Relapse denied by doctor

[Vlbrown57]

I am new to this forum. My perception of a genuine relapse is always denied by my neurologist. Is this common and could it be linked to attempt by dr to ensure meds are effective to appease pharmaceutical companies?

[Royjr]

Good afternoon Vlbrown 57. I understand exactly what your thinking. Half the battle fighting this disease is to have a good neurologist you can confide in. They are hard to find. Sometimes you just want to talk about your issues and for them to listen and understand. I found mine doctor when I was diagnosed. I don't know where you live but this heat will cause our symptoms to worsen. Talk to someone about PSEUDOEXACERBATIONS. It makes you feel like you're having a relapse. There is a difference between the symptoms. Sometimes doctors have a problem communicating this issue. Common triggers that may cause a pseudoexacerbation include infection, especially urinary tract infection, stress, pain or fatigue, exposure to heat or cold, premenstrual syndrome, or certain medications.

[Vlbrown57 in reply to Royjr]

I am taking an antibiotic for bladder infection. So that is most likely what's been going on. Some days I wonder if this life is worth living. So distressing.

[Royjr in reply to Vlbrown57]

Vlbrow 57, don't let this disease beat you. I was diagnosed in 2001 and some days are better than others. I try to work out everyday (weights because of mobility problems) and it took me awhile after being diagnosed that my illness is nothing. I wake up every day while some people will not wake up at all. There are plenty of diseases that'll take you out. MS is not one of them. Don't let it win. It's just another day

[euniceconleyelc in reply to Royjr]

Thanks for this info.

[euniceconleyelc]

I understand how you feel. I used to feel like that. its been 10 years since I was diagnosed. I self medicated which ignited a past terrible substance abuse problem to compound my symptoms! I know the feeling of "knowing something isn't right and no confirmation". If you have not gotten hooked up with emotional therapy (because anxiety/depression usually accompanies MS) look into it. I didn't think that it was something that I would ever do, but It's been an awesome help! I am new to this forum as well. Yours is the first post I saw. I hope you can get something out of my experience. I am five years sober/clean now and I am so traumatized from that battle! I am hanging onto my recovery and my transformation to a better and more positive life because my life depends on it!

[Vlbrown57 in reply to euniceconleyelc]

I have a strong belief system that has sustained me through difficult times. But MS has challenged my faith and made me struggle with reason why to go on.

[euniceconleyelc in reply to Vlbrown57]

What I choose to keep in my mind when I get discouraged about this disease, is that God has made me a warrior. MS is my adversary's way of fighting me. And the way that God has me set to fight is with all that have! I'm fighting with all of me, my immune system even! God chose that only certain people would be equipped to handle this type of warring. Congratulations you are among the chosen! Your faith will sustain you.

[Vlbrown57 in reply to euniceconleyelc]

My Christian faith is challenged but as you say this disease cannot come between me and God. My goal is to keep working on becoming a prayer warrior.

[5alive5 in reply to Vlbrown57]

Hi It's MS, it is treatable you will go on

maybe some very good days or bad.

at least there are options of meds or maybe

alternatative therapies there is help.

I say this because when i finally ened up

in the ER my good friend took me to the hospital & I

got diagnosed with MS little did I know

about her health condition :0(

She looked good and appeared strong

but she passed a year later for stage 4

cancer. I got the messages from

other friends that they told her

there was nothing more could be done

to help. So look up I have to believe

God is giving us a chance to enjoy

ourselves despite our MS Be strong

and keep the fatih one day you may

be cured

[Nicolesessler]

You're probably having pseudoexacerbations, which feel exactly like normal ones even though they're not. I get them all the time and I'll have all the same type of symptoms I get with actual exacerbation, even to the point of losing function in my limbs or hands. But what is really going on is old lesions are being aggravated or annoyed and causing the symptoms. Ask your neuro if he/she thinks that could be what's going on.

[Vlbrown57 in reply to Nicolesessler]

Thank you for that information. So a true relapse must be verified by finding new lesions and that requires an mri which I can't afford. Will just try to get thru this miserable episode without Dr involvement.

[Royjr in reply to Vlbrown57]

A relapse normally last a few days as for pseudoexacerbations they seem to disapate after removing what ever caused them (getting rest, cooling, heating, stress, or infection). If your symptoms last no matter what you do, you properly having a relapse. I'm not a doctor but my neuro explained this to me.

[Vlbrown57 in reply to Royjr]

I have been struggling with this tough time for about a month. Taking it hour by hour.

[euniceconleyelc in reply to Vlbrown57]

YOU GOT THIS. KNOW THAT.

[Vlbrown57 in reply to Nicolesessler]

I will definitely make that my focus when I see the neurologist in September. Thank you for the information.

[Sukie427]

As everyone else is saying, I think that we are the best judges of whether we are having a relapse or a pseudo-relapse which doesn't require extra medical attention. A relapse is generally defined as new symptoms that last over 24 hrs or an exacerbation of old symptoms that last over 24 hrs. When I have one, I know it. I just don'e feel right. And to have an understanding neurologist is the first step. You could be having a pseudo-relapse or a flare where you have an aggravation of your symptoms, but these are usually controllable. I am lucky to live in a state that has legalized medical marijuana and I have found nothing that works better to soothe and eventually stop the symptoms; that's how I can tell if it's real or not. Nothing works to stop a relapse except relapse meds. If you don't have a neurologist that you can really trust to understand how you are feeling, you are in the wrong hands no matter what the reason and I would start looking elsewhere. Try to find one who specializes in MS; I don't think general neurologists know enough about it. Good luck!

[grammyshay]

I am confused. Are you saying that you are believing that you are having a relapse and your doctor is saying no you are not? I have been repeatedly told this over the 25 years that I have had MS. To me, a relapse is an episode that has never happened before and lasts for more than 24 hours (Someone please correct me if am wrong). My new neurologist went over 25 years of MRIs with me and I have only had maybe 5-6 and they were early on in my MS career. I did have one in 2017 and was not even aware of that one... Go figure.

She did explain to me that 'what' I have been experiencing are like leftovers from a former relapse. I have many leftovers. I have now moved into Secondary Progressive Multiple Sclerosis. Sad.. but it happens sometimes. I hope that this helps you.