I lied to my nerologist now I need help!

[JustKeepSwimming24]

Please help. I am a mom of 3 toddlers who was diagnosed with a very agressive PPMS. I did the IV infusions for 6 days which had terrible side effects (ie; skin was on fire with the slightest touch, extreme fatigue, nasea and vomiting). I did 2 months of Rebif then started having injection site reactions (ie; fist size bruises, golf ball sized lumps under skin) so the doctor took me off them. At this point I was already depressed and discouraged. My doctor decided to wait a month before starting the next injections. At that appointment I told him I wasn't having ANY symptoms and didn't want any treatment. That was a lie. My symptoms have only gotten worse but I didn't want anymore injections.I didn't want anymore failed treatments and disappointments. I know I need treatment but I don't wanna tell him I lied, I don't wanna ruin his trust.I go back in September for another MRI and he is going to notice new active lesions and know I lied to him. I need to fix it now but how? Any suggestions?

[Quixotic1]

Another welcome from me.  I am a MD who thinks all of the suggestions you have will work.  It all depends on how well you feel inside about the lying.  If it is eating at you you can certainly say that you were so frightened and worried about all the side effects that you fibbed and said you didn't have new symptoms.  Your neuro should be understanding of the frailties of someone in the throes of a frightening disease and frightening side effects.  If your doc gets all uppity and bothered by this, then you need a more compassionate one.

I totally agree that you and the neuro need to get onto the same page with what kind of MS you have and what the treatment plan is.  As mentioned above there are no meds approved for PPMS.

Would you like to give us a quick timeline of your symptoms and their progression?  Have you ever had a remission where your symptoms either improved or stabilized such that they remained stable for at least a month?

Quix

[HVAC]

I have PPMS and Cancer sometimes I do not tell my Oncologists I am having symptoms because I do not want steroids for Cancer. The steroids can be worse than the symptoms. They know I am not telling the truth. I sometimes get tired of treatment. They can see I am not at my best. They let it go. Your Neurologist can see your symptoms if they are bad.

Alex

[summerluvr]

just say you started feeling unwell after your last appointment but failed to contact him as "life got very busy taking care of 3 toddlers".  I don't see why it willl ruin your relationship.  Don't beat yourself up.  If he asks you for more details just give vague answers and dont worry about it, he will move on.  I don't have MS but I have another serious incureable disease so I will be off and on treatment my whole life so I understand what it is like to get tired of drugs, and reactions and side effects. I am on a med break for the last few years but will be starting chemo sometime soon (I have a chronic cancer) take care.

[kwarendorf]

Hi JKS - Welcome to our group

I verify one thing that ess mentioned, there is no correlation between llesion count and disability. I have lesions in my brain and in both my c & t-spine, all of different ages. If you were to see me on the street you'd never guess I have SPMS :-)

I also agree about the treatment discussion. Ask him what his plans and expectations are.

Kyle

[essdipity]

Hi there. I do understand your problem and hope some of us can help. But I'm surprised that if your neuro is sure you have PPMS, he has put you on any treatment form. The standard treatment possibilities are all geared to RRMS. Some doctors will try the various meds anyway, providing the patient's insurer will cooperate and cover the costs. But I think you need to talk this over with your doctor to make sure you two are on the same page.

IV steroids often don't work well on PPMSers because the steroids reduce inflammation, and with PPMS there usually isn't a lot of inflammation. You don't say whether this intervention actually helped. But if it didn't, or not much, then you're certainly justified in refusing steroids in the future, especially given the bad side effects you had.

I do think you're overdue for a frank talk with your doctor, but you don't have to say you lied. He already knew you were having a hard time with Rebif, and no one is required to be on an MS treatment after all. Another consideration is that symptoms and MRI lesions mostly cannot be correlated. A person might have one lesion and very bad symptoms, and another person could be filled with lesions, relatively speaking, and have few or mild symptoms. So just because you may have a worse MRI outcome, you haven't 'automatically' had increasing symptoms. And it's also possible that your MRIs will not show a lot of change even though you're feeling a lot worse.

You do need to understand your doctor's treatment approach, that's really important. And if you do have PPMS, you might be better off just taking meds for symptoms, and not doing a treatment. But be upfront with him about your situation at home with little ones, and ask as many questions as you need to to understand where he's coming from as well. You two are partners in dealing with your MS, so discuss it on that level.

ess