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Putting a face to Multiple Sclerosis
Hello everyone,
Since my recent MRI results i've been undergoing a complete metamorphosis of emotion.I find that I have oscillated between despair, and complete disbelief, to validation of my symptoms.
I feel as if i've received far more than my fair share of suffering over the years with absolutely no medical help. The possible MS diagnosis made me almost laugh.How worse could things possibly get?
I decided to visit a behavioral medicine therapist to help me cope. Instead of helping me, she seemed overwhelmed and said I needed medicine for depression and anxiety. I wasn't doing anything particularly odd, but I was looking for someone to talk to. It is my opinion that the girl was entirely out of her comfort zone.
I feel as if i'm a leper or an outcast in society, especially amongst the medical community to which I have entrusted my wellbeing. I'm 29, and i've already been yelled at by neurologists, given a, "oh well, you're screwed" look by others, and practically dumped by my therapist.My primary care physician is a professor of medicine, and even he seems unsure of what to say.
So here I am.I decided I needed to meet people who have multiple sclerosis - even if that is just online - to meet actual sufferers.
Since my recent MRI results i've been undergoing a complete metamorphosis of emotion.I find that I have oscillated between despair, and complete disbelief, to validation of my symptoms.
I feel as if i've received far more than my fair share of suffering over the years with absolutely no medical help. The possible MS diagnosis made me almost laugh.How worse could things possibly get?
I decided to visit a behavioral medicine therapist to help me cope. Instead of helping me, she seemed overwhelmed and said I needed medicine for depression and anxiety. I wasn't doing anything particularly odd, but I was looking for someone to talk to. It is my opinion that the girl was entirely out of her comfort zone.
I feel as if i'm a leper or an outcast in society, especially amongst the medical community to which I have entrusted my wellbeing. I'm 29, and i've already been yelled at by neurologists, given a, "oh well, you're screwed" look by others, and practically dumped by my therapist.My primary care physician is a professor of medicine, and even he seems unsure of what to say.
So here I am.I decided I needed to meet people who have multiple sclerosis - even if that is just online - to meet actual sufferers.
Best Answer
Hi rykerjem - Welcome to our group.
I'm sorry that ou have had such a bad reaction to your meds. Levaquin and Cipro are aimed at infections. MS is not an infection so those drugs don't get a lot of play around here.
I wanted to point out that this thread is over a year old. I haven't seen hibbles around in a while. I just don't want you to think she was ignoring you :-)
As to MS, have you seen a neurologist?
Kyle
I'm sorry that ou have had such a bad reaction to your meds. Levaquin and Cipro are aimed at infections. MS is not an infection so those drugs don't get a lot of play around here.
I wanted to point out that this thread is over a year old. I haven't seen hibbles around in a while. I just don't want you to think she was ignoring you :-)
As to MS, have you seen a neurologist?
Kyle
hi I took 42 pills of levaquin and it blew my nerves like a bomb. I don't know if I had ms before but was always very tired and no exercise ability but no pain except headaches.. I took the lev and I blew apart like a bomb. I have all over pins and needles. I cannot breathe right, my heart pounds non stop.. I would really like to connect with you..
Janet..
who the hell gives 42 pills with prednisone for bronchitis. they have destroyed me and left me in agony 247 I sting and itch all over, for 3 years and cannot tolerate any meds.. I am unable to get any help. I do now have lesions on my brain.. I took over 400 cipro in my 25 years with low grade problems but NOTHING ever almost killed me.. and I wish it had..
***@****
Janet..
who the hell gives 42 pills with prednisone for bronchitis. they have destroyed me and left me in agony 247 I sting and itch all over, for 3 years and cannot tolerate any meds.. I am unable to get any help. I do now have lesions on my brain.. I took over 400 cipro in my 25 years with low grade problems but NOTHING ever almost killed me.. and I wish it had..
***@****
Hey supermum,
I think the confusion started with the way the neurology department handed my initial MRI with symptoms. They said they were "very confident" it was MS, and sent me off promptly to the MS specialist who also seemed quite sure and kept trying to get me to accept my diagnosis.However, he wants to see the second MRI to see how much different it looks than my initial one. I haven't had any blood work or a lumbar puncture yet.
Anyway, this sort of veered off topic about me, when it wasn't supposed to be centered on one person.
I think the confusion started with the way the neurology department handed my initial MRI with symptoms. They said they were "very confident" it was MS, and sent me off promptly to the MS specialist who also seemed quite sure and kept trying to get me to accept my diagnosis.However, he wants to see the second MRI to see how much different it looks than my initial one. I haven't had any blood work or a lumbar puncture yet.
Anyway, this sort of veered off topic about me, when it wasn't supposed to be centered on one person.
Yeah, since I already have a really erratic, rapid heart rate, I suppose I can choose between a slow death and a very quick one.It's very hard to know exactly what to do with everything going on at once, and I do not think that many physicians view the whole person, just the component of their specialty.
Please do not shut out MS meds, the alternative isn't pretty! We all take them, most of us, because MS works 24/7 behind the scenes even when no symptoms are showing
It's like buying insurance, even there, a price rag exists. With ms drugs, the potential side effects are the price tag. There is no free ride.
Perhaps you need a MS support group to help you work thru this. I think the ms website has a one on one mentor program. I know I have a mentor and truly appreciate her. My Tysabri caseworker is also a wonderful support person. She's great!
Give yourself time, it's hard to absorb in a hurry!
It's like buying insurance, even there, a price rag exists. With ms drugs, the potential side effects are the price tag. There is no free ride.
Perhaps you need a MS support group to help you work thru this. I think the ms website has a one on one mentor program. I know I have a mentor and truly appreciate her. My Tysabri caseworker is also a wonderful support person. She's great!
Give yourself time, it's hard to absorb in a hurry!
Hey kwaren,
I see you mentioned medications. They all seem so incredibly dangerous and poisonous to me and I am so afraid to start them!I had a horrible reaction to levaquin in 2006, and I have been very med shy since then, although the only really horrid reactions i had were both to antibiotics - that one and penicllin.
I see you mentioned medications. They all seem so incredibly dangerous and poisonous to me and I am so afraid to start them!I had a horrible reaction to levaquin in 2006, and I have been very med shy since then, although the only really horrid reactions i had were both to antibiotics - that one and penicllin.
Sorry, I'm still getting the hang of this forum and I wanted to greet everyone else as well and thank them for their empathy.
Nice to meet you and thank you for the response.
The neuro originally seemed to be in a bad mood because I kept blowing off my appointments, went home for vacation and started college.I kept delaying things,and he took it out on me when I eventually came back, pacing the hallway and glaring at me every few minutes while the resident did some neurology tests.After that, he gave me the third degree.You know, I really did think it had something to do with my neck, since all of this began the night after i cracked my neck deafeningly loud. I couldn't move my arm the next day, and I still have residual numbness there.
.I didn't appreciate how he started to try to diagnose me as delusional and manic merely because I was nervous.He's very intelligent when it comes to neurology and not psychiatry.Our personalities just utterly clash.However, after the resident explained my diagnosis, he came back, looked at the floor and shook my hand.I suppose it was a bit like handing a bowl of crap smeared cherries to a giddy child.To his defense, however, he was the only one who took my autonomic nervous system troubles seriously and felt it in my pulse.
I don't know, maybe I haven't made the most intelligent decisions, but I just wanted to really live before things went downhill , I guess.
The neuro originally seemed to be in a bad mood because I kept blowing off my appointments, went home for vacation and started college.I kept delaying things,and he took it out on me when I eventually came back, pacing the hallway and glaring at me every few minutes while the resident did some neurology tests.After that, he gave me the third degree.You know, I really did think it had something to do with my neck, since all of this began the night after i cracked my neck deafeningly loud. I couldn't move my arm the next day, and I still have residual numbness there.
.I didn't appreciate how he started to try to diagnose me as delusional and manic merely because I was nervous.He's very intelligent when it comes to neurology and not psychiatry.Our personalities just utterly clash.However, after the resident explained my diagnosis, he came back, looked at the floor and shook my hand.I suppose it was a bit like handing a bowl of crap smeared cherries to a giddy child.To his defense, however, he was the only one who took my autonomic nervous system troubles seriously and felt it in my pulse.
I don't know, maybe I haven't made the most intelligent decisions, but I just wanted to really live before things went downhill , I guess.
It stinks. I send you compassion and validation. I have had challenges all my life. Then in 2009 I was diagnosed with MS and then in 2012 Stage IIIc Ovarian Cancer and a 90% chance of breast cancer. Things are not always fair. I look at what I can do about any situation. Today I do the best I can. last summer I almost died during chemo, today I am one of the 30% of women who get any remission from Ovarian Cancer. I am grateful. I thought MS was the worst thing that could ever happen to me boy was I wrong. I would give anything to say I only have MS.
MS stinks but it is not the end of the world. I live a happy life with both.
Alex
MS stinks but it is not the end of the world. I live a happy life with both.
Alex
I am sorry about your diagnosis. I am new to this online community but you are the first one who clearly spoke of reactions in the medical community,and elsewhere. The only meds I am on currently are advil, an anti depressant, vitamin D and vitamin B. I hope you have many more good days than bad and that you have family and good friends to help you through.
Susie520
Susie520
Hi Hibbles - I'm glad you found us.
It's tough to wrap your mind around having an incurable disease of your central nervous system. It's even tougher when "they" can't even tell you that you have an incurable disease of your central nervous system :-)
You have found a pretty good group of folks like me, who have been diagnosed with MS, and folks like you who are trying to figure out what is going on!?!?!
While I have been officially diagnosed with secondary progressive MS, I don't see my self as suffering. My ongoing symptoms are well controlled by meds. I'd rather not have them, but there isn't a lot I can do about it. When I was diagnosed, "You have ms" came almost as a relief. Now all these seemingly disparate little dots were connected! And I had a single enemy to combat!
We all deal with this differently. We all all have periods where our mantra is "Life Suc*s". we're entitled :-)
How come the neurologist yelled at you?
Kyle
It's tough to wrap your mind around having an incurable disease of your central nervous system. It's even tougher when "they" can't even tell you that you have an incurable disease of your central nervous system :-)
You have found a pretty good group of folks like me, who have been diagnosed with MS, and folks like you who are trying to figure out what is going on!?!?!
While I have been officially diagnosed with secondary progressive MS, I don't see my self as suffering. My ongoing symptoms are well controlled by meds. I'd rather not have them, but there isn't a lot I can do about it. When I was diagnosed, "You have ms" came almost as a relief. Now all these seemingly disparate little dots were connected! And I had a single enemy to combat!
We all deal with this differently. We all all have periods where our mantra is "Life Suc*s". we're entitled :-)
How come the neurologist yelled at you?
Kyle
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Pardon my confusion but are you saying you are dx with MS and the DMD's are under discussion or are you saying your still undx and going through the diagnosis process but due to the MRI so far MS is possible?
Regardless of the answer, I think its possible that your thoughts could be indicating that your falling into depression and if that is even remotely possible, then its important for you to get some help! I know you've already experienced one therapist that didn't work out but that doesn't mean that none will help, the next might just be the right fit for you.
Please don't be put off from seeking help, if that is a problem or a potential problem, mental health issues are a common issue for people dealing with chronic health issues. You wouldn't be alone on this score, we talk openly about everything here :o) and its something many here experience and might be able to help you with if its a need.
The face of MS is an interesting one, life is vastly different from the norm but according to the research the life span today is pretty much on par with the average life span. I have a bit of a hard time thinking in negatives, and trying to think of what i experience as "a slow death" is at odds with how i feel about my life. I've always worn optimistic googles and thats not changed though i think i'd have to say i sort of appreciate things more than i ever did, if thats possible lol I definitely laugh more!
You might find it very helpful to do some specific research about MS (our health pages to the right of your screen are worth reading) and if you've got a specific dx heart condition as well, there are a few members that could answer those questions too.
Cheers...........JJ