Do any of you have any medical conditions that you question are really correct?

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ManiaStar

Senior Member
Nov 14, 2015
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Alright, I do have a medical condition that I was born w/. I've had many tests run on me. MRI's, spinal tests, etc. When I was in 7th grade, they finally "figured out" what I had. They said I had childhood spasticity which basically meant I had continuous spasms in my legs. They stopped the tests since they "figured it out" But, from an early age, I never thougth I really had spasms. All I could ever tell my neurologist was, that I had pain bc he would ask me how bad are the spasms. I always answered, I don't know --- the pain is always btwn a 5-8 on a typical day. He gave me medicine to take and I was on this particular medicine for about 10 yrs which is when my body got used to it and it stopped working. I had been taking up to 21 pills a day at that point. He tried me on other pills which had very bad side affects --- depression, suicidal mainly and I was only on each of those pills for a couple weeks before he took me off them. I finally decided to stop seeing him as I was taken off all medication and since 2008, I haven't been on any medication for the pain But, a few things my neurologist has said from 1996-2008 that have come true. He told me that the pain would increase and spread and it has. I used to only have the pain in my legs. In 2011, the pain went into my feet. In 2012, the pain went into my shoulders/arms/hands and in 2013, the pain went into my chest. For the pain in my chest/arms/shoulders, the pain isn't constant. However, it is constant in my hands, legs and feet. The pain is at an average of 7-8 everyday 24/7 but, when I have flare-ups --- those can be absolutely horrible and the pain increases dramatically.

I have no idea when the flare-ups will hit or what parts of my body will be affected.

This past Thurs, I had gotten a flare-up and i'm still having the affects of it. I felt the onset of a bad flare up come up on Thurs morning, in my chest. I was experiencing pain, shortness of breath and felt lightheaded. Thurs was the worst day but, fri-today, I'm still feeling it and today I went to the park and, had a scary time as I had quite a bit shortness of breath.

I made an appointment w/ a new neurologist for this tues afternoon. I am sorta looking forward to seeing her, but, also a little nervous. I have everything written down that I can show her about my past medications and the past things different doctors Thought I had but, I don't know how to truly figure out what I have as I don't think I have Spasticity, but, who knows.

Another thing my previous neurologist told me that is scaring me still is, he told me by the time I reach age 39, I'll be in a wheelchair. I'm scared of that. I am an active person and I remember when he initially told me about that, inwardly I was like no, that will never happen but, now, the closer I am to nearing that age, and seeing how my doctor was correct about this problem spreading to other parts of my body, well, I'm just scared and now w/ the pain in my chest and the shortness of breath, I'm just more nervous.

Do any of you have any medical conditions that you have that you question that the doctors got it correct?
 
I am praying for God to perform a medical intervention on your condition so that the pain can lesson and your overall condition improve. Doctor's are not prophets but only can offer an educated opinion as to what the future holds. I pray that your future is bright with full use of your legs and no pain.
 
Well, about 10 years ago, my doctor told me I would be in a wheelchair within 5 years. Now it's 10 years later, and no wheelchair in sight, so I guess he got that one wrong after all.. lol
 
Every single thing any doctor has ever told me.
Lol that's not true but the list is too long
 
PLEASE NOTE: The following is not meant to trivialize the problems expressed in the OP.

I know some diagnoses are for things that didn't exist a few years ago, simply because insurance would not have paid for it years ago. Some things people used to just deal with in the good old days, but now there are medical names for them so we can charge for treating them. I hear of treatments all the time for things that are now official medical problems, that people used to just accept as a normal part of life. Restless Leg Syndrome for example.

Also there is strong pressure on doctors to diagnose something that you can prescribe a pill for. PLEASE NOTE: I'm not saying doctors are greedy money-grubbers out to milk your insurance for all it can pay. But the pressure on them to do so is there.
 
blue_ladybug said:
Well, about 10 years ago, my doctor told me I would be in a wheelchair within 5 years. Now it's 10 years later, and no wheelchair in sight, so I guess he got that one wrong after all.. lol
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that's awesome!! I'm glad he got that wrong
 
tourist said:
I am praying for God to perform a medical intervention on your condition so that the pain can lesson and your overall condition improve. Doctor's are not prophets but only can offer an educated opinion as to what the future holds. I pray that your future is bright with full use of your legs and no pain.
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Thank you --- I always try to remain positive but, sometimes it's just difficult because of the things I'm going through but I am also hoping this new neurologist will be able to help me but not just prescribe medications to me which I know she will anyways. I'm just hoping she'll listen to me and be able to offer up some new ideas or something.

I had just told one of my friends about this shortness of breath/chest pain. He said it sounds like anxiety attacks but, where do anxiety attacks come from? I shouldn't be getting those but, let's say it is that, is there anything I can do to get rid of them?
 
So everything your old neurologist has said had come true, but you think he's wrong about his diagnosis? Or is it you don't want him to be because you don't like the next step in the prediction?
 
Doctors are fallible human beings they don't know all the answers. Their
responses are based on text book progression of diseases and illnesses but
not on individual circumstances. They have to give some idea to patients to help with
knowledge and expectations, but each individual case is different.

Ps don't rule God out of the equation, God overrules text books and doctors.

I was told my elderly aunts death was immanent in October 2015. They put DNR
on her records. She is alive as we speak and doing better than ever thanks to God.


A friend had progressive breast cancer, she has learning difficulties and didn't tell
anyone she had found a lump. By the time she sought medical help it had spread.
That was 3 years ago she is still alive and looks fabulous but she was told she may
not get over this. God answered pray.


I have another friend diagnosed with overian cancer which generally has a poor prognosis.
It usually spreads before it's discovered. That was 4 years ago, She is doing very well
and she bucked the trend during many aspects of her treatment. She didn't even lose
her hair during chemo.


To the OP go to the doctors but also pray and ask God for wisdom and healing.
God's word is the final word not a doctor's.
 
Ugly said:
So everything your old neurologist has said had come true, but you think he's wrong about his diagnosis? Or is it you don't want him to be because you don't like the next step in the prediction?
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Only bc the pain doesn't feel like spasms. He always referred to my pain as spasms but I usually don't get spasms as I know what they feel like as I get them every once in awhile but my reg pain isn't spasms. He said my muscles jump and my muscles are spastic causing the constant spasms.
 
Perhaps you should get another professional opinion if you have doubts on your diagnosis
 
Hellooo said:
Perhaps you should get another professional opinion if you have doubts on your diagnosis
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Yes --- tomorrow i actually have an appointment w/ a new neurologist for a consultation. I'm just not sure if I should tell her anything or show her any of the papers/medications I had been on w/ my previous neurologist or, should I have the consultation w/ her first, let me get her view of what I could possibly have and then show her all the papers?

What do you think would be best?
 
I've been in the medical field my whole life. The best thing to do is let this neuro know you are seeking a second opinion. Don't offer your records right away...let the Dr. ask you questions and answer as honestly as you can, and don't forget to write down questions and concerns of your own. If you feel there are things not matching up with your past treatment...go ahead and pull out your info and present it then. Hope this is helpful. God bless.
 
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