Migraine

Okay,

Today I'm inches away from a nervous breakdown. If you've read my other posts, you know I have two or more migraines almost every day, and I applied for short term disability from my employer back in May. My last day of work was May 8th. Well, here we are almost a month later, and I'm still waiting on a decision from these people, if that's what I should call them.

Today I actually had to go to the Public Assistance office because I have nothing left. My husband has been disabled for the past five years. I usually take care of him, not him taking care of me, so these last six months have been very, very, hard for me. We actually make $50 too much a month on his disability to get emergency food stamps. And I have to have my payroll person at work verify my last day of work. Let's just say she's not tight-lipped.

I have no vacation time, I filed for and used up all of my FMLA, and my job is in jeopardy if I don't qualify for this disability. I have a technical job, I look through a microscope and make diagnoses on cells. I have to be clear headed, that means no Topamax, no triptans. I have to be able to put the patient first.

Here's what really put me over the edge: I called the disability company today, to see what the holdup was. They said that there was no proof of disability on the tests (even though I have white matter lesions on MRI and they have those results) and they needed more information from my doctor. I really can't believe this. I can't even clean my bathtub or cook a real meal for my family beacuse my stupid head hurts and they are sitting in their silly little cubicles making decisions that will affect my whole family because it doesn't look like I have a disability on paper!

I really can't handle another minute of this today. I'm not suicidal or anything, just overloaded. I'm crying as I write this. I never wanted my kids to have to carry my burdens, and now my thirteen year old has to take care of me, and see all of this other junk.

I'm so glad to have a place to get this out.

Hi Melissa

I was just thinking about you sweetie. Teri is out of town and she said feel free to email her if you'd like. You can also email me too.

First take a deep breathe, and try to relax, we'll help as best we can.

I was re-reading your older posts and I think it is time to enlist the help of your understanding neurologist and let him know the dire straights you are in. He has to help fill out the forms, regarding the changes that are CLEAR in the MRI regarding your lesions. At this point whether it is MS or not, they are affecting your head, health, and quality of life (that is a big phrase) and he needs to say so. Call him this morning, be pushy, but polite, say you really, really need to speak only with him. Don't give the "office" ladies any reason tell you otherwise, sometimes they are good at that. Tell them it's regarding your treatment. That's what I do.

Let's start there.

I can't offer any advice, but I wanted to give you some hugs! Hang in there.

I honestly can't imagine what your going through right now. I just hope things get better for you soon!!!

Remember we are all here for you whenever you need some support.

Nancy has already given you some excellent advice. I don't have anything else to add. I just want to offer you some support.

Liz

Melissa, I am so sorry for all you are going through! Know we are here for you any time you need to vent

Keep us posted on what is going on

Valerie

Hi Melissa,

First, I am so sorry that you and your family is going through a rough time right now.

I just read in the tea room that you have an appt tomorrow with you Nuero. Is that right? If so, you may want to do what Nancy says but tell him face to face what dire straights you are in. See if he will fill out the right forms or letter right then and there.

Also, there are programs that will help with discounted foods where you do not have to meet a required income. Like the Angels network and some churches. I know you might not want to do this forever, but if it helps until you can straighten out your disability it might be something to think about.

Hang in there, we are here for you!!

Dar

Thanks for all of your support and hugs. They really do help.

Here's an update: My PCP called me back, and said he had sent back all of the forms my disability company had sent to him. I decided to call the insurance back. My case manager is on vacation (of course) So I had to talk to someone different from who I spoke to earlier, but he explained things far more clearly than the woman this morning. The disability nurse has been talking to my neurologist's office this week, not my PCP. That would have been nice to know. I do see my neuro tommorrow morning. I'm taking a copy of the disability form for him to fill out. Make him outline my limitations, all that stuff. I'm going to sit down tonight or early tomorrow morning because I usually feel pretty good in the morning, and go over everything. My husband is going with me, and he is far more forward than I am about the severity of things. Like I said earlier, I'm used to being the caregiver, not the one needing the care.

I was a little snotty on the phone with the guy from the disability company. I had to do it, though, for all of us. Since they said all of my tests were normal, I asked him, "Is there a particular test I should have my neurologist run, so that you can get the objective results you need to make a decision on my case?" I prefaced this with the fact that I wasn't trying to be cynical even though it was going to sound that way, especially since they already have the MRI results that show white matter lesions that relate to brain damage from migraines. Anyway, he was very nice and asked around and said they can't give medical advice and it was up to my doctor, blah, blah, blah.

Dar, my mother-in-law told me about the Angel Food network and I'm going to get some food through them, but that won't be until the end of the month. She also told me to call our church. That's something I still have to do. My husband will get paid on the 18th. We just have to hang in until then.

Thanks so much for all of your support. I feel mbetter just having a network of good cyber friends to turn to.

Melissa, I just wanted to add my love. I have some experience with the desepration you are experiencing. I know how hard it can be to ask for help, that alone is a very humilating experience.

Mary in NM

Well, in my estimation, today went badly. We went to the appointment with the neuro, and he listened to me, and once I started talking about the disability company, he said, "Well, they don't give didability for migraines". I said I have them every day. Work is a trigger. All the things I've already said here in this forum. Then he said he didn't think it was "just migraines" anymore. (Well, hallelujah, pass the grape juice, now we're getting somewhere, so what's next?) So I asked him what he thought it was. "Chronic daily headaches. A combination of migraine and tension headaches." Even though all of my headaches are one-sided and have neuro symptoms, now they're tension headaches. Okay.

Then we talked about my numbness and right sided pain. again I thought we were getting somewhere. He seemed concerned that my symptoms have become progressive and he did another neuro exam. Even I could tell that the results were different from the one he did just two months ago. He used a tuning fork on my face to see if I could feel vibrations and there was an obvious difference between my right and left sides. So with all of this stuff you'd think I would be getting at least some hints of answers, right? Well, so did I, but we were both wrong, friends. I had to keep asking him for info as we went along. So what does this mean, so what does that mean, so what's next? So he talked about doing a spinal tap and doing my brain MRI now instead of in September. Both two good things. Then he said he would be right back.

Things looked okay at that point. I thought he was helping me. My husband thought he was taking a serious look at my symptoms and was going to explain things to us. He came back 20 minutes later with a prescription for medrol (My PCP gave me prednisone prednisone worked last time, not medrol. Is a medrol dose pack strong enough?)

He also gave me the name and number for another doctor. He's a headache specialist here in Pittsburgh. Dr. Kaniecki. I have to call and make an appoinment. I guess my neuro can't help me anymore, even though he didn't say that. He tried Topamax and Relpax, and he's done trying. Nice.

This was when he gave me a prescription for another med; its called Pamelor; He said its to help me sleep at night and to help with the numbness. He still hasn't told me exactly what's wrong with me. That's what I'd like to know. I'd at least like a differential diagnosis here. It could be A or B, and we have to rule these things out.

So this was the end of the appointment. He told me to get my brain MRI and MRA (no spinal tap). I had the two prescriptions and he would see me in three weeks. Keep taking the topamax. When I asked him again about the disability, he said to have the disability company have their medical sppecialist call him. I said their nurse had already called (several times)and talked to Peggy. I also tried to hand him papers to fill out, the same ones my PCP sat and filled out with me. He told me to give them to the girls up front.

When I talked to Peggy, and mentioned the name of my disability company, she looked at me like I had three heads. I said the nurse had called me this week and had called the office and talked to her this week. I just talked to the disability company yesterday and they have record of her talking to them. They wouldn't have her name otherwise. I didn't even know they had contacted my neurologist's office until yesterday. My PCP must have given them the number. (Good for him.) Anyway, I had to wait for good old Peggy to come back to the front office to give her the disability paperwork and my notes. I had written up my limitations regarding work and filled out one of those HIT-6 questionaires). She again looked at me like I had multiple heads. "Does the doctor know about these?" "The doctor". That stuff makes me crazy. We have pathologists where I work, and we always call them by name. Dr. K, Dr. X, whatever. "The Doctor" just puts too much awe into it for me. it really sticks in my craw. "Yes, he knows about them, he told me to give them to you."

So that was the end of my visit. I had absolutely dissolved into a puddle of tears by the time we made it back to the car. This has been such a terrible week. And this doctor really doesn't seem to get it. If he does get it, he isn't communicating it. I feel like I'm going to have no choice but to go back to work no matter what condition I'm in.

I ate lunch and took a nap when I got home and felt better. I scheduled my imaging studies for this coming Wednesday. I'm going to schedule with that new headache specialist as well as with my friend's neurologist for a second opinion on Monday. Things have got to get better, right?

Awww Melissa,

I am so sorry . Just when you thought this doctor was working with you. Geez, I don't blame you for being frustated after dealing with that office .

I am glad that you are getting a second opinion. But, don't give up on getting this silly doctor to fill out the forms. Have DH help if he can. Or maybe the PCP can call the silly front office girl!

Again, I am so sorry but, remember we are here for you and I am rooting for you and this disability to work

Dar

Melissa i'm just catching up. I'm so sorry it has been so hard! Plenty of to you and your DH and do not let up on that dr's office til you get what you need! Be the squeaky wheel! And Nancy suggested you could email her or Teri I think they have tons of great experience to share in this kind of advocacy work so don't hesitate to take her up on it!

I'll be keeping you in my prayers.

- Megs

I am sending you a hope that some angel crosses your path. You need it so badly. Praying for a good outcome on Monday.


Mary in NM

My goodness, Melissa. I'm so frustrated and sad for you. I can't understand for the life of me why some doctors have to be so difficult and struggle so much to do their jobs.

I have been sitting here feeling sorry for myself, and now I kind of feel like a jerk for doing that. Yeah, my situation is hard, but I have a really good doctor on my case and all my treatment providers do whatever they can to help me. I'm so lucky to have that.

Please take care and don't be afraid to be as aggressive and persistent as you can be.

Diana

I hope today is a better day! I'm so sorry you're going through this. Your neurologist needs a kick in the rear. So do the disability folks. I know it feels like the job of the folks you've been dealing with is to make it as hard as possible for you to get paid. They're instructed to be nit-pickers. So they're almost impossible to deal with!

Keep after your neurologist. Get the second opinion, and see the specialist. I'm seeing one, and after six months, I'm seeing some real improvement. I started having improvement within about 3 weeks. You deserve the best treatment you can find.

Keep taking your DH to appointments. Two sets of ears are better than one.

Hang in there! I'm praying for you.

Gret
Gretchen in Mississippi

Melissa,

My wife and I are sorry for all that you have been going through lately. We don't post much but Solveig wanted me to post that we are keeping you and your family in our prayers.

We know first hand how very hard it can be to get on disability. My Solveig has lupus which has caused her kidneys to begin to fail (she is on dialysis thank goodness), she also has adrenal issues, thyroid issues, has had two brain surgeries for aneurysms (only one caused any damage but we can see definate side effects of the damage), and has migraine disease (she gets bad HM attacks).

One would think that based on all that it would have been cake walk to get her on disability. She is on it now but it took us a year to make it happen. Well, it didn't take us a year it took the paper pushers at the disability office a year.

It was very frustrating and I could tell it affectd my Solveig. She was a counselor and was used to helping others so when her health took a turn for the worst she felt so deflated and lost not being able to work. Throw on top of that the year it took to get the disability and she felt like a burden. She is not nor has she ever been a burden to myself or our children but I can see how she could feel that way since SHE was the one used to helping everyone both at work and at home.

Anyways, I would definately look into a second opinion and keep pushing to get some answers to your health questions. It can be scary to have symptoms or results on a MRI and not be told whats going on.

A tip Solveig likes to pass on is to bring a tape recorder (audio) to your appointment and ask if you can tape your conversation. This really helped us in the past especially when she got the lupus diagnosis and also during the meetings with the neurosurgeon before her surgeries. At first I didn't think it was necessary since I was at the appointments with her but you will be amazed how much you can miss during the actual appointment. We must have listened to each of the tapes 5 times and each time we would pick up on something new so the tapes sure came in handy.

Good luck and don't forget that we're all thinking of you.

Peace,

Dave