn't always present as headache. I wonder whether it could contribute to poor-quality sleep, too?
purpmartin
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NH Cat Lady
- Posts: 8
- Joined: Mon Nov 12, 2007 12:34 pm
No, the show wasn't a cat show. In my area there's a big annual winter show. Includes a lot of music and pagentry. I create props and work backstage. It's mostly volunteer work, but gives me a creative outlet that I don't get elsewhere.
I have the dizziness too. I can't put my head back in the shower without having to hold the wall. Over time, I've learned to be really careful about how I tilt my head. Things like asking to dentist to tilt me back slowly, things like that. I've also found if when I tilt my head back, if I close my eyes when I'm tilting my head back up (very slowly) I don't get as dizzy. It doesn't prevent it completly, but it helps. For the ringing in my ears, I just always try to have some kind of background noise - especially when I'm trying to go to sleep or working. (Environmental CDs, things like that).
I used to get migraines, but I'm in a phase with none. (My mother and brother also had them). Mine were always accompanied by sever nausea, light and sound sensitivity. It took a long time for me to figure out my triggers. Stress, lack of sleep, and anything carbonated seemed to be top of the list.
This is my first day back on the program after taking a holiday break. Hope you had a good holiday!
NH Cat Lady
I have the dizziness too. I can't put my head back in the shower without having to hold the wall. Over time, I've learned to be really careful about how I tilt my head. Things like asking to dentist to tilt me back slowly, things like that. I've also found if when I tilt my head back, if I close my eyes when I'm tilting my head back up (very slowly) I don't get as dizzy. It doesn't prevent it completly, but it helps. For the ringing in my ears, I just always try to have some kind of background noise - especially when I'm trying to go to sleep or working. (Environmental CDs, things like that).
I used to get migraines, but I'm in a phase with none. (My mother and brother also had them). Mine were always accompanied by sever nausea, light and sound sensitivity. It took a long time for me to figure out my triggers. Stress, lack of sleep, and anything carbonated seemed to be top of the list.
This is my first day back on the program after taking a holiday break. Hope you had a good holiday!
NH Cat Lady
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purpmartin
- Posts: 40
- Joined: Wed Jul 18, 2007 1:49 pm
Hi, NH Cat Lady,
Do you think you might have BPPV? Getting dizzy when you tip your head back is a typical symptom. In fact, I've been describing symptoms of BPPV to doctor after doctor for twenty YEARS. (Didn't they hear me?)
The physical therapist said to look for a doctor who treats vestibular migraine. She also suggested neuro-opthalmalogy and/or otoneurology as possibilities.
Time to get busy again.
purpmartin
Do you think you might have BPPV? Getting dizzy when you tip your head back is a typical symptom. In fact, I've been describing symptoms of BPPV to doctor after doctor for twenty YEARS. (Didn't they hear me?)
The physical therapist said to look for a doctor who treats vestibular migraine. She also suggested neuro-opthalmalogy and/or otoneurology as possibilities.
Time to get busy again.
purpmartin
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purpmartin
- Posts: 40
- Joined: Wed Jul 18, 2007 1:49 pm
Hi, NH Cat Lady,
How have you been?
I'm still trying to adjust to the change to Daylight time. We've had a lot of overcast this week, which only makes it darker in the morning and even harder to wake up.
After about six months of getting low (for me) blood pressure readings, my doctor sent me for tilt-table testing. The results "seemed negative". I was supposed to see the doctor today for a follow-up, but my appointment got cancelled on me, and now I don't see her for over a week. Galling, isn't it?
I hope your NF isn't giving you any more problems. The report of my last MRI (about a month ago) said something about dural ectasia of the right optic nerve. I didn't get to read the report until I'd left the doctor's office, and she didn't mention it during my visit. I suppose that means I don't have to worry about it right away.
Thank goodness my neurologist isn't in a big hurry to put me on more meds. She ordered an EEG as well as the usual annual MRI, and it was abnormal. Some kind of spikes showed up that look like seizure, but I don't seem to have symptoms of seizures. There weren't many of the spikes, and the doctor wants me to have a repeat EEG in about July. Then we'll see.
What's you weather like? New Orleans has had about a half-dozen tornado watches since New Year's. That's a record, I think. And high temperatures are starting to get up to about 80! Whew.
purpmartin
How have you been?
I'm still trying to adjust to the change to Daylight time. We've had a lot of overcast this week, which only makes it darker in the morning and even harder to wake up.
After about six months of getting low (for me) blood pressure readings, my doctor sent me for tilt-table testing. The results "seemed negative". I was supposed to see the doctor today for a follow-up, but my appointment got cancelled on me, and now I don't see her for over a week. Galling, isn't it?
I hope your NF isn't giving you any more problems. The report of my last MRI (about a month ago) said something about dural ectasia of the right optic nerve. I didn't get to read the report until I'd left the doctor's office, and she didn't mention it during my visit. I suppose that means I don't have to worry about it right away.
Thank goodness my neurologist isn't in a big hurry to put me on more meds. She ordered an EEG as well as the usual annual MRI, and it was abnormal. Some kind of spikes showed up that look like seizure, but I don't seem to have symptoms of seizures. There weren't many of the spikes, and the doctor wants me to have a repeat EEG in about July. Then we'll see.
What's you weather like? New Orleans has had about a half-dozen tornado watches since New Year's. That's a record, I think. And high temperatures are starting to get up to about 80! Whew.
purpmartin
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purpmartin
- Posts: 40
- Joined: Wed Jul 18, 2007 1:49 pm
Hey, NH Cat Lady,
How have you been? You may not have seen my posting re: this one in another place on this site, so I'm sending you this. I found an NF-community-oriented web site! It's [url=http://www.inspire.org,]www.inspire.org,[/url] and the posts make interesting reading. The discussion re: sensitivities really hit home. Here are other people describing the same sort of problems that I have with "fragrances", noise, and light--AND they have NF! I feel like I'm on to something.
Last week I found an article in Google on NF and sleep disorders. It says that recent research found that the Nf1 gene does more than inhibit tumors; it's also necessary for cirdadian rhythm! So if the gene is mutated it doesn't just cause NF, it throws off the body's clock.
What an a-HA!!! moment! Have I got an explanation now for my alpha-delta anomaly?
purpmartin
How have you been? You may not have seen my posting re: this one in another place on this site, so I'm sending you this. I found an NF-community-oriented web site! It's [url=http://www.inspire.org,]www.inspire.org,[/url] and the posts make interesting reading. The discussion re: sensitivities really hit home. Here are other people describing the same sort of problems that I have with "fragrances", noise, and light--AND they have NF! I feel like I'm on to something.
Last week I found an article in Google on NF and sleep disorders. It says that recent research found that the Nf1 gene does more than inhibit tumors; it's also necessary for cirdadian rhythm! So if the gene is mutated it doesn't just cause NF, it throws off the body's clock.
What an a-HA!!! moment! Have I got an explanation now for my alpha-delta anomaly?
purpmartin
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purpmartin
- Posts: 40
- Joined: Wed Jul 18, 2007 1:49 pm