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lmb
Regular Member


Date Joined Aug 2006
Total Posts : 48
   Posted 8/21/2006 6:23 PM (GMT -6)   
hello...i have been sick for 2yrs and they do not know what it is...they say no to ms b/c my scans show no signs but also off the record they kinda keep the idea alive b/c they feel it may not show up for a long time so if u guys could please tell meabout ur expriences with ur symptons and dianosis and how long it took for it to show up and things like that it would really help me alot in my investigation into the illness that is now a very definative part of my life but still has not real name...thanks for ur time and consideration

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/22/2006 3:55 AM (GMT -6)   

You might want to start by reading this thread:  http://www.healingwell.com/community/default.aspx?f=32&m=457357

which will begin to answer your questions about the diagnosis process and what a doctor looks for, to make such a diagnosis.

Yes, it can take a very long time, sometimes, to get a diagnosis, as there are lots of disorders, some of them neurological (like MS), others metabolic (like diabetes, thyroid problems,) that look alike from the outside, and which can affect you in many of the same ways.

Apparently you've had some testing done already at a neurologists office?  Why don't you tell us what you've had done already, and maybe we can offer suggestions about what else you might consider.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


lmb
Regular Member


Date Joined Aug 2006
Total Posts : 48
   Posted 8/22/2006 8:03 AM (GMT -6)   
i have had every tests u can think of ans some of them twice...MRSs...bone scans...x rays....thousands of blood tests...spinal tap...etc. etc....they said it was not ms but then they still make me think that they are only ruling it out b/c the tests are not showing anything b/c ms and lyme are the only illnesses that are exactly what i have had happen to me and more so ms fits the symptoms to a tee but they cant say thats what it is unless something comes up on my scans so they say i have to keep having them done every year and they thinks its crazy that ive had such advanced symptoms when the liasions are not showing up in the scans so they basically call it fibromyaligia at this point but thet dont seem sure of that either its just the best thing they can come up with for now...ive seem lots of different types of doctors and neurologists as well but i just wondered if u all have had anything like that happen to u others i have talked to said they have but it just seems that my last really bad flare up was so advanced that if it is ms u would think it would show up but it isnt so i wondered if u guys had that problem and how long it took fors ur scans to show anything..i know ms is different for people but i just thought i would try to keep researching to prepare for whatever it may be and also to make sure there are not any tests that i have not had (even though i doubt it scince ive seen so many drs im tired of looking at them..lol) and how bad ur symptoms were and how long it was before ur scans showed something...tthx for ur help

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 8/22/2006 8:24 AM (GMT -6)   
What are the symptoms you're experiencing so we can get a better understanding of what you mean when you say you've been sick? There are many people on this board that can tell you it's taken them sometimes years to get a definite dx's of MS.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/22/2006 9:06 AM (GMT -6)   
Are you seeing ONE doctor, and continuing to advise him of symptoms..or are you seeing lots of different doctors, or going from doctor to doctor? If you stick with ONE doctor, who can watch you over time, and see if a pattern of symptoms develops, it might be more helpful for you.

Fibromyalgia is a very real disorder, by the way. And it may in fact be the closest "they" can come to diagnosing you, if lesions don't show up on an MRI, and other tests come back with negative results...
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/22/2006 9:07 AM (GMT -6)   
By the way, two years isn't really all that long to reach a diagnosis. As somebody already said, there are folks here who have gone for years waiting for something more definitive to show up, before a doctor will diagnose MS or something else.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


lmb
Regular Member


Date Joined Aug 2006
Total Posts : 48
   Posted 8/24/2006 8:29 AM (GMT -6)   
well i dint mean to seem like i was the only on who has been waiting for a long time to get a diagnosis i want implying that i was more important or anything like that but for my two yrs is a long time to wait and live much differently than i am used to and lose all the things i had worked hard to gain and even though i have gotten to a point where i am building my life back around this illness and am emotionally dealing very well with it..it is always hard to deal especailly when u would like answers and i know that fibo is real and it is the best they can give me right now and im not complaining im just looking for thoughts from others...yes i have one doctor i see but i also have specialists to do tests every yr b/c they want to keep looking to see if leisons show up or not....as for symptoms i could write a book of theings that have happned so i guess ill start from the begining so that u can better understadn what i mean when i say i been sick....about 3yrs ago i woke up one moring with terrible pain all over and thought it was just a flu but then it got unbearable i could not even stand sometimes so i went to the dr he thought it was auto immune and gave me antibiotics,pain meds and steriods and with in a week i was fine...i was not able for the next yr to have as much enery to keep up with my busy life but i didnt think much about it so about 2 ys ago i was feeling very aggrevates my nerves were tingling like little ants in there or something so i went to bed and woke up the next mreoign with the terrible pain so i went back to the dr and we tried the same thing as before and i tried to push through it like i did the first time but it kept getting worse it got so bad i could not move a finger without screaming in horrifying pain so i was hospitalized twice and they got it back under control to where it was just awful but i could move without screaming then i fell in the hospital and from that point had trouble with balance and had to use a walker then i would lose control of my body parts and muscle spasams where i would hurt myself b/c my body jerked so much and then there were days i could think and i would go into a daze and then there were times where i would lose control of eye movement and i had one incident where i went blind for 3 mins and then there are still days where i cant see very good then there were incidents where my body parts would not work and i couldnt get a fork or spoon to my mouth and i could pick something up even though i tried but it was like my ablitly to judge where it was was off and id grab at air..there are times when my legs would just drop me ont he ground and i could use them or move them for several days there were times i could not do math or tell colors and there have been times when i was so confused and could say what i needed to say i couldnt get the words to comeout right and there were several times that i passed out and had 2 incidents that i could not breath well and had to be hospitalized there were also times when my legs and feet were purple and swollen severly to where it was hard to use them...the worst pain has always been in the base of my neck and down my spine and legs and hands..there were also times when i got wierd tingling in my areas of my face and head and lost control of my eye movements but now i am doing better but thast just recently i have alot of pain but my meds keep it to a tolerable level i can walk on my own and still have to stop walking sometimes to get my brain to catch up and my feet are still very sensative and my legs and feet still swell and turn purple a little there are still days where i get confused and cant speak correctly and the chronic fatigue and pain and my nervous systems is always going crazy even though im on meds to help it and there are still days when it gets really bad but i havent had any of the incidents where i can walk or extreme muscle spasams for awhile just small knot like spasams and i have sensitve bladder and spasmans in the smooth muscle aroung my kidneys and they say it is overactive bladder and spasams when they did the tests but it seems like its really hard for me to tell i have to pee unless im bout to bust but i do have to go alot and dont alwasy get it all out or i feel like i have to pee and i sit for several minutes before i am actually able to...i guess thats about all the things that happen i may have forgoted some scince there are so may it makes my head spin but i hope this helps u all in understanding why i was asking about when u were diagnosed and things like that i am just trying to research the things they think are possibly wrong with me and yes ive seem lots of different kinds of doctors and they are at a loss for what is going on b/c all my tests are negative and so i am just looking for people who understand and maybei can find info that will help me and my primary doctor in our search..thanks for ur thoughts
lmb
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