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Neurofibromatosis, delayed speech, painful tumors - Online Doctor Chats

Date : 21-Feb-2012
User rating for this question
Very Good Posted in: Brain and Spine
Answered by

General & Family Physician
Practicing since : 2009
Answered : 675 Questions
User :   Hi.
Doctor :   Hi
Doctor :   Please proceed with the query.
User :   I have a neurological disorder. not many doctors I know..not sure if they heard of it.
User :   Neurofibromitosis.
Doctor :   ok,
Doctor :   yes have heard of it, von recklinghausen disease
User :   Well I wanted to know that what tests would you recommend..?
Doctor :   Which one do you have NF 1 or 2
User :   Nf1.
User :   I have tumors....a lot...
Doctor :   so it is confirmed.
User :   I am not sure if I got it at birth. but just barely found out at 19.
User :   yes for physician examined me.
Doctor :   Ok, how old are you now.
User :   I am 21 now....
Doctor :   ok
User :   My first symptom was delay 3...than spots. than tumors...
User :   I do have to be born with it but it does not appear at birth...?
Doctor :   ok, now do you have any skeletal problems.
User :   What is that..?
Doctor :   yes any pressure on sleleton.
Doctor :   Sorry nervous symptoms.
User :   I am guessing I don't...
Doctor :   ok, that is good, have they done MRI
User :   no...he never told me to do any tests.
User :   none.
Doctor :   Since it is confirmed he has not done i guess?
Doctor :   It is very prominent.
User :   ...He never ever recommended me any such tests.
Doctor :   Do you have a lot of tumours.
User :   yes...
User :   stomach area.back arms.face
User :   everywhere
Doctor :   Ok, have they done biopsy.
Doctor :   Of the tumours.
User :   No no biopsy...
Doctor :   Are you on any medication.
Doctor :   How long are you seeing a doctor for this.
User :   depends...
User :   I seen him twice....he's my family phsyician.but I think I am going to have to change doctors.
Doctor :   Are you on any medication.
User :   I use ibruprofen for menstrual cycle. he prescribed it 400 mgs to me
User :   just for that cause
Doctor :   Ok, you need to get biopsy done on those tumours to see whether the turn cancerous, rarely they do.
Doctor :   ok.
User :   is that expensive ?
User :   how about the EGG test.
Doctor :   You dont have any pain due to it.
Doctor :   ECG is only for heart problems, i doubt they need this.
User :   for seizures?
Doctor :   No, you need EEG
User :   i did do blood tests in 2010. and he told me that everything was fine..
Doctor :   Waht problems are you facing now/
User :   can a regular doctor do that eeg test..?
User :   for the blood periods were coming twice a month and were out of a mess.
Doctor :   I guess a general physician can do.
User :   everything was normal though.
Doctor :   Do you have medical insurance.
User :   do they need to prescribe it to me and no i do not.
Doctor :   Yes they need to prescribe it to you.
Doctor :   From how long do you have seizures.
User :   okay..the nf1....
User :   at birth...i have to be born with it ?
Doctor :   yes, it is genetically transferred.
User :   is the mother alerted that her new born has it...or how does that work
Doctor :   yes, actually the mother should do tests whether her child has it or not in foetal stage
Doctor :   So did any of your relatives have it.
User :   I told my mom I must have been born with it.she said no...not even my uncles could tell me what were the tumors were and they're dr's.
User :   I don't believe so....
Doctor :   It can miss several generations and come, or it might have just be a salient (carrier)gene which surfaced in you
User :   the reason I want to do the seizure test is I need to obtain my license and so I want to make sure I don't have them. or else I cannot drive.
Doctor :   Yes, you can go ahead and do it with GP consultation.
User :   whats a gp consultation
User :   ohhh
Doctor :   You mean the cost?
User :   oh yes
User :   is that expensive..? te eeg
Doctor :   No, its not.
User :   no insurance...
Doctor :   It is minor test. It is there on your face right ?
User :   one tumor...
Doctor :   Ok, but since you need it, you need to get it done.
User :   the newest one...age 19 I got that one..
Doctor :   Have you considered surgery.
User :   I might change physicians.
User :   I am not sure...about surgery.
Doctor :   ok, you can get the tumours removed by surgery.
Doctor :   You have no back problems too?
User :   How many more mins do I have...? I actually have more questions.
Doctor :   You can keep asking till the timer comes.
User :   it aches sometimes.but it doesnt bother me
Doctor :   ok,no bending or spinal curve.
User :   For menstrual there a medication that make it less painful...?
Doctor :   You really need to do some things.
User :   Well what kind of things.. ?
Doctor :   You will have to go a neurologist and get biopsy done to see whether they are cancerous ot not, How many do you have?
User :   well how they look like is they're noticable...but ppl don't see it...but I can see them.
Doctor :   ok, not so big.
User :   they're very small and I can see the lumps on my arms but slightly very small.literally.
Doctor :   How many mm or cm.
User :   no not at all...i have to big ones. one on my under my knee
User :   never measures them.
Doctor :   Ok, but once you show it is good so that it doesnt turn cancerous.
User :   Is a biospy expensive
Doctor :   Yes slightly.
Doctor :   You can take midol for your menstural problems.
User :   I mean he examined the tumors and he would have to at least said something about it.
User :   midol is not strong for me.
User :   I tried the ibruoprofen and it makes me I haven't used it lately.
Doctor :   ok,
Doctor :   pAmprin
Doctor :   You can try it.
User :   Now if I were to change doctors...should I let him know about nf1...?
Doctor :   Yes,
User :   or let him examine me...first.
User :   I may think he will do the test on me...I just don't understand why he never let me do tests.
Doctor :   Better let him examine first, only a internal medicine or neuro physicain can guide you better.
User :   and see if he can tell me what it is...?
Doctor :   ok, what kind of speciality is your doctor?
User :   phsyician. regular doctor
User :   I have no neurologist.
Doctor :   ok.
Doctor :   You can go to internal medicine or neurophysician.
User :   can I end this session and come back later or no.
Doctor :   Regular doctor wont know .
User :   I kinda wanted to ask my doctor to prescribe me birth control so that my period won't come... is it needed to be coming..?
Doctor :   But you have paid for this session, i dont think you can continue with this?
Doctor :   Yes , why do you want to stop periods.
User :   it just stresses me out.... a lot.... with school.
Doctor :   Yes, but it will affect your body by using such hormones.
User :   is there a low dose...?
User :   the lowest possible.
Doctor :   It will affect you tomorrow regarding kids, you can postpone it for few days.
User :   no kids for me.
Doctor :   Ok, you need not take a decision so early regarding this.
User :   I decided....none.
Doctor :   Nothing is impossible, your disease wont affect your kids
User :   session is about to end.
Doctor :   if you do tests durng pregnancy
Doctor :   yes i know.
Doctor :   Kindly login for further medical queries
Doctor :   Hi
User :   hi
User :   I really am not up to having children....
Doctor :   You might change your mind later.Anyway you can speak to your GP about it.
Doctor :   So first clear your present problem.
Doctor :   Regarding menstural pain , reduce your salt and spice content of food few days prior to your periods.
Doctor :   Drink lots of fluids and avoid legumes and diet sodas.
Doctor :   This causes acidity and pain during foods.
User :   What would I eat...?
Doctor :   Try to exercise as much as possible.
User :   what helps for me is eating some breakfast and taking meds...and I tend to ignore it and it goes away within a day...
User :   it lasts one day
Doctor :   food like wheat, rice, brown bread, vegetables
User :   maybe 1-2 days.
User :   my cycle is 5.
Doctor :   Take medicines for pain just during the start of the pain, so it stops completely, not when the pain increases.
Doctor :   ok
Doctor :   Avoid all artificial sodas or coloured food, canned food, pickled fruits.
Doctor :   Atleast few days prior to periods.
User :   I just can't tell when it's coming thats.the thing.
Doctor :   You know your exact date right?
User :   for last month.yes/
User :   it doesn't come the same time.
User :   it's kinda all over.
Doctor :   So do you after every 28 days.
User :   yes it comes every month..
User :   but how do i count it from there.
Doctor :   That is every 28 days, if you know your periods date add 28 days to it.
User :   june was. 20-25. ?
User :   so I would count 28 days from there?
Doctor :   yes when was it on may
Doctor :   MAy?
User :   i have 24th-29th
User :   so its kinda all around
Doctor :   Ok may 24
Doctor :   Add 28 days to it.
Doctor :   If possible just add it.
User :   52?
Doctor :   i mean on the calendar
User :   oh....
Doctor :   does it come to june 24
User :   june 25?
Doctor :   okso you have 29 day cycle
Doctor :   So every 29 days you get it
User :   i started with the may 29th and counted.
Doctor :   no staryt with may 24
User :   oh okay.. i seee.
User :   i got to june 20th
User :   thats right
User :   so the day i start..i would just count 28 days from there and onto the next month?
Doctor :   so
Doctor :   yes
Doctor :   just see how amny days gap between may 24 and june 20
Doctor :   So that would be your monthly gap
User :   so i go june 20 and count 28 days?
User :   i got july 17
Doctor :   ok
Doctor :   fine
Doctor :   Your cycle is 27 day
Doctor :   so you got on june 20 so add 27 days
Doctor :   yeah correct
Doctor :   You there.
User :   sometimes its all around..doesn't come exactly
User :   they dont come the same.
Doctor :   So you can take pain tablet one day before.
Doctor :   it just differs by half a day or one day, but most of the times it is correct.if you are under stress or travelling it might come early.
Doctor :   ok,so dont worry, be happy.
User :   can I take it everyday in advance ?
Doctor :   Take it one day before what you have counted and make diet modifications.
Doctor :   It will alright.
User :   yes of course.
Doctor :   It works hundred percent.
Doctor :   So dont tension, life has ups and down.
Doctor :   TAake care
Doctor :   kindly login for further medical queries
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