Lulu, if only my reading comprehension was a bit better. I read your first post again. It just says to let the neuro know....It does not say to call them immediately. I guess I put words into posts that are not there...lol....
We are on the same page. Thank you for answering.
Progression in MS can happen with or with out symptoms and sometimes without new lesions on an MRI. Much of the damage in MS is gray matter damage which does not show up on a MRI. I have three lesions. My MRIs over time look identical.The Neurologists are sure I have had MS for over 40 years.
I am not sure what you mean about pharmacies. Many states have strict laws about certain classes of pharmaceuticals. You have to show I.D. and Doctors can't call in certain scripts or refill them. Someone else can't pick them up. This is especially a pain after someone has just had surgery. Also you always have to sign a waiver saying you understand the risks of the drug.
Likewise Insurance companies have strict policies about filling certain scripts. Mine allows me to only fill my migraine pills a month and a day after I come into fill my nine pill supply. Say I got it filled on the 25th of April, I go in on the 25th of May and I have to come back on the 26th. They also have a rule a pharmacy can only give you fifteen sleeping pills lke Ambien, or Lunesta , or generic or any other drug which is sedating a month. The Doctors are required by them to do pee tests for certain drugs.
There are also a 85% of a drug interaction or severe side effect if you take 7 or more medications including over the counter drugs. No one really knows how a combination of drugs will work on an individual. I have had Doctors prescribe some combination and the pharmacist has to call the Doctor each time because it was a legal overdose. The pharmacists have to be concerned of lawsuits and for your safety. Being a pharmacist is a scary job you have people's lives in your hand.
It would be far worse if they filled any script and did not think of all the combinations. Many Doctors are busy and just do not take the time to review what drugs you are on every visit. Then you get multiple Doctors.
I know if I take some of my drugs at the same time I am in big trouble. No Doctor told me I have found out the hard way. All the drugs were legally prescribed. Even mixing them with common over the counter medications can be deadly.
In my case I have MS, asthma, hypothyroid, migraine, and allergies. I have 4 Doctors. I am in a drug study and I get samples. It is a lot to keep up with. I am on 22 drugs and supplements. My Doctors and Pharmacists are good but have been honest and said none of them knows how the drugs are interacting and some of the possibilities are scary.
May be your pharmacists are rude. May be they are concerned and looking out for you.
Alex
First of all I am not always right about everything - I have the track record here of taking my due lumps when I am wrong! LOL
Shared Solutions has a patient assistance program that covers my $50 monthly copay, so I opted to not have the 90 day supply sent to me. It makes no sense for me to store that much in my refrigerator when the mail order place can handle it for me. Same with my Ampyra. But I do use the 90 day option for several other drugs. All these assistance programs require us to do the math and figure where the best deal might be. I have a lipitor rx that I get filled locally becase they have gone to a $4 copay at my pharmacy. Through the mail it would cost about $20 for the 90 day supply - I save $32 over the year by doing this one locally. I hate playing all these games to get rx's filled, but they are leaving us no choice.
When you do and don't call your neuro's office is entirely up to you ..... if the symptom is bothersome enough and you think you want treatment then by all means call. If it is something that you can live with and muddle through, then just make a note of it for later. My understanding is steroids or not, whatever is bothering you will resolve to it's own point - the steroids just speed up getting to that point, whatever that may be.
There aren't many options for treating flairs except for the steroids or time. Now symptoms are a different story, and it might take a lot of experimenting with drugs to get the right combination to help.
Now if you have made sense of this answer, I am impressed. This is one confusing disease to explain, especially when it comes to treatments.
I love you all, too!
Lulu
I also agree with Lu about the pharmacist. Try to share your diagnosis with him/her if you are comfortable. They don't necessarily see all the meds you are on particularly the MS drugs since theyare usually sent in the mail. I have shared that I have MS with the regular pharmacy that I go to and it has opened many doors. They are invaluable for answering questions about meds and what meds you should not take together, atleast they have been helpful for me. It is also nice when they see you come in and know about your condition. So try that first before you change pharmacies.
As far as the flares, you are going to need to learn what is "normal" for you. It took me awhile - a year or so - to learn my normal and know when to call the neuro. Be aware that steroids only help you feel better a little faster and don't cure anything. If you wait too long to call then the steroids won't be of much help and can even cause more problems than they help. It's tricky but you will learn how to handle this over time.
Be well,
Julie
Hi! I am newly diagnosed too. Im right there with you when it comes to questions. LOL
It is my understanding from my doctor that if a symptom is bothersome, to call. If not, just be sure to write it in a journal. I put everything little symptom in my journal so that when its appointment time, I won't forget to mention it. I am glad you have a nurse you are comfortable with. Sometimes you can get exactly what you need from them over the phone without a doctor appointment. As for not knowing if a symptom is MS related, I have the same question. I guess if we are not sure, we could always see our general physician. With MS, we need to have a team of doctors that are there to help us!
As for the pharmacy, Lulu hit on the head. She's always right about everything by the way! Love you Lulu! I don't know if it's possible with you, but does your insurance have mail order for meds? I have some meds sent in 90 day supplies that come straight to my home. It's very convenient for those meds that you regularly take. I even get my Copaxone that way. This is just another option.
Hope this was helpful. You're not alone out there with all your questions.
Best of Luck!
Jeny
Thanks for the info. I too am confused about when to call my neuro. I see him every 6 mos and he does his different tests and asks me questions. He has one nurse that I hope to never get when I call and then there is one I ask for by name. She is great about answering questions and calling me back. I made sure I let my dr know how good she's been.
Thanks again
I hope it is okay to ask this question here or I will be happy to open a new topic but I am confused on flairs. I don't understand contacting a neuro each time one happens. Now I do see my neuro every three months. I always tell her then. I am on steroids monthly which I am stopping due to the horrid heartburn. My understanding is that steroids just shorten the flair and do nothing else. I haven't told my neuro I am stopping the treatment but I will see her the end of June.
My question is....are you and others contacting your neuro's with flairs because you may need steroid treatments or is there another reason? To be honest, if I were to call my neuro each time I had a new symptom for 24 hours, she would be taking calls three or four times a month. I am not trying to be flip. I just don't understand.
hi TAVL,
the thing about lesions and our brain can be confusing. I have a large load of lesions, but few serious symptoms from them. It is all about location. There is a lot of prime real estate in our brains that is never used - it is sitting there in case our brain needs to rewire itself but is not in an active use state.
We know that MS never stops progressing - we just don't always see evidence of that progression. What you're saying gives proof to that. The key to disease management is to slow it down and keep hoping that any new disease doesn't hhit key areas of the brain.
As for being in a flair/exacerbation/relapse (they are all the same!) - if a new symptom or a previously experienced symptom that had quieted down, is around for more than 24 hours, be sure to let your neurologist know. This doesn't have to be a 24 hr non-stop marathon, the symptom can sort of come and go during that time .
As for the pharmacist, you have a couple choices --- talk to them and tell them your condition and explain what you are feeling and see what they have to say and if their attitude changes. OR go somewhere else. I understand the convenience factor, but there are enough people who will look at us and wonder, we don't need these professionals doing the same. Their pharmacy makes big money off of filling these drug orders - if enough customers move their rx's to someplace else perhaps they will begin to understand the problem is with them.
be well, Lulu
For me a flair is when the MS interferes with my life for a period of time. Examples are losing the use of my dominate hand. I couldn't scrub things in my kitchen. I couldn't write without a great deal of effort. I had no strength in that hand. Another example was double vision and blurring along with extreme fatigue. The fatigue was so bad I could not sit up. To me a flair is more than just the every day MS stuff...It goes to an extreme. These are the things I bring up to my neuro.
I have no clue about your pharmacist. My husband picks up my drugs and is always treated with respect. I think your husband is right. I would take my money elsewhere.
Another thing I want to know is how you're treated by your pharmacist. I'm sure it's no surprise to anyone here that we take meds to help us feel better and to hopefully get around better. The two pharmacists where I go make me feel like a drug seeker. I was thinking I was feeling paranoid (is that an ms symptom) until I heard another customer complaining very loudly regarding the pharmacist.
My husband said I should go somewhere else but it's convenient.
I guess I was wondering if anyone else ran into this
Thank you