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Neurofibromitosis,headaches,recklinghausen disease

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General & Family Physician
Practicing since : 2007
Answered : 1337 Questions
Hi doctor. I am a patient of neurofibromitosis....I like to ask do all patients with nf1 have seizures and if can I tell....?
Posted Wed, 25 Apr 2012 in Brain and Spine
Follow-up: Neurofibromitosis,headaches,recklinghausen disease 9 minutes later
I also have painful headaches that are on the side of my head...sometimes all around. most of the time. it just hurts...I changed my diet completely. no more junk food. no more soda. I do drink orange juice,water,coffee and milk. For the tumors. I have them increasing over my body and the tumors can also be in my brain as well. but that cannot be detected unless I do an MRI. but I cannot afford it. because it's so expensive. it be impossible. The tumors do not hurt at all... but at times they can be painful and it's nothing I can really do about it. it's just the way it has to be. for my neurofibromitsosis. I like to ask about the seizures. my aunt did have seizures when she was young. since its my mom's sister. could it be possible I can also get them...? one of the symptoms of nf1... a.k.a Recklinghausen disease. that is the actual name for it. can you let me know if I should alert anyone of this..."JUST in case" and that way they won't be like..oh I was never told anything... I do volunteer work at my church and sometimes nervousness can cause a person to go into convulsion. i just like to be aware if i do have seizures. i like someone to be there and control my body so that it wont get to the point where i hurt myself worst.

thank you.
Answered by Dr. Mohammed Tauseef 2 hours later

Thanks for the Query.

I Would like to know few more things which would help me in suggesting you better:

1.) What is your Height? Are you short statured?
2.) Do you have curved spine? Are your Legs bowed?
3.) Do you have difficulty hearing?
4.) Do you have weakness in your Limbs?
5.) Do you have Epileptic Seizure episodes?

Your History suggests you have Nerofibromatosis 1, but get yourself examined by a Neurologist to rule out if you have Nerofibromatosis 2 or schwannomatosis, as you are having Pain. Because the schwannomas cause pressure over the nerves causing pain.

Only a MRI scan can confirm if you have NF 2 as it affects the eighth cranial nerve and schwannomas can develop any nerve in the body except eighth cranial nerve causing chronic pain.

Since you have been having pain, you can speak to your Doctor and get them removed through Surgery.

NF are known to cause seizures, but if you have had a seizure, you should be getting a MRI scan of head done after consulting your Treating Neurologist to rule out any space occupying lesion in your brain. Seizures result from the surges in electrical signal inside the brain leading to convulsions.

If you have a Family History of seizures, chances are that a close relative may have it but this is not true always as environmental conditions, developmental disorders, medical conditions also play a role.

It is always better a person takes better care of one's self considering family history of seizures. You can bring this to the notice of your family members, by speaking to them or through any reading material which you have collected from genuine sources.

If you happen to develop sezures,

1.) Get Immediate medical help
2.) Stick to your treatment plan and go for regular follow up
3.) Avoid stress, Practice relaxation techniques like yoga and meditation
4.) wear a medical alert bracelet
5.) Avoid alcoholism and smoking
6.) Get adequate rest
7.) Exercise regularly, avoid high calorie foods, eat healthy nutritious balanced diet which should include fresh fruits and XXXXXXX leafy vegetables
8.) Maintain a Healthy weight.

Hope I have answered your Query, I will be available to answer your Follow up Queries.

Wish you Good Health.

Take Care.
Above answer was peer-reviewed by
Follow-up: Neurofibromitosis,headaches,recklinghausen disease 16 hours later
Hi dr. thank you for responding

A curve spine? not sure what you mean by that. but I am 5'4....I am at a healthy weight and yes I am trying to stay off the high calorie foods. eating less. I do not have any hearing problems at all as far as I know. Sometimes at night I tend to shake but I feel it is me that is shaking...probably because I have difficulty sleeping. I was considering getting an eeg test. to check for seizures. the MRI is way out of my budget.

p.s- if you mean by curve spine...I do notice that one hip is slightly bigger than the other side. but if you need to know more about me. let me know.
Answered by Dr. Mohammed Tauseef 5 hours later

Thank you for writing Back.

Your follow up history is enough to say that you don't have any episode of Seizures. You are just anxious and this is the reason you have a lack of sleep.

Curved Spine is nothing but Scoliosis, which is a sideways curvature or bent of the spine towards the right or left side.

Since you don't have it, not to worry. I had asked you about this as it can also be found in NF patients.

Also you don't require a EEG, it is done only after you get multiple episodes of seizures.

Since you have Insomnia and anxiety, I would suggest you get yourself examined by a Psychiatrist so that he/she may examine you and prescribe anti anxiety drugs. Please do not get offended.

Follow the lifestyle changes which I had suggested you earlier, stick to your treatment plan and go for regular follow up. Avoid stress.

Wish you a very good health.

Take Care.

Above answer was peer-reviewed by
Follow-up: Neurofibromitosis,headaches,recklinghausen disease 7 hours later
I don't need a psychiatrist. I don't need a doctor insulting me when all I am asking are questions. I don't need drugs either. I don't even need you telling me I have insomnia. or anxiety . I was looking forward to even pay for this question now I am upset you have to say this. I gotta say I am offended.

I do sleep enough and I do not have any aniexty at all...Don't be telling me things like that.

I am not paying for this either. because I don't like being insulted.
Answered by Dr. Mohammed Tauseef 1 hour later

The answers were not meant to Offend or Insult you. It was a Medical Opinion which you had have had to correlate with your Treating Doctor.

I am Sorry, if you were Offended by my answers.

Thank you for visiting XXXXXXX

Wish you Good Health.
Above answer was peer-reviewed by
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