My Symptoms Are Back

Not only are they back, I still don't have any medicine. I just want to cry and scream at the top of my lungs but that won't help, it'll probably even make my symptoms worse. I feel like my life is being played with right now and I don't like it at all. Why are these processes so long? Why are these people so unfriendly? WHY...? I just want to start on something to find out what will work for me and what won't. If I keep stressing about this medicine that I don't have but I need, I think that I'm going to lose my mind.

41 Replies

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  • Stay strong and positive. I hope it work out for you soon.

  • Hi Shaena! My name is Carole Lesly. I was diagnosed with MS in January 2014 at age 52. At the time of my diagnosis I did not have health insurance. My neurologist was able to call the pharmaceutical company that manufactures Tecfidera (Biogen) and I was enrolled in a program that paid for my prescription. In March 2015 we got health insurance through my husbands employer. I immediately contacted the company and told them of the change in insurance status. But because our income level was below a certain level (I'm not sure what criteria has to be met to qualify for the program), I was still able to get my Tecfidera for $0. The company had a copy assistance program where they will pay for your copayment. If you haven't already done so, I recommend you call your neurologist & have them start this process. Surely they've dealt with issues like yours before!

    I am not confident in my ability to use this site (I'm DEFINITELY techno challenged!๐Ÿ˜œ). If you have any questions or need to talk email me at carolelynnlesly@gmail.com any time!

    I'm saying a prayer for you!๐Ÿ™๐Ÿป

    Try not to stress TOO much! ๐Ÿ˜‰ Stress is our enemy!

  • Hi carolelesly

    One of my issues is my neurologist's office. I was told from the beginning that after 2 denials, Biogen would be contacted for the $0 copay program. I was diagnosed in February of this year and now we're in mid May and I have no medicine. What's driving me crazy/to tears is the slowness of it all in addition to things not being done correctly on the side of the neurologist office. I was under the impression that as of May 9th, the prescription had been denied twice and now Biogen is being contacted. Today I contact Biogen directly only to find out that there has only been one denial as a result of the way the nurse practitioner handled something. Now I've contacted the neurologist office to give this person a piece of my mind only to have to leave a message and have yet to receive a call back. My next step will be to find the highest person within University Hospital and address a letter informing them of how much I am dissatisfied at this time, how I feel like my life doesn't matter at this hospital, etc. I am beyond pissed at this time and I need to be heard and understood.

  • Taylorsmom ~hugs~ I'm so sorry that your having to go through all of this! You would think they would be right on top of that! I don't know if MSAA can help in a situation like this but it sure wouldn't hurt giving them a call. They can also give you names of other Neurologists if you feel you need to change.

    800 532 7667 ext 154

    As far as your symptoms go, are you having a relapse? Maybe you should contact your Neuro about treating that? I hope you feel better soon!!

    Keep us updated!

    Jes ๐ŸŒ 

  • I don't know. Anytime symptoms go away and come back, does that constitute a relapse? I will contact the office again because I still have yet to receive a response. Also, it might be a good idea to look for another neurologist. Thank you for the contact information! Jesmcd2

  • Taylorsmom how are you feeling today? I hope better! If not you really should get ahold of your Neuro and see what he says.

    I pulled this out of "What is an MS Relaspe" pg. Check out the whole thing.โ˜บ

    relapses.mymsaa.org

    Acute physical symptoms and neurological signs must be present for at least 24 to 48 hours, without any signs of infection or fever, before the treating physician may consider this type of flare-up to be a true relapse. "

    Only Your DOCTOR Can decide if you are having a relapse or not though!!

    Jes ๐ŸŒ 

  • Hi Jesmcd2

    My symptoms had returned and lasted for 5 days. I consulted my neurologist office and was instructed to go to the ER in case I was having a relapse. In speaking with so many people when I was in the ER, it wasn't confirmed or denied that I was having a relapse. I was prescribed Gabepentin and instructed to see me neurologist next week. So, that's where I am right now.

  • I can imagine that sometimes it is very difficult to decide what is a relapse and what may not be a relapse. I don't think it's clear cut in many people that I have read on the number of posts and number of sites. Supposedly I have RRMS and other than the very first symptom I was sure about was a symptom of MS, the symptom I had when I got diagnosed, I can't say I've had any definite relapse since then. If my overactive bladder suddenly gets worse I don't know if it's a relapse. A lot of people have OAB and they don't have MS and most likely I would've had it anyway after a few pregnancies.

  • I agree. We need our neurologist to have our backs

  • Hi Sandydemop

    I agree but I can't say for certain today, that I feel like mine has my back. In the ER, a woman who sees my neurologist's patients from time to time spoke with me and tried to reassure me that he does have my back and that he's an advocate for his patients. We shall see because I plan on having a candid conversation with him next week during my appointment.

  • I hardly ever see my neurologist for anything in particular. I saw him yearly and last fall he said make it 18 months unless something comes up, and then I can call him. I don't know if he has my back or not.

  • Welcome to the age of modern medicine and bureaucracy! I find is totally unacceptable behavior.

  • Hi Taylorsmom,

    I pray you will get the help with your meds soon! ๐Ÿ™

  • Hi rgdickson10

    Thank you, same here!!!

  • Hi Taylorsmom,

    I had the same problem with my neurologist office. Slow!! And they still are if I have a change. I would suggest flattery. Saying such things as " I know you have many patients and are stretched thin but I am really concerned because I have not started meds " etc. Tell them that you are concerned that you will get worse without meds. Etc

  • Hi AngieRowe

    Thank you for that suggestion because the conversation that I planned on having was going to be the total opposite, lol. I will definitely try your way because it is true, you catch more bees with honey than with vinegar. I'll be back soon to tell how that conversation goes.

  • I agree with that approach, however I do a lot of reading and it's probably my personality that would say to him, I have read that the sooner one gets started with medication the less likely one is going to have more relapses and more myelin damage. I suppose that is with beautiful but basically what I have read says exactly that. I if you could quote a study somewhere that might also help but maybe not.

    I think all doctors, and I have read this in an article on Medpage I believe, have to get used to the fact that their patients do read and have a lot more knowledge than they used to have.

  • Taylorsmom, I'm sending a hug and saying a prayer. You're really going through a hard time, aren't you? We're all here for you. Jesmcd2 gave you the contact number for MSAA. It's possible they can also provide a list of other neurologists in your area should you decide to go that route. I don't really understand the delay in getting your medication, but you may be right, your doctor's office may have dropped the ball. As for your symptoms, it's possible you aren't having a relapse, but a recurrence of old symptoms because of the stress you are under. Of course, only your neuro can make that call. Perhaps you have another reason to call his office...hang in there. ๐Ÿ’•

  • Hi Tutu

    I did contact my neurologist and am scheduled to go in on Friday, June 2nd. I was prescribed a medication leaving the ER and was instructed to speak with my neurologist after a week to see how I'm doing on the Gabepentin. My symptoms aren't as strong as they were but are still present. Thank you for your kind words, I'm trying.

  • I hope the gabapentin works for you, Taylorsmom. For me, it is a miracle drug. I don't know what I'd do without it as it calms so many of my symptoms. I'll be praying for you and your doctor on June 2nd. ๐Ÿ’•

  • Thank you Tutu !!!!!

  • Taylorsmom Seems to me changing to a new neurologist and their office might be the way to go. Don't wait for a meltdown like I had...after 4 years with the old neuro who NEVER tested me and only told me I had everything, but MS. My new neuro gave me all the tests for MS and I was dx by the new neurologist within weeks! What a difference!

    Contact MSAA for more names of neuros (a MS Specialist is what I have now) in your area as well as who to get a hold of regarding your lack of meds.

    Jesmcd2 gave you the number to reach MSAA and I found them very helpful! Right after I spoke with someone they made an appointment and came right to me within a few days. They gave so much information I was thrilled with all their help. I knew they were there to help all of us! Best of all, MSAA gave me the peace of mind I needed!

    Hugs and prayers all goes well for you!

    Jennie

    PS Before I forget: Send a letter to the office manager and/or Neurologist about the lack of help from the nurse practitioner. They are the ones to contact.

  • Hi jennie62

    Thank you for your kind words and suggestions!

    I planned to do just that, sending a letter to the office manager regarding the nurse practitioner.

  • So sad all this happened to you. Hang in there!

  • Thank you BigMar7 , I will.

  • When I was first diagnosed, I was on copaxone. Shared Solutions was wonderful to work with. Unfortunately copaxone didn't work for me. Next came tecfidera and eventually tysabri. I relapsed both times waiting for those meds. It makes me wonder if it's the doc office or Biogen or both?? My heart goes out to you Taylorsmom. Good luck!

  • Hi Juleigh21

    That's my issue as well, I don't know who's completely at fault right now. Is it my health insurance company, the neurologist office or Biogen. I know longer think that it's Biogen though. Thank you.

  • Hi Taylorsmom! I'm so sorry you are having to deal with all this. I hope MSAA can help you. I'm sending you a cyber hug! You asked a question about what is a relapse. It can be confusing for sure. Here is the National MS Society's definition of an RRMS relapse (Hope this helps!):

    RRMS โ€“ the most common disease course โ€“ is characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks โ€“ also called relapses or exacerbations โ€“ are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission.

  • Thank you Raingrrl !!!!

  • Hi Taylorsmom, I was very disturbed to read your post about not being able to get the medicine you need. Of course I know nothing about your circumstances, or who you've talked to about this problem, but I felt I needed to suggest talking to Shared Solutions about getting your medication. They've helped me from the very beginning (3 years). They're very, very helpful. The financial assistance is through AssistRX, who I was referred to by Shared Solutions. Their ph# is 800-887-8100. GOOD LUCK!

  • Thank you laurenhc

  • Taylorsmom, I'm sure praying for a resolution soon. I am glad you are calling insurance and the doctor's office on your own. I was diagnosed last September, but couldn't get approved for treatment until January. But I kept making calls to make sure things had been done. I felt dizzy calling places repeatedly and being told I had to call someone else. It did help a great deal to be reminded that this disease process is relatively slow and that by waiting another month or two to start treatment probably would have little impact in the long run. When I would start feeling anxious, I would remind myself of that and do a lot of praying!

    Please keep us in the loop about your progress in getting treatment started.

  • Hi greaterexp

    I will definitely keep you all in the loop!

    I'm trying to relax right now and not get so anxious and upset as I've been getting lately as I understand that does no good for me. I will continue to make calls and ask the questions regarding my medicine though. I have been told that this process will take some time so it's not as though I was promised a quicker time. Again, I'm just trying to relax.

  • Taylorsmom, I don't know if it would help you, but I was having to make calls through some of the worst mental fog. My frustration and anxiety would grow with each phone call as I couldn't remember which group of people I had talked with, and being constantly transferred to someone else. I started keeping a phone log of each call with the time and date, as well as the specific name of the person(s) I talked with. I wrote down what was said and what instructions I was given, too. That helped a lot with keeping things straight and I could review what had already been done before making another call. I made sure I kept a record of all the phone numbers I called. "Be angry, but don't sin." I didn't want to burn any bridges by getting angry. I've been on the other side of phone calls when an angry patient called. Yes, the squeaky wheel gets the grease, but I found people went out of their way to help more if I was kind. That's really hard to do in the middle of the fog with fear and frustration building!

    I hope your frustration eases as you get more answers. We sure don't need more stress!

    Hang in there!

  • Dear Taylorsmom, I understand your frustration. Having symptoms myself with medicationโ—๏ธRemember why you need to keep going.

    Wish you the best.

  • Thank you Sandydemop

  • Contact Patient Access Program. They can probably help.

  • Taylorsmom and any others who may need this, here is a link to the MSAA's prescription assistance program. I don't know if your delay is due to your doctor's office or the drug company or your insurance, Taylorsmom, but I hope this helps:

    mymsaa.org/ms-information/p...

    ๐Ÿ’•

  • Thank you Tutu for this information. I'm beginning to think it's a tie between my health insurance company and my neurologist office.

  • Taylorsmom hi hun how are you? Are you feeling any better? Sorry it took me so long to get back to you. I needed a CPL days off, so l didn't have a relapse ๐Ÿ˜Š.

    I'm concerned that the ER didn't take better care of you, since your Neurologists told you to go. Although they are just there to patch you up, they should have, gotten a hold of your Neuro about solumedrol treatment for you. That's my opinion.

    I pray that your conversation with your Neuro goes well with your Neuro. Make sure you take your journal!

    List your meds! Your symptoms. With dates, times, how long they lasted exc.. also all your questions! List them from most important to you, then down.โ˜บ

    Drs only have about 15 mins for each appt on average.๐Ÿ˜•

    ~hugs~

    Jes ๐ŸŒ 

  • Hi Jesmcd2 ! I'm doing much better since the Gabapentin. The ER told me that the solumedrol wasn't the answer for what I was going through. I was told that my symptoms were neurological when I was admitted for the 3 days of infusion but what I was having going into the ER was peripheral.

    I pray that the conversation with my neurologist go well as well. Hopefully, I can be brought up to date on my Tecfidera debacle lol.

    I just found that out, that appointments are only 15 minutes.

    Thanks for checking on me, I will keep you all informed of what's next!

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