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WHAT DO YOU THINK, DR LAVA
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readyfordx posted:
Dear Dr Lava, would you please read the discussion below called "AGREE OR DISAGREE" and give me your opinion..I know it is hard to give much info to something you are not "hands on" involved with but I would like to know what you think.

Also, please know that I am positive Factor V blood disorder also. I think I have all the symptoms of MS ever listed except for the shocking pain going down my neck, and into my legs. and they all seem to be getting more intense..

Thank you for your time.
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readyfordx responded:
6 hours ago AGREE OR DISAGREE readyfordx posted: I have had MRI of C Spine, T Spine, and Brain. Spine clear, brain in comparison to the one I had one year ago..no change. But many more intense symtoms that never go away. The ones lately are severe muscle spasms, vertigo with nausea & vomitting, burning pain in muscles, severe pain in feet especially left foot, tingling in both arms and hands.

Neuro confirms I have auto-immune but does not think it originated in CNS even though it has now affected the CNS..sending me to an immuniologists to see where disease originated , he thinks systemic. What do you think? shoudl I care wher it originated, I just want treatment..is that wrong?

Love to have your opinion..
 
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readyfordx responded:
My first MRI shows that I have 5-6 lesions but have been told they are old lesions...no new active lesions.
 
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Graceonline replied to readyfordx's response:
Dear Readyfordz

I am obviously not Dr Lava - though trust you do not mind my replying to your post as I sense concern in your posting around wanting treatment and if this is wrong or not.

From what you write it would appear your doctor is being most thorough in his referring you for further investigations. This is good.

It is likely he is doing this to ensure an accurate diagnosis for you. This too is good.

All going well, hopefully then, your doctor will be more informed regarding (not only a diagnosis), but also regarding the most suitable treatment options for you if required. This is not wrong. It is responsible.

I wish you all the best for your pending examinations etc.

Kind Regards

Grace
 
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readyfordx replied to Graceonline's response:
Thank you, Grace for your comments..I do not mind at all your opinion. I agree with my neuro's concern I guess I am just so tired of feeling bad and just want some answers.

I just want to know I am not going to fall-through-the-cracks as so many patients do. I have worked in the medical field for 30 years and I know how it can easily happen (not really meaning to but it does) and I know that you have to sometimes be your own advocate. I have seen three neuros, one infectious disease dr, one rheumatologists, three urologists, and my general practitioner..have had many tests, MRIs, mountain of blood work, and I guess I am just tired. I don't mean for it to sound like I am just wanting to have a label put on this illness I am dealing with, I just want to feel like my old self again, is that possible?

I also have a concern that the longer this thing goes untreated the more permanent damage is being done.

Thanks again for your concern.

Judy
 
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Graceonline replied to readyfordx's response:
Hi Judy

Thank you for your warm reply to my posting.

Some big questions you have and rightly so. Are you ever going to feel like your old self again you ask.

I have asked myself this question before also - as I gradually continue to find limitations in previous areas of confident functioning. I have learned patience is critical, though don't lose your innate sense of being self assertive in seeking what you are searching for.

Just know, as I expect you already do having worked in the medical arena for 30 years, that when there is a complicated symptom complex, diagnosis which is essential before treatment can commence, is also complicated and sometimes very drawn out.

I agree many fall through the cracks as you put it, though you do not strike me as someone who is going to increase this statistic - you seem too intelligent.

As for your concern inasmuch as more permanent damage may be occurring the longer the delay in diagnosis, also remember that stress plays a part in relapse of some conditions and take care of yourself.

Living in a cloud of uncertainty can be extremely frustrating, especially when we find ourselves in situations we may feel we have no control over the outcome.

Keep your common sense and intelligence about you.

Take care and thank you again for allowing me to share my comments with you. I am new to this forum and have gained from others, it is nice to be able to give something back in return.

I wish you the answers you seek in the coming days/weeks.

Warm Regards

Grace
 
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readyfordx replied to Graceonline's response:
Thank you also for your remarks which have given me alot to think aobut..I don't want to add to the problem by adding unnecessary stress and I also agree that stress can sometimes just make things harder for us.

I am going to try to limit my stress, we all have some we can control and I am going to do that and be patient for the RIGHT answers, after all I have been dealing with this problem for several years just not to this extreme.

Thanks again for your comments. By the way, you are right about me not allowing myself to fall through the cracks, I am much too stubborn for that. ha

God Bless and keep you safe.

Judy
 
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Graceonline replied to readyfordx's response:
Hello again Judy

Great to hear from you and I would not be surprised if you could not hear my laughing out loud re your comment about being too stubborn to fall through the cracks. Good for you.

For what it is worth I enjoy yoga for a form of stress management. You are indeed correct re there also being some stress we don't or can't control. I know with great certainty there is some stress at times I don't manage that well at all and should be looking for alternate outlets myself. Usually this is when I find myself in situations not having the information I seek and feeling as though I am not a party to my treatment or able to have as much control over the pace of investigations as I would like! Sound familiar to you by any chance?

Work colleagues gave me a beautiful St Christopher's medallion when I resigned before jet setting around the globe. I have it to this day in my wallet, though it is starting to wear from rubbing against the leather of my wallet, I do believe it has not yet failed me!

Just like you mention a stubborn steak in yourself, I also sense an endearing and kindred spirit in you - and wish a return of spirited energy, laughs, hugs and smiles with family and loved ones.

I wonder what you would reply if asked the question, what is the most important thing to you in life. Ponder this when you find your choice of relaxation strategies if you like, it's amazing where it can lead your thoughts!

Anyway, my eyes have reached their limit for today. It has been great exchanging lines with you. Thank you for this.

Same to you Judy, travel safe and stay healthy in mind, body and spirit.

Grace
 
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Graceonline replied to Graceonline's response:
Hi Judy

I have Hey Jude playing in the background, thought I would touch base to say hi and wish you a good weekend.

Regards

Grace
 
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readyfordx replied to Graceonline's response:
Hey Grace..took a rest for the weekend..needed it bad. Having a tough time right now..all symptoms are very active. Still no diagnosis but trying to hang in ther.

Lots of symtoms this morning..going to get through the day at work and can't wait to get home to my chair and just relax. Too early in day to be thinking this way. huh?

Thanks for thinking of me "Hey Jude" love that song.

Judy
 
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Graceonline replied to readyfordx's response:
Hey Jude

"Take a sad song and make it better"

Took a punt you may like this tune hence sending my post to you when it came on.

Well this is my third post to you today. I work from the top of the list to the bottom. Talk about being set in my ways!

Have you ever listened to any music of Regina Spektor by any chance or Diana Krall? Both obviously female singers and play piano. If you like violin I especially like Lucia Micarelli and opera Filippa Giordano (she will both delight and surprise you if you have pre conceived ideas about opera).

However, if you want something to rock and roll you out of the blues so to speak, I turn up the volume on Joan Armatrading, Petula Clark and good old Louis Armstrong amongst a few. Can't beat 'oh when the saints' and 'under the old apple tree'!
M People are also great - some of the lyrics are soooo inspiring.

Keep the sunshine in your stride Judy, no matter how inclement and weather worn your soul may feel. It's not fair some days I know, but I trust you will dance to the beat of your heart regardless of what may be thrown at you in life.

Warm Regards

Grace
 
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readyfordx replied to Graceonline's response:
Now a days, I seem to lean towards something soft and piano that is soothing and relaxing...I will check into the ones you have mentioned..seem to be gravitating towards quiet peaceful times right now rather than rock n roll..

I WILL keep the sunshine in my stride, thanks for that bit of encouragement..and I will stand strong through this adventureous journey..

Judy
 
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hackwriter replied to readyfordx's response:
Judy,

I'm a former jazz and classical musician--and I now only listen to Gregorian chant sung by Benedictine monks.

If you want soothing and meditative, I highly recommend purchasing their CD on Amazon. It's inexpensive and effective.

Kim
 
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readyfordx replied to hackwriter's response:
Will do..writing in down now.
 
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Graceonline replied to readyfordx's response:
Hi Judy

Enjoy musical suggestions and Kim, I will check out your suggestion.

Thanks ladies.

Regards

Grace


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