Hi my name is Kathy. I just joined today... - My MSAA Community

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Hi my name is Kathy. I just joined today. This looks like a great community of supporters.


I was diagnosed in 2005 but had it for several years prior. The neurologist diagnosed me with an MRI. The first thing she said to me was, "MS IS A PROGRESSIVE DISEASE, IT DOES NOT GO AWAY." She treated me until December 2012, at which time she said, "make sure you keep all your MRIs because the medication your on (Copaxone) masks the signs of MS and insurance will try to say you no longer have MS." I didn't realize she was telling me I was about to lose my insurance (3 days later). I had AHCCCS Medicare through Arizona. I tried to get it back all of 2013 to no avail. All I got was the runaround. I got insurance in March 2014 when I was hospitalized with bilateral pneumonia. I got AHCCCS Medicaid. I was sent back to the same neurologist and the first thing out of her mouth was, "WE DON'T EVEN KNOW IF YOU STILL HAVE MS." I have been to several doctors after her and they say I don't have MS, they refuse to look at the 7 years of MRIs that show I have MS, they refuse to do the spinal test, and they are trying to tell me I have epilepsy. I HIGHLY ADVISE ANYONE THAT HAS INSURANCE LIKE AHCCCS TO INSIST ON HAVING THE SPINAL TEST DONE AS WELL AS THE MRIs SO YOU DON'T EVER HAVE TO GO THROUGH WHAT I'M GOING THROUGH IF YOU EVER LOSE YOUR INSURANCE. I actually just found out this year that they were not even supposed to take my insurance away at all. I can't even get any help from anyone. Newspapers, or t.v. stations will help, and I have tried a lot of other people and no one will. I don't know what to do any more.

23 Replies

I'm sure you've probably tried this, but each state should have state board of ins.. that may offer assistance. Welcome to the group, I'm fairly new here myself. By nature, I tend to document all medical records and agree with you to save records and get MRI's put onto disks. I've had 4 mri's since July and 2 neuros. Just diagnosed in August, but 2nd Neuro wanted a more definitive mri so just recently had MRI s of brain, cervical and thoracic spine, spinal tap last week.. back to you, definitely check out all of the MSAA website. They may have good suggestions for you. The people on here may have suggestions for you also.. sure hope you get some help. Lynn

I just went through the same thing with a new neurologist. 3 MRIs and another LP 2 weeks ago. He diagnosed me with... ms. I'm losing my job (out of FMLA) and going on my husbands insurance. At least the new insurance won't question the diagnosis. Good luck to all of us with MS and dealing with insurance companies.

Hi Kathy, I know you have maybe already been on the Medicare web site, if not if you pump in to medicare.com and then epilepsy and ms, it shows you about the connection between ms and epilepsy. According to them there is a strong connection between the 2 conditions, so I would keep pursuing it. Like CalfeeChick said, the MSAA should be able to help. Let us know how you get on, cheers Jimeka. Just wondering, are you having lots of seizures because if not why do they think you have epilepsy ?

@74ChargerKat, I'm surprised that a neurologist told you Copaxone masks the signs of MS. I'd like to know where that idea came from because I've never heard of it in spite of many years of keeping an eye on the research, particularly with Copaxone because I was on it for 3 years. She may have meant that by preventing many new lesions from forming, Copaxone might make your MRI look better than it would have without the Copaxone. That isn't exactly "masking," IMO.

You need to evaluate your experience and your medical records and figure out how likely it is that you have epilepsy in addition to the previously diagnosed MS. There may be treatments for epilepsy that would help but there's no point in taking them if you don't have epilepsy.

If you have a good primary care doctor, maybe laying out the facts to him/her will help you. That doctor might be able to steer you to a neurologist who will address your problems based on your history and test results.

Most states have case managers who can lead people through the Medicaid maze and help with solving problems. If you haven't already done this, make a few calls to the state aging and disability services or social services department (different states have different names but it's the agency that administers Food Stamps, Medicaid, and other benefits). Sometimes you have to persist and keep making calls and filling out forms and being put on hold and transferred to other departments but if you keep at it, you can probably find someone helpful. I hope so!

jennie62 in reply to agate

agate is right!

I used to be a Case Worker/Intake rep for The Office for the Aging/NYConnects and we helped people enroll in Medicaid and Medicare as well as hook people up with case workers. Not sure which county you're in, but call your local county government office for help! If you speak to someone there, they will hook you up with the person/people who can help you.

The 1st neuro I had kept telling me I had every other dx. Everything, but MS and he did nothing but prescribe medications that made me sleep. Took until I switched neuros in 2015 for me to be dx with MS. He made sure I had the spinal tap and MRI for him to see that since the 1st MRI I had done years earlier, the lesions increased from 2 to what he called UNDENIABLY MS.

Good Luck


Hi welcome! Have you tried obama care? Cost is based on your income. Some people get it free.

Welcome to this weird and wonderful site! I hope you can find some answers and make some friends here!

Sorry you're having such a hard time! When I was in Tucson and on AHCCCS, I found them to be less and less helpful as time went on - probably because at that time more and more people were finding themselves out of work and having to foreclose on their homes, sending them running to DES for help! But I was lucky in that I had some great neurologists who were very caring and supportive.

I was also happy to find the local chapter of the MS Society very caring and helpful. I don't know what part of AZ you're in, but have you contacted your local MS Society office? Maybe things have changed but, back then when I needed it, they helped me out a couple of times with some money for bills and information on places to get help. They even recommended the lawyer who accepted my disability case and, finally, won it.

How can neurologists refuse to look at your MRI's and tests? That's crazy! It wouldn't hurt to check with the MS Society and ask them for help finding a more open-minded neurologist who will look at all your results. In Tucson, one of the TV channels used to help people with problems they had with doctors/hospitals/companies etc. I think it was KGUN 9.

Also, if AHCCCS wasn't supposed to take away your insurance in the first place, does that mean they've reinstated it and given you 'back pay' for the time you were without it? Are you on disability or have you begun the application process for it? Are you on any of the MS drugs?

I hope you can find some help and a decent neurologist! Let us know how it's going, okay?

Anne :-)


Jesmcd2CommunityAmbassador in reply to Jbahnan

Hi Jbahnan new here? Hi if you are :) and welcome, l just don't remember seeing your name before. Ugh but half the time l dont know what day it is and the other days l dont care :d Anyway welcome to the roller coaster ride!

Jbahnan in reply to Jesmcd2

Thank you!


74ChargerKat, hello and welcome to this wonderful website and family from the MSAA. I'm Fancy1959 and have had MS for 15 to 20 years roughly. Kathy I too thought that with the Obama Care insurance overhaul that no one could be turned away or asked about an existing condition. That is the first surprise in your post. The second surprise about your post is that MS is the number of doctors including your neurologist who said your MS has gone away. MS does not go away yet. If it went away that would be an actual cure which we would all stand up and cheer for but we're not quite there. I don't know what to tell you other than try to take what MRI you have and find your state University that has a large MS Clinic and ask them for assistance in diagnosing and looking at your MRI's. You could also look for your Regional /local MSAA office and ask them for assistance in pointing you to someone who could help you.

The point you made, and what I hope everyone takes away from this, is to make sure you hang onto to any and all CDs taken of you that contain MRIS and other materials that was used to treat and diagnose your MS. If you are not given a copy of the CDs go to the hospital that your test were done at and get a copy directly from the x-ray department. They are free. Remember it is up to us all to be the person in charge of our own health and treatment. As such it is very important that we stay organized and keep all records we have about our MS and any treatments and test that we went through.

Kathy I would like to invite you to become our newest MS Warrior and join our fight against MS. Remember together we are stronger. Please keep in touch and let me know how this drama you should not have to be going through right now turns out. Fight on Ms Warrior fight on!


I'm so sorry for your experiences over such a long time. You must have a great deal of strength to have continued the fight with such perseverance.

We give you a hearty welcome and hope you will find lots of support here.

Go to Mayo Clinic. They will start your case from scratch but within 2 weeks you will have had all the test you need and a correct diagnosis. My husband was having difficulty getting a neurologist in our area since they were booked out for 6 months. He got in within a month after calling them and diagnosis in 2 visits.

Yikes! You have really been put through the wringer. I am so sorry. Others have given great advice here. I don't really have much to add but a warm welcome and the hope that you find a good, empathetic neuro to help you with your MS. I just don't understand the run-around you've gotten. Best wishes and prayers for a good, new beginning.

G'Day'I ;I've in AZ have AHCCS (Maricopa Health) 18 yrs and use Phoenix Neurological. Great worth a try all Drs there r pretty on the ms ga,,e, c them. O yeah I live in Chandler. Good luck

Hi my name is Sandra I am one year older than you, sorry to hear your life is going this way, but it will get better. Is there some way you can get Short/long term disability check into it.


I was just reading through all the posts here and was just wondering if you had contacted any local or state representatives. Just a thought, hope you can get some good help. Lynn

I want to welcome you and there is much experience, I also want to thank you for letting us know what happened.Here is a great group, prayers are felt, good words or wishes and what ever it is we do our best to try.I have been asked to now go thru also other ttests for epilepsy etc because I don't ACT like others with MS although I have mriis out the gazoo....Now all of a sudden?I again, think insurance, husband a little over 62 and we are a bit scared.Too rich for disability haha... and insurance 2,000 a month? is lowest quote.I know there are answers.Patience is a virtue...ii have little of.

Dear 74ChargerKat,

Welcome! You are right in that this is a very supportive community! I hope you feel that and enjoy being a part of our group. :)

I was diagnosed with RRMS the same year as you, so we share that in common. I am sorry you have had to be on this journey at all. None of us likes it. :(

I don't know how to respond to your insurance issues. That must be extremely frustrating! Where I live (MA), and I thought this was true throughout the country, you can not be denied insurance because of pre-existing conditions. It is bizarre to me that physicians wouldn't want to look at your MRIs. I don't follow what is happening in your case. It appears that you have had 18 replies already to this post, which I haven't been able to read yet, so I am hoping others can assist you with suggestions on that topic.

I mainly wanted to welcome you and I hope that you will post often. The more people here, the merrier! :)


Ak! 74ChargerKat I just realized you posted this a year ago. I am sorry. I'm not sure why some posts appear to be current in the application I am using.... It appears as though a new person has joined our group.... Anyway, apologies for my reply at this time.

I am wondering, however, how the insurance and medication issue worked out for you?

MRI of brain, spine and spinal tap are indications. Ms Specialist may help, I also get neurology today and another from Ms society for free. Good luck and welcome.

Hello. Welcome. Sorry to hear that you are going through this. Maybe contact the MS Association of America and they might have some kind of resource that can help you. 800-532-7667.

Yikes and welcome! I have no advice for you, but I am sorry for all the jerking around you’ve been though.

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