It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-05-2009, 11:08 PM   #1
Member
(female)
 
Join Date: May 2005
Posts: 72
pleasantville HB User
Just diagnosed with ppms lousy doctor

I have had many symptoms for many years but didn't have the insurance, until recently for all the tests. Went to the only neurologist in my city and had an mri and spinal puncture. Two lesions (one in brain and one on upper neck) and five bands in cpf from spinal tap. The doctor just looked down at the results and said "oh no, this is bad" i nearly fainted. He said you definitely have ms. I had researched it extensively. I asked him which kind i had and he said probably secondary or primary progressive without ever asking about my symptoms over the years. He then said i am going to put you on copaxone which probably won't help you as it is only approved for treatment of rrms but it can't hurt. He then said he was going to diagnose me with rrms so my insurance will pay for it. Isn't that fraud. This guy had the bedside manner of frankenstein. I decided not to take the copaxone and am wondering if i should get a second opinion. I am going to get a walker tomorrow as i recently had a bad fall. Any opinions>

p

 
Old 12-06-2009, 04:58 AM   #2
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,692
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Just diagnosed with ppms lousy doctor

Yes P- a few comments. First, where are you?? Are you in the US? If so, there are thousands of Neurologists who can help you. Secondly, no matter where you are in the world, the MS Society is reachable and if you talk to them, either online or by phone- they will help you as well.

It is EXTREMELY UNCOMMON For anyone to have secondary or any of the more progressive forms of MS right from the get go of diagnosis. Possible, but very uncommon.
85% of people have R/R MS and the other 15% are usually reserved for cases which have been treated for years and have not responded to the drugs, and have progressed anyway. The fact that you have only 3 lesions, DOES NOT SUGGEST ANYTHING MORE THEN RELAPSING//REMITTING.

If it makes you feel any better, I have over 50 lesions, and still have R/R and take Rebif for it. Since my dx, almost 4 years ago, Ive been on Rebif, and havent had a single additional lesion or relapse...

You sound a bit panicky...and hearing that you have MS will do that to you; however MS is quite manageable. It isnt life changing other then to force you to pay attention to your body and make sure you eat right, rest properly and of course have a good physician to guide you thru the rough patches. You said you live in a city....I guarantee that there are other docs you can get a second opinion with. And, if there is only ONE (hard to believe) in your entire city who accepts your insurance, do yourself a favor, call the insurance company and demand that they get you a second opinion from an out of network doctor. They cant refuse you a second opinion.

Please try to relax and remember that this is your health and you have options....also, call the MS society. They can get some help for you as well.

Take care. And, stay calm.
Nikki
__________________
RRMS- dx 05

 
Sponsors Lightbulb
   
Old 12-06-2009, 06:54 AM   #3
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,362
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Just diagnosed with ppms lousy doctor

Whether it is PPMS, RRMS, or whatever MS, it is not bad. Yes, I have fallen quite a bit over the years, but I always keep on keeping on.

The doctor's bedside manner could use a shot of human kindness and a 200% solution of "tact", but that is the past and this is your new day. I will definitely keep you in my prayers.

I have been dealing with MS for 32 years (since I was 14). I am still walking- a blessing- one day at a time, one step at a time. You are still the same person you were prior to the doctor's diagnosis. The only change is that now you are aware.

Please know that you will have good days and bad days, but you need not ever feel you are alone in your battle. Come to this forum and seek solace, advice, prayers or just vent. You are a member of the MS family, not a lone person.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 12-07-2009, 12:12 AM   #4
Member
(female)
 
Join Date: May 2005
Posts: 72
pleasantville HB User
Re: Just diagnosed with ppms lousy doctor

i am originally from Manhattan (NYC) but my brother moved me to the boonies in McMinnville, Oregon 7 months ago where he lives because i was too ill to work and was about to become homeless. I am currently on SSI disability, food stamps and in disabled subsidized housing. I do believe i have ppms as i have just been getting progressively worse for the past 7 or so years and have all the symptoms of ppms. can barely walk, balance issues, numbness in all extremeties, neck and back pain, etc. i am also 62 years old which i know is kind of old for MS. i never had "attacks" that went away or returned. i also have diabetes and before this MS diagnosis was diagnosed with everything from "drop foot", degenerative disc disease, diabetic neuropathy, myelopathy etc. and yes, there is only ONE neurologist in this city and since i am on medicaid, many neuros in surrounding cities aren't taking new patients or won't accept medicaid. I will keep trying to find another doctor and thank you for responding. i am very scared

p

 
Old 12-07-2009, 05:42 AM   #5
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,692
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Just diagnosed with ppms lousy doctor

P, I suggest you contact the National MS society who will put you in touch with support in your area. Im sorry to hear of your issues- youre very lucky to have a brother who is able to help you. Although Oregon might feel like the boonies right now, the clean air and simpler life (I live outside NYC) will probably be a blessing, compared to the hustle and bustle of trying to navigate the city life....
I send you warm thoughts and positive outcomes...
Nikki
__________________
RRMS- dx 05

 
Old 12-07-2009, 07:48 AM   #6
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,362
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Just diagnosed with ppms lousy doctor

I think that you can consider yourself fortunate to have your brother come to your assistance. The more even climate of Oregon should help as well. As Nikki said, your local MS chapter can assist you. If not, please contact your state health department for assistance. Here in Kansas the state will even provide a ride to and from your neuro if you cannot drive. Check with Oregon's state govt. 62 is not too old for MS!! Because you live alone, I would suggest a service dog. Many states will assist with the dog food costs. Your service dog can be your companion and assist you in doing various tasks around the house. I have a service dog and would recommend them to all disabled persons.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 12-07-2009, 08:03 PM   #7
Senior Member
(female)
 
Join Date: Aug 2008
Location: Port Deposit, MD, US
Posts: 117
tinabean34 HB User
Re: Just diagnosed with ppms lousy doctor

Can I please ask again what makes this so hard to diagnose and why is it taking years to the point to where some people on here are diagnosing themselves. I would like a doctor to give me a yes or no it has been a maybe hanging over my head for 2 years. I don't get it and since everything is just getting worse. I feel like I am fading away slowly and because i don't have a definitive diagnosis everyone in my family and my friends look at me like I am attention seeking???? GOD I WANT THIS NIGHTMARE TO BE OVER!

 
Old 12-07-2009, 08:36 PM   #8
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,362
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Just diagnosed with ppms lousy doctor

Tina, I wish you had a diagnosis. Believe it or not, it is getting easier to diagnose MS, BUT because MS affects each of us differently, that variable can cause a diagnosis to remain elusive. Couple this with the litigious nature of the society in which we live. That is, doctors want to make absolutely sure as to your condition. Too many doctors have been sued due to misdiagnosis.

Two years is a long time to wait. We cannot self diagnosis, but we can "know" and that self-knowledge brings us to the neurologists. If you are tired of waiting, you might ask your neuro what evidence he is waiting on or you might ask when you can expect an answer. Does your neuro deal with MS patients? If you are dissatisfied, you might wish to seek out some fresh eyes to review your data.

MS has many variables and many symptoms which are mimicked by a plethora of other diseases. The task is daunting, but hopefully you will get a diagnosis. You are in my prayers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
balance issues, foggy, just not "right" - help. JacksonHole Brain Tumors 26 07-23-2010 11:01 PM
Just diagnosed with MS need some help Rem4 Multiple Sclerosis 21 03-25-2009 11:51 PM
Just confused and need some good advice Delia79 Thyroid Disorders 4 03-25-2009 05:36 AM
Back From Neuro, Says i have PPMS Roadworker Multiple Sclerosis 10 10-28-2008 10:30 AM
Well got my Final Dx from Neuro Today .. Says PPMS Roadworker Multiple Sclerosis 9 08-08-2008 06:16 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (985), MSNik (520), Snoopy61 (58), Whimpurr (13), J-one (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), Gullyabb (8)

Site Wide Totals

teteri66 (1162), MSJayhawk (990), Apollo123 (890), Titchou (825), janewhite1 (823), Gabriel (757), ladybud (736), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 07:59 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!