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Saw a new NF doctor

sweetiecat
0 Recommendations

Hi! I saw a new NF doctor at Children's Medical Center in Cincinnati. I was very impressed with him. He said we nfers are extra sensitive to pain because of our nerves. He was wonderful to me and respectful. I've been taking Avinza 30 mg for the past couple of years and it works fairly well and I have also been taking Motrin and Vicodin for break through pain. He added Tegratol it can used for pain, depression and seizures. It works on the central nerveous system. I'm willing to give it a try. If it takes away all of my pain, I will be so happy.
If anyone thinks a doctor isn't listneing to them, I suggest going to your nearest Children's hospital and make an appointment with the genetic's doctor who then will make an appointment with you to see a nf neurologist. They see adults too! Does anyone take Tegretol? for NF.. He also gave me a prescription for Vitamin D2 complex without calcium. I get kidney stones. He said there isn't a lot of study on it with the tumors but, some suggest Vitamin D2 will help supress the growth of the tumors (bumps) and help new ones not to develop. Thank you for thinking of me!

Explore topics in this discussion:

Surgery Motrin Seizures Vicodin Kidney stones Pain Tegretol Depression

16 replies

grammy615

. i go see a doctor next wk, i'm hoping he can do something for me, my family doc said that hes one of the best, we will see. i'm tired of hurting. the only thing is that i work at a factory, and i'm not going to be able to take much. we will see. my whole body hurts sometimes. i need to write down all that i'm getting off here and talk to him about it. take care and i'll let u know whats up.

sweetiecat

Actually the vitamin D is not vitamin D2 I was wrong. It is Vitamin D 50,000 btu? My insurance doesn't cover it and it cost $53.00 for 30 pills. I can't afford that. I would for sure write everyting down. I was going to do that and forgot. I wanted to talk to him about the twitching. I use to do it only at night but now I am doing it all the time? Do you experience that? Good luck and let me know how it goes..

krichards

Hi! We go to Children's in Cincy too although we see Dr. Schorry (lady). She is wonderful as well. Our little Evan is only 17mths and so far has no tumors. He will have another brain MRI in 6mths. I hope for the mildest case of NF for him. I don't ever want to see him in pain or needing surgery or chemo. I cannot imagine having to watch him suffer. He has so much spirit in such a little body - wise beyond his age. He also has such a compassionate heart already. He wells up in tears as he looks at pics of his brothers. I've always believed that children born with a disease seem to have "old souls". Anyway, I just wanted to say Hi.. How often do you go to Cincy? I would love it if these clinics would offer a patient "sign up" list. A list of patients interested in connecting with other patients with the same disorder. Why don't they do that???

Krystena
Mommy to Evan Riley 17mths NF1

grammy615

hi getting nervious about my appt. don't know what to expect. going to give him what i found on here. hope he gives me the time. take care talk to u later. have to work the weekend, and it 3 12hr. shifts so i'll try to get to u as soon as i can. thaks again.

noangel1987

I have NF1. I had no I idea that you can be prescribed medicine for dealing with pain. I had never been to a doctor about my NF. If I have pain I usually just pop some IBprophen and stay in bed till I feel better. Thanks a whole lot for sharing your story.

sweetiecat

You are so welcome. Don't lay in bed if you don't have too. There are all kinds of medications for pain. If your family doc doesn't feel comfortable in prescribing it go see a NF neurologist at a childrens Medical Center Hospital...... Go to www.nfinc.com there should be a link to find a NF doctor in your area.. that is how I got connected in Cincinnati. It really didn't take no time at all to get in. I just checked and I see you are in Texas there are several doctors there. I'm not sure where Wacco is. On the left side of the page is find a doctor just click on that then click on Texas. I think the Children's hospitals are best. Let me how you are doing, please?
Good luck and you don't have to be in severe pain the NF neurologist know we are in pain.... he explained why to me... very cool! Good luck.

sweetiecat

Grammy,

I am sure the neurologist can give you pain medication that you can function on. I take a narcotic but, I take the lowest dose possible and it doesn't make light headed or dizzy. And it works. Good luck and let us know how it goes. You don't have to be nerveous just be your self...this pain is not in our HEADS neither!!!!!!! There is hope with the right doctor.

sweetiecat

That's a good point. I don't go again for another six months either. Maybe we should say something to our doctors about it. Maybe they could post a list and have other sign up if they are interested... maybe for two weeks before you or I go down. (I go to the West Chester building). That is great idea!! What do you think about that? Maybe by late spring we could have a small group of adult patients and parents with children with NF.... That would be cool!!!

DonnaB78

I have nf1 and thank god i dont suffer with it although i have had two little lumps removed that last one being 20 years ago! Im hoping it wont progress like it can!! Im kind of frightened after reding some of the posts here!!

sweetiecat

Donna,

Don't be frightened. Many people live normal lives with NF and have no problems. I went for three months with no pain in my right leg it just started again a couple days of ago.

glen4cindy

I'm seeing an NF doc at the St. Louis Children's Hospital, but, I have to wait until FEBRUARY!!! And, I have been waiting for about 3 months already! He made it especially difficult to get in to see him. He will not see ANY new patient without a referral from a primary care physician, or another physician that has made a diagnosis of NF. He is supposed to be one of THE best NF doc's in the US, yet he will not see any patients directly! The problem with me is that at 42, I have had my NF diagnosis since 1st or 2nd grade. I don't have any medical records from that time peroid, and neither do my parents. My dad died over a year ago, so I cannot ask him WHO made the diagnosis, my mother does not know who did, so it made it especially difficult to get a referral. I was not aware that there were any treatment options available for NF, so I have just lived with the NF stuff, and aside from nearly constant headaches, my primary doc has never rendered any treatment for my NF. I have had early onset high blood pressure and tachycardia, but, I've had tachycardia since high school. My resting pulse even in high school and college was near 100. I never knew that tachycardia and HBP were symptoms of NF and could possibly be related to adrenal tumors, and my PCP never made the connection either, he just treated it with meds, which do a good job keeping it under control.

So, anyway, I am really looking forward to seeing this doc, as maybe he can do something about my headaches, and maybe even the HBP and tachycardia. I'd love to NOT take medication for those. This doc is supposed to be the best of the best, but, I still don't understand why he makes it so difficult to be seen.

[stepping OFF soapbox]

debburf

hey dont know if this will help. I am from that area and I have been to childrens and card. glen nf clinics. I really dont understand either so I stopped going. I have found out with a GOOD neuro dr and one who familar with nf can be just as good. I also have one, (I think) He can more or less tell you what or who you might need to see. Myself after putting my son what I had been doing I think is this is the best route. I am finally happy with my services.

zc1982

sweeticat,

Who did you see at Cinci? I have finally managed to get an appointment and will be seeing Dr. Weiss along with a geneticist. We are in the final preparation stages (had to get multiple records from the Cleveland Clinic).

sweetiecat

I saw Dr. Howard Saal and Dr. Darcy Kruger (his is male, dispite his first name)... Dr. Saal referred me to Dr. Kruger because of my pain issues. I saw them both at the WestChester hospital which is near Kings Island. North of Cincinnati.... but still considered Cincinnati Children's Hospital..

CindyLouWho

Glen, Is it Dr. Gutmann you are seeing? If it is then I think he may be taking limited patients because of his research. I swear, I can point to at least five MAJOR findings in the last 18 months that have his name on them. Not sure what he's like in terms of bedside manner but research-wise he's got more pieces of the puzzle than anyone. When it comes to NF, this guy's a rock star!

Cindy

sweetiecat

Wow, I'm gald to hear that! Dr. Krueger told me there will be a cure or treatment within the next 10 years! For thos of use hitting 50+ it might be a little late but for the kids wow... it is going to be great!

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