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Do I Need To See A Neurologist?


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#1 Linna

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Posted 27 August 2010 - 09:58 AM

After you are DX with N, which Type of Doctor is best to treat N? Is a nurologist necessary? Or would a sleep specialist be better?
or is this something a regular physician can treat?

#2 MMK

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Posted 27 August 2010 - 10:11 AM

Best person education wise will be Neurologist specialized in sleep. Senior Neurologist are also good, Psychiatric also treat sleep disorder.

I have read that very few Dr. get opportunity to treat Narcolepsy so they ignore Narcolepsy related study , very few show interest in Narcolepsy studies unless until they have patient for same.

So better thing will be you try to tell which area you stay and search in this forum / facebook whether any Narcolepsy patient are treated in your area. If you get you will have two opportunity one you will get friend and second you will get experienced Dr. who is treating Narcolepsy patient already .

#3 Saraiah

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Posted 27 August 2010 - 11:54 AM

After you are DX with N, which Type of Doctor is best to treat N? Is a nurologist necessary? Or would a sleep specialist be better?
or is this something a regular physician can treat?


Hi Linna! This is a long answer to a simple question, but unfortunately finding a good doctor can be challenging. Hopefully these steps will easily lead you to someone good right away.

Although both of the sleep specialists I've seen have been neurologists, physicians in other specialties can also get certified in sleep medicine too. It seems to me that there are 2 criteria for finding a doctor who will know about how to treat a person with narcolepsy:

1) the doctor should have sought out special training in sleep medicine and then passed a test to demonstrate that they know the subject well (and thus has gotten certified in sleep medicine); and

2) the doctor should have some experience in actually treating patients with narcolepsy.

It turns out that sleep disorders are covered in most medical school training (and also in the training of psychologists, neuropsychologists, and psychiatrists) for about 2 minutes, and so most physicians of any stripe can't differentiate between narcolepsy and your big toe. So you'll save yourself untold grief if you find a doc who's actually been trained and then gotten experience in treating narcolepsy. If you've gotten diagnosed with narcolepsy through a sleep study, you might try asking the people running the sleep lab whether they can refer you to a physician with expertise in treating narcolepsy.

If the sleep center isn't helpful, here's how to find a sleep medicine certified physician when you (or whoever the patient is) are a teenager or adult:

1) The American Board of Psychiatry and Neurology has certified neurologists and psychiatrists in treating sleep disorders since 2007. They've got a terrific website in which you can look for certified docs, and the database is sortable by physician's name, or city, or state, etc. Go to their home page at http://www.abpn.com/ and click on “ABPN verifyCERT® Status Verification System,” which is at the top right-hand corner in an olive green bar. On the next screen, do a search by specialty/location, and then select the specialty of "Sleep Medicine." If that doesn't yield any doctors in your area, try #2:

2) The American Board of Internal Medicine has certified physicians in sleep medicine since 2007 as well. They've got a less helpful website, because you can only search by the doctor's name (http://www.abim.org/). Since so few internists are certified in sleep medicine, it may be more expedient just to call this board at 1-800-441-2246 to ask whether there's a sleep medicine certified internist near you. And if you still haven't found a doc, try #3:

3) The American Board of Family Medicine has also certified family medicine docs in sleep medicine since 2007. Go to https://www.theabfm....omate/find.aspx to search for sleep medicine certified doctors in your state or city - but be aware that there are not many. And if you're still searching, try #4:

4) The American Board of Sleep Medicine has a list of physicians who were certified in sleep medicine between 1978 - 2006. The list is at http://www.absm.org/...tes/listing.htm and is ordered by last name. But BE CAREFUL if you're picking a doctor from this list who has not been certified by one of the first 3 organizations above. Unlike the first 3, the American Board of Sleep Medicine never requires their certified physicians to get ANY further training in sleep medicine after they pass the test. If the physician was sleep medicine certified prior to 2005, it's possible that s/he has little knowledge or experience in treating narcolepsy with Xyrem, and may not have knowledge/experience with Provigil/Nuvigil if certified prior to 1998. I had a bad experience with a doctor who was certified by this organization back in the 1980's, who told me (among other things) that narcolepsy was NOT an autoimmune disorder well after we all knew that it was.

After you find a sleep medicine certified physician, you might want to call his/her office and ask 1) how many patients with narcolepsy has this physician treated, and 2) what are the medications that this doctor has used in treating narcolepsy. If the doc has treated no or very few people with narcolepsy, you might want to go elsewhere; and if the medication list doesn't include both Xyrem and Provigil/Nuvigil as options, definitely try somebody else.

Good luck!

Saraiah

#4 MMK

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Posted 27 August 2010 - 05:28 PM

It happen my first Dr. concluded diagnosis and kept quite and I caught him.(It is different story he was taking my care on personal level after my parents demise)

I sincerely found except one Neurologist (who had almost 50yrs of experience practicing) nobody was even good.

With time and further study I concluded every person I met after first Dr. just misguided me (Only good thing which took place I took medicine of first Dr. and still I am continuing)

I came across Neurologist saying you refer to Psychiatric and Psychiatric saying you refer to Neurologist, Sleep specialist please don't ask which question he asked as they were pulmonologist .

#5 veillettecathy

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Posted 27 June 2012 - 10:07 AM

I have found every Neurologist to be egocentric and not willing to accept research/knowledge or assistance from leading researchers in the field of Narcolepsy, these Neurologists I am speaking of were from Maine and were referred as "Narcolepsy Experts" 4 in all. Another interesting visit to a Neurologist was in Florida when I was sent to for treatment, I was charged $200.00 for the initial visit which should of been cancelled by his office as my primary care doctor's office staff forgot to send my 4 inch pile of multiple sleep studies and 2 different positive HLA results which all my sleep studies showed the same pattern of less than a minute to sleep but since he had nothing to go by except my word I had to rebook and pay $168.00 for 2nd visit in which he prescribed Dexedrine 60mg. ( I had been on 90mg) but he then stated " I have never treated Narcolepsy/Cataplexy, I treat strokes,Dementia,Epilepsy I am going to send you to a Neurologist who is a "expert" in treating Narcolespy and he has a brand new sleep lab,MRI etc" I informed him I refuse to have any more sleep studies as I have had 12 in all which are similiar 0.5 seconds to sleep to 1.5 minutes to sleep and I am tired of being made to contribute to these "experts" new sleep labs as I have been intimitaded too may times " If you do not have this study I will not treat you, I know you have no in surance but you can make a payment plan with our business office" When I ask why I need another test even though I have been diagnosed for years with N/C the responce is " Every Neurologist likes to read their own studies" I feel patients with Narcolespy are the most misunderstood and they are treated with distain by most providers due to the drugs that allow them to have some quality to their lives. I feel Narcoleptics know more about their disorder and what medications work and what does not but try to tell that to the "Experts" they are totally turned off if a patient tells them the chronic pain they suffer is increasing your cataplexy and worsening hypersomnia but your primary care doctor refuses to abide by the pain expert you just saw and she suggested Oxycodone as your spinal cord is compressed from the disc bulging in the back of your neck but the 3 disc and metal plate in the front you had replaced 2 years ago is still in place but you need to be seen by a neurosurgeon again) from multilpe auto accidents some I totalled my brand new vehicles, the falls the fractures which all stem from inadequate or no medical treatment for hypersomnia or cataplexy. I am so incapacitated by my N/C and pain and so frustated at our medical community and how they treat patients. Any provider like I mentioned needs to be reported to the Medical board for negligence,incompetence and threatning patients to have unwarrented test. My only good experince was with a Pulmologist but he has retired..

I also feel Narcoleptics should be offered case management in which I have been trying to obtain and asked my primary care doc but it never gets anywhere it is like I am talking to a wall..

Another issue is with these Experts I was prescribed Xyrem this Neurologist sent it to the local pharmacy on 5/31/2012 which I knew had to come from Jazz but what does a patient know?? So my husband had to make 3 trips to town to pick up the Rx at pharmacy and also he wrote the Dexedrine incorrectly as 60 mg capsules every AM ( they come in 5,10,15 mg Spanules) so the expert had to rewrite that which was dated 5/31 but I never got it til 6/7/2012 after running out for over a week due to his error!! the Xyrem I faxed to Jazz on the 6th after calling them I heard nothing so I called Jazz on the 20th and my Expert still has not enrolled in the Xyrem program...this is after they called him to tell him what he had to fill out and send!! It is the 27th today and I have no idea if he enrolled or not.. Nor did this expert give me info or a CD on Xyrem!
This is the crap I have been going thru for years and I am fed up but we have no options out there to assist patients like myself that have become so disabled by this disorder..

I will add I have never abused my medications or doctor shopped and I feel the drug abusers have a real impact on adequate treatment..

Lastly the miracle drug Provigil is no miracle it put me to sleep I feel Provigil and Nuvigil are maybe okay for mild Narcoleptics but not helpful for someone like myself or my son who was diagnosed 3 years ago.. Sorry for the ramble but I had to speak of my nightmares of trying to get adequate competent treatment for years.. We need someone to help advocate for the type of care some of recieved..

Cathy Anderson

#6 Christina G

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Posted 10 September 2012 - 06:13 PM

Hi Cathy,

I saw your post about a support group in another forum - glad you see you are still on the forums.
Did you ever find a support group in Florida assuming you are still here? Do you have any interest in getting one going? I am over in the Gainesville, FL area.

- Christina Graves

I have found every Neurologist to be egocentric and not willing to accept research/knowledge or assistance from leading researchers in the field of Narcolepsy, these Neurologists I am speaking of were from Maine and were referred as "Narcolepsy Experts" 4 in all. Another interesting visit to a Neurologist was in Florida when I was sent to for treatment, I was charged $200.00 for the initial visit which should of been cancelled by his office as my primary care doctor's office staff forgot to send my 4 inch pile of multiple sleep studies and 2 different positive HLA results which all my sleep studies showed the same pattern of less than a minute to sleep but since he had nothing to go by except my word I had to rebook and pay $168.00 for 2nd visit in which he prescribed Dexedrine 60mg. ( I had been on 90mg) but he then stated " I have never treated Narcolepsy/Cataplexy, I treat strokes,Dementia,Epilepsy I am going to send you to a Neurologist who is a "expert" in treating Narcolespy and he has a brand new sleep lab,MRI etc" I informed him I refuse to have any more sleep studies as I have had 12 in all which are similiar 0.5 seconds to sleep to 1.5 minutes to sleep and I am tired of being made to contribute to these "experts" new sleep labs as I have been intimitaded too may times " If you do not have this study I will not treat you, I know you have no in surance but you can make a payment plan with our business office" When I ask why I need another test even though I have been diagnosed for years with N/C the responce is " Every Neurologist likes to read their own studies" I feel patients with Narcolespy are the most misunderstood and they are treated with distain by most providers due to the drugs that allow them to have some quality to their lives. I feel Narcoleptics know more about their disorder and what medications work and what does not but try to tell that to the "Experts" they are totally turned off if a patient tells them the chronic pain they suffer is increasing your cataplexy and worsening hypersomnia but your primary care doctor refuses to abide by the pain expert you just saw and she suggested Oxycodone as your spinal cord is compressed from the disc bulging in the back of your neck but the 3 disc and metal plate in the front you had replaced 2 years ago is still in place but you need to be seen by a neurosurgeon again) from multilpe auto accidents some I totalled my brand new vehicles, the falls the fractures which all stem from inadequate or no medical treatment for hypersomnia or cataplexy. I am so incapacitated by my N/C and pain and so frustated at our medical community and how they treat patients. Any provider like I mentioned needs to be reported to the Medical board for negligence,incompetence and threatning patients to have unwarrented test. My only good experince was with a Pulmologist but he has retired..

I also feel Narcoleptics should be offered case management in which I have been trying to obtain and asked my primary care doc but it never gets anywhere it is like I am talking to a wall..

Another issue is with these Experts I was prescribed Xyrem this Neurologist sent it to the local pharmacy on 5/31/2012 which I knew had to come from Jazz but what does a patient know?? So my husband had to make 3 trips to town to pick up the Rx at pharmacy and also he wrote the Dexedrine incorrectly as 60 mg capsules every AM ( they come in 5,10,15 mg Spanules) so the expert had to rewrite that which was dated 5/31 but I never got it til 6/7/2012 after running out for over a week due to his error!! the Xyrem I faxed to Jazz on the 6th after calling them I heard nothing so I called Jazz on the 20th and my Expert still has not enrolled in the Xyrem program...this is after they called him to tell him what he had to fill out and send!! It is the 27th today and I have no idea if he enrolled or not.. Nor did this expert give me info or a CD on Xyrem!
This is the crap I have been going thru for years and I am fed up but we have no options out there to assist patients like myself that have become so disabled by this disorder..

I will add I have never abused my medications or doctor shopped and I feel the drug abusers have a real impact on adequate treatment..

Lastly the miracle drug Provigil is no miracle it put me to sleep I feel Provigil and Nuvigil are maybe okay for mild Narcoleptics but not helpful for someone like myself or my son who was diagnosed 3 years ago.. Sorry for the ramble but I had to speak of my nightmares of trying to get adequate competent treatment for years.. We need someone to help advocate for the type of care some of recieved..

Cathy Anderson



#7 veillettecathy

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Posted 08 October 2012 - 02:07 PM

Hi Cathy,

I saw your post about a support group in another forum - glad you see you are still on the forums.
Did you ever find a support group in Florida assuming you are still here? Do you have any interest in getting one going? I am over in the Gainesville, FL area.

- Christina Graves




#8 veillettecathy

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Posted 08 October 2012 - 02:08 PM

Hi Cathy,

I saw your post about a support group in another forum - glad you see you are still on the forums.
Did you ever find a support group in Florida assuming you are still here? Do you have any interest in getting one going? I am over in the Gainesville, FL area.

- Christina Graves




#9 veillettecathy

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Posted 08 October 2012 - 02:09 PM

Hi Cathy,

I saw your post about a support group in another forum - glad you see you are still on the forums.
Did you ever find a support group in Florida assuming you are still here? Do you have any interest in getting one going? I am over in the Gainesville, FL area.

- Christina Graves




#10 veillettecathy

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Posted 08 October 2012 - 02:24 PM

Thanks for responding to my frustrations of dealing with trying to find a good doctor who is competentent in treating this disorder as it has negatively impacted my life for sure and my ability to work as a RN, Yes I am in Ocala,FL , we got here 1 week ago but again I got to look for someone to continue with Xyrem and high doses Dexdrines or change me to Desoxyn .. Any good doctors that are in Ocala area or near would be great as I need someone that will work with the patient. I also have pain issues that SIMED want me to go to UF Shands Gainsville ( how are they???) as I had all those auto accidents, falls, fractures . than the 2009 anterior cervical discotomy with 3 cadevaer discs and plate but MRI in Ocala showed cord compression with bulging in back, yes I am a mess for sure from years of misdiagnosis, undertreated or not treated and the 12 or less auto accidents the last being last year so my husband drives me..My husband is also going back to Maine Oct 21 to Dec 2 for hunting so I will be left to drag myself to where ever I have to go carefully and knowing the best time to do it or stay put at home. I am really out in Ocklawaha .

Any help would be grateful

Cathy Anderson

#11 veillettecathy

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Posted 08 October 2012 - 02:49 PM

yes i would love a support group as MAINE never had one or had any options for Narcoleptics that is why I joined NN as they have been wonderful even though I was so far from anyone that could relate to what it is like to live with t

his disorder, I just wish I was feeling better and not in bed as much and dealing with this pain that seems to put me in bed .. CRAZY Is there one here near Ocala?? Thanks

#12 veillettecathy

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Posted 08 October 2012 - 03:10 PM

After you are DX with N, which Type of Doctor is best to treat N? Is a nurologist necessary? Or would a sleep specialist be better?
or is this something a regular physician can treat?


My preference is Pulmologist but that is because any Neurologist I have been to have large EGO's, and Pulmologist deal with respiratory issues and breathing issues and they want the patient to have a quality of life as not being able to
breath is not sent although this is not a Narcoleptic or Cataplexic issue I just feel they care more for how the patients functions in all parts living and if the medical treatment helps the patient have some quality to there life they are okay with it and the 2 Pulmologist I saw in MAiNE used to say to me " Medical Science is not exact science and if this works and you are able to function I have no problem" This was at the start of my narcolepsy that I had since teens but it worsened after my hysterectomy/ovaries removed At 29 y.o. and I was on a low dose Ritalin or Concerta and working 60/week my big downfall was when I listened to my primary provider who suggested I be seen closer to my home VS 40 miles and to a new Neurologist in Bangor area it was all downhill from there and multiple sleep studies then I went to others who proclaimed "Narcolepsy" Experts in MAINE.. Beware of any specialist who boost himself as a Specialist or all to know about Narcolepsy/Cataplexy treatment ..Thses docs in my opinion are too conserative and narrow minded and there is not even Stanford University Narco;epsy Research that could get threw to these big egoed over paid docs..
I also would prefer a psych over neurologist.. If a doctor allows you to hurt yourself, get into accidents and says " well it was just a little rearender and no one was hurt" refuses to treat your N or C appropriately according to Stanfords recommendations not the PDR guidelines!! Then get another doc fast