Aa
multiple sclerosis please help need answers
i have posted 2-3 discussion in different forums and have had little or no response, am i doing something wrong here !!!! Wanted to ask a question, have been sick for many years, many years poor and no insurance - kids came first, yes that is right, didnt take care of myself, i am reminded of this every day.
ok-went to neuro last week, havent seen one in 12 years or so, have seen every other specialist there is, after exhausting 6 year search for what is wrong with me, (all is good with me other than recent blood test revealed positive ana and high crp) (inflammation)
Neuro seems to think i could have MS and i am afraid so too, i will be honest i went straight to the National MS society and this forum when i got home from the doctors office, who dont these days, I could have written their symptoms list and then some- please tell me what you think-i am going crazy and until someone can confirm that i am not i wont rest. I have been sick for so long and told i had fibromyalgia or it was in my head i could scream-
CAN ANXIETY CAUSE THE PROBLEMS BELOW OR IS THE NEURO ONTO SOMETHING...
about 15 years ago i started having stiff neck, migraines, severe bouts of depression and fatigue-had emotional problems as i was in a bad bad marriage for 17 years !!! The above mentioned problems were there and came and went over the years adding severe pain in feet (tingling, numb, burning, throbbing itching) (i weighed 110 lbs.)
i was also having some female problems and contributed the above to stress and female problems- also according to an MRI i had 4 bulging disc - have had sciatica and pinched nerve once.
fast forward a few years (i am having major memory problems) about 6 years ago after bouts of the above you can add the following, they have either came back or become more severe and/or i have developed new symptoms, i know you are not doctors here goes, i can be ok one day and be in severe pain the next .................
the heat i produce from exercise makes me sick being outside in this fine alabama heat and humidity kill me
i often feel like i have fever-no fever, my body temp is messed up or something-often have head in the oven feeling
neurothapy in feet-(dx neuro)
i am not diabetic and yes i need to loose some weight as i have put on 50 lbs. in last 6 years, --my feet hurt so bad on the bottom i can hardly walk somedays (most days)
severe fatigue, flares of some sort-
brain fog- really bad-to the point i dont drive much anymore
pain, burning, crawling sensations, electric like jolts in my arms, legs, ect.
stabbing pain in head- scalp crawls and feels like it is on fire in the sun
buzzing in right ear and ear pain
face goes numb, lips, bite tongue and cheeks constantly
twitches itchingggggggggggggggg - especially face -
frontal and rear neck pain - also rear neck pain that causes severe migraine
nausea, ibs, (BAD)
i use to have to go to hospital and get cathed to get urine off my bladder now it flows freely, i have no control of it, last year it was my bowels ?
right side is prob weaker than left, i use to be really strong and fit and now i am weak
pain in front of neck runs under my jaw line
heart palpitations, shortness of breath sometimes
sexual disfunction, just leave that there
stiff and sore when i wake up-
insomnia - even with sleep meds
i either sleep for months at a time or dont sleep more months-never sleep good at anytime
stabbing pain in head and face
buzzing in ear
a little paranoia ????????????????
my lips flutter and it is not voluntary ? Trimingeal nerve ????
did i mention i pee all over myself, i mean i can stand up out of bed or wake up in the am and i am covered - have to constantly change clothes-yes the neuro is going to check my kidneys thursday
i am sure i forgot something but could this be advanced progressive stages-i am sure i have forgotten something as i cannot remember anything. my whole life has changed, i cannot do anything i did before
oh i forgot, tremor-mostly you cant see them but i can feel them, they dont hurt, and sometimes you can see them in my right hand-my right side seems to have been effected by whatever.
i am really worried about this-i can be right in the middle of a conversation and go blank, this is very embarrasing. I can literally think of something knowing i need to write it down reach for pen and paper (right beside me) and have forgotten already what i was going to write down. i often find myself in a room and i dont know why im in there and am usually in the wrong place that i intended to be.
i cannot do any work because of severe pain by end of day or by the end of the day i am exhausted and this can be even with little activity
DOES ANY OF THIS RING A BELL-I KNOW NO CASE IS TEXT BOOK, BUT MINE SEEMS TO BE-OR AM I CRAZY LIKE SOME PEOPLE HAVE SAID
sorry for all caps - my vision is very blurry, this is new and by the way i can look at a color sometimes say it should be yellow and i know that it is yellow but in my eyes it is white, i often see colors that arent there and my eyeballs are killing me every morning i wake up-
in the last year i have aged 10 years in appearance and people have made comments i look swollen all the time and/or i look different, im exhausted, mentally and psyically-
help please very anxious and dont know why other than pain and disappointment ! have no money problems, in a great marriage, good kids, all is good except my health i am 44 years old and i feel 64-my 74 year old mother is in better shape than me-i know i am babbling but i am in shock, i thought i had lupus or something-rheumy says i dont-NOT ra, sjogrens, thyroid is fine, no more female problems, had total hysterectomy and blood hormone levels are fairly good, i do have carpel tunnel in right and left ?
ok-went to neuro last week, havent seen one in 12 years or so, have seen every other specialist there is, after exhausting 6 year search for what is wrong with me, (all is good with me other than recent blood test revealed positive ana and high crp) (inflammation)
Neuro seems to think i could have MS and i am afraid so too, i will be honest i went straight to the National MS society and this forum when i got home from the doctors office, who dont these days, I could have written their symptoms list and then some- please tell me what you think-i am going crazy and until someone can confirm that i am not i wont rest. I have been sick for so long and told i had fibromyalgia or it was in my head i could scream-
CAN ANXIETY CAUSE THE PROBLEMS BELOW OR IS THE NEURO ONTO SOMETHING...
about 15 years ago i started having stiff neck, migraines, severe bouts of depression and fatigue-had emotional problems as i was in a bad bad marriage for 17 years !!! The above mentioned problems were there and came and went over the years adding severe pain in feet (tingling, numb, burning, throbbing itching) (i weighed 110 lbs.)
i was also having some female problems and contributed the above to stress and female problems- also according to an MRI i had 4 bulging disc - have had sciatica and pinched nerve once.
fast forward a few years (i am having major memory problems) about 6 years ago after bouts of the above you can add the following, they have either came back or become more severe and/or i have developed new symptoms, i know you are not doctors here goes, i can be ok one day and be in severe pain the next .................
the heat i produce from exercise makes me sick being outside in this fine alabama heat and humidity kill me
i often feel like i have fever-no fever, my body temp is messed up or something-often have head in the oven feeling
neurothapy in feet-(dx neuro)
i am not diabetic and yes i need to loose some weight as i have put on 50 lbs. in last 6 years, --my feet hurt so bad on the bottom i can hardly walk somedays (most days)
severe fatigue, flares of some sort-
brain fog- really bad-to the point i dont drive much anymore
pain, burning, crawling sensations, electric like jolts in my arms, legs, ect.
stabbing pain in head- scalp crawls and feels like it is on fire in the sun
buzzing in right ear and ear pain
face goes numb, lips, bite tongue and cheeks constantly
twitches itchingggggggggggggggg - especially face -
frontal and rear neck pain - also rear neck pain that causes severe migraine
nausea, ibs, (BAD)
i use to have to go to hospital and get cathed to get urine off my bladder now it flows freely, i have no control of it, last year it was my bowels ?
right side is prob weaker than left, i use to be really strong and fit and now i am weak
pain in front of neck runs under my jaw line
heart palpitations, shortness of breath sometimes
sexual disfunction, just leave that there
stiff and sore when i wake up-
insomnia - even with sleep meds
i either sleep for months at a time or dont sleep more months-never sleep good at anytime
stabbing pain in head and face
buzzing in ear
a little paranoia ????????????????
my lips flutter and it is not voluntary ? Trimingeal nerve ????
did i mention i pee all over myself, i mean i can stand up out of bed or wake up in the am and i am covered - have to constantly change clothes-yes the neuro is going to check my kidneys thursday
i am sure i forgot something but could this be advanced progressive stages-i am sure i have forgotten something as i cannot remember anything. my whole life has changed, i cannot do anything i did before
oh i forgot, tremor-mostly you cant see them but i can feel them, they dont hurt, and sometimes you can see them in my right hand-my right side seems to have been effected by whatever.
i am really worried about this-i can be right in the middle of a conversation and go blank, this is very embarrasing. I can literally think of something knowing i need to write it down reach for pen and paper (right beside me) and have forgotten already what i was going to write down. i often find myself in a room and i dont know why im in there and am usually in the wrong place that i intended to be.
i cannot do any work because of severe pain by end of day or by the end of the day i am exhausted and this can be even with little activity
DOES ANY OF THIS RING A BELL-I KNOW NO CASE IS TEXT BOOK, BUT MINE SEEMS TO BE-OR AM I CRAZY LIKE SOME PEOPLE HAVE SAID
sorry for all caps - my vision is very blurry, this is new and by the way i can look at a color sometimes say it should be yellow and i know that it is yellow but in my eyes it is white, i often see colors that arent there and my eyeballs are killing me every morning i wake up-
in the last year i have aged 10 years in appearance and people have made comments i look swollen all the time and/or i look different, im exhausted, mentally and psyically-
help please very anxious and dont know why other than pain and disappointment ! have no money problems, in a great marriage, good kids, all is good except my health i am 44 years old and i feel 64-my 74 year old mother is in better shape than me-i know i am babbling but i am in shock, i thought i had lupus or something-rheumy says i dont-NOT ra, sjogrens, thyroid is fine, no more female problems, had total hysterectomy and blood hormone levels are fairly good, i do have carpel tunnel in right and left ?
hi im new to the site. going for a spinal tap on Monday-more afraid of that than diagnosis of ms-which my doctor has already told me that I have a mild case of. im currently taking prednisone and lyrica -helping a little. but he will start me on meds as soon as my spinal tap comes back.
my issues is more with treatment. I have tried to educate myself as much as possible. in the end its my decision. I have to work full time and no family support or extra income. if the disease is so horrific and meds are costly, was just wondering how do people make it on a daily basis. and is anyone having good results with the meds?
I appreciate any feedback-thanks guys
my issues is more with treatment. I have tried to educate myself as much as possible. in the end its my decision. I have to work full time and no family support or extra income. if the disease is so horrific and meds are costly, was just wondering how do people make it on a daily basis. and is anyone having good results with the meds?
I appreciate any feedback-thanks guys
I can not tell you how GLAD I am to have you on here!!!! I truly thought I was reading my biography! Every single thing truly is what I have been going through! I am 43, have 2 children the same ages and was a Legal Secretary/Assistant!!! I literally had goose bumps reading your posts and shaking my head through each one. We truly are living the same lives and living the same experiences.
I have been dealing with these issues since May of 2009 and still not diagnosed with MS, but it is at they say "at the top of the list". I have gotten quite a few other diagnosis along the way though, lucky me!
Anxiously awaiting your MRI brain results. Hoping to speak with you soon!
I have been dealing with these issues since May of 2009 and still not diagnosed with MS, but it is at they say "at the top of the list". I have gotten quite a few other diagnosis along the way though, lucky me!
Anxiously awaiting your MRI brain results. Hoping to speak with you soon!
I agree. JJ is not picking on you. You really need to stop analyzing every word to see if harm was meant, because none has been, by JJ or anyone else who has responded to you.
This is a wonderful forum full of knowledgeable and kind people. I've been here 6 years, so I know.
Please just accept that an internet forum has its limitations. No one here can diagnose you. All we can do is ask questions and try to understand what's happening so we can share the knowledge we've gained. When there are undercurrents and hurt feelings that just makes it harder for anyone to help.
If you could try to tone down emotions in your posts and stick to facts, I think things will go a lot better for you. If there are any other medical issues you haven't yet mentioned, try to do that, and after that people who have ideas will get back to you.
Best wishes,
ess
This is a wonderful forum full of knowledgeable and kind people. I've been here 6 years, so I know.
Please just accept that an internet forum has its limitations. No one here can diagnose you. All we can do is ask questions and try to understand what's happening so we can share the knowledge we've gained. When there are undercurrents and hurt feelings that just makes it harder for anyone to help.
If you could try to tone down emotions in your posts and stick to facts, I think things will go a lot better for you. If there are any other medical issues you haven't yet mentioned, try to do that, and after that people who have ideas will get back to you.
Best wishes,
ess
Oh, Kelly! I am SO SORRY you read JJs comments as criticism. I've only been on this forum a short while but have read many of her posts and she's answered some of mine. She is such a caring person and I think she just wants to help you.
For me, she asked you the questions I was wondering. And the reason I was wondering is that I was posting frantic long messages not so long ago. Kelly, I was stressed with finances, and new NP wasn't great first appt (but was great on on FU).
I thought I was.crazy. I felt crazy. I was angry, sad, situationally depressed. And the physical sx were very bad. All of this comes with MS and more. Mental health with MS is a big issue and we have to look after ourselves. I read in JJs post that she was sorting through your symptoms and, like me, she could see a very high anxiety level and was genuinely concerned.
I truly do believe that EVERYONE on this forum has the best interests of everyone else at heart. We are just MSers trying to help our fellows and those on the dx journey.
Please get EVERYTHING checked out, Kelly. You are you're best and main advocate.
Blessings to you.
For me, she asked you the questions I was wondering. And the reason I was wondering is that I was posting frantic long messages not so long ago. Kelly, I was stressed with finances, and new NP wasn't great first appt (but was great on on FU).
I thought I was.crazy. I felt crazy. I was angry, sad, situationally depressed. And the physical sx were very bad. All of this comes with MS and more. Mental health with MS is a big issue and we have to look after ourselves. I read in JJs post that she was sorting through your symptoms and, like me, she could see a very high anxiety level and was genuinely concerned.
I truly do believe that EVERYONE on this forum has the best interests of everyone else at heart. We are just MSers trying to help our fellows and those on the dx journey.
Please get EVERYTHING checked out, Kelly. You are you're best and main advocate.
Blessings to you.
Hi Kelly -
I have been involved in many, many internet forums. From cooking to baking to cats to photography to MS, I've participated in related forums.
This MedHelp MS forum is by far and away the most civilized and constructive in which I have ever participated.
2 years ago I was, like you, in search of all the MS info I could find. I was on the verge of being diagnosed and scared witless. When I found this forum I found others who were in the same place as me, and others who had been there, done that. They were patient, understand and informative.
One of the challenges we have here is helping sort symptoms out. There is no definitive list of MS symptoms, but our cumulative experience gives us a pretty good working list.
JJ is very good at cutting to the chase. At times this may seem curt. She is not :-) She's been around a while and is a Community Leader. In order to help people sort things out questions may be asked that seem inappropriate or mean spirited. They're not :-)
People come here seeking advice, counsel and knowledge. I have gotten all three here, some of it provided by JJ :-)
Kyle
I have been involved in many, many internet forums. From cooking to baking to cats to photography to MS, I've participated in related forums.
This MedHelp MS forum is by far and away the most civilized and constructive in which I have ever participated.
2 years ago I was, like you, in search of all the MS info I could find. I was on the verge of being diagnosed and scared witless. When I found this forum I found others who were in the same place as me, and others who had been there, done that. They were patient, understand and informative.
One of the challenges we have here is helping sort symptoms out. There is no definitive list of MS symptoms, but our cumulative experience gives us a pretty good working list.
JJ is very good at cutting to the chase. At times this may seem curt. She is not :-) She's been around a while and is a Community Leader. In order to help people sort things out questions may be asked that seem inappropriate or mean spirited. They're not :-)
People come here seeking advice, counsel and knowledge. I have gotten all three here, some of it provided by JJ :-)
Kyle
I understand and LOL after she mentioned MS of course i came home and googled it right away which led me to this site, and i learned right away those other web sites has conflicting information all those good web sites
I have learned I am going to have to be my own advocate from you and to ask, ask, ask,. I am trying to arm myself with as much knowledge as i can so i can be better be prepared for what is coming and most of all just to learn more about the brain and spinal cord, i had not realized just what all our little brains can do or not do for us- good day
I have learned I am going to have to be my own advocate from you and to ask, ask, ask,. I am trying to arm myself with as much knowledge as i can so i can be better be prepared for what is coming and most of all just to learn more about the brain and spinal cord, i had not realized just what all our little brains can do or not do for us- good day
Kyle this is me exactly thank you so much, this is why I wondered if I was the crazy one or what. I know this pain is real, i know i cant feel my right leg and foot off and on all day. I know the base of skull is hurting so bad everyday i could scream. I cant even left my shoulders over my head at this poiint to put on a shirt.
If anyone might have an answer for this, around June I had an MRI of my neck because of the pain. I can literally move my neck and hear and feel bone grinding. Why would my neck MRI show nothing, i just find that so odd. Anyway, i think i told yall that the doctor told me he was getting an MRI of my back and neck, he wrote the order wrong and all they did was my neck, i just found that out about 2 months ago.
I am picking up a copy of all my records today that i can if they are not too expensive, have a good day
Thank you so much, off to get that MRI of the brain i havent gotten in years.
If anyone might have an answer for this, around June I had an MRI of my neck because of the pain. I can literally move my neck and hear and feel bone grinding. Why would my neck MRI show nothing, i just find that so odd. Anyway, i think i told yall that the doctor told me he was getting an MRI of my back and neck, he wrote the order wrong and all they did was my neck, i just found that out about 2 months ago.
I am picking up a copy of all my records today that i can if they are not too expensive, have a good day
Thank you so much, off to get that MRI of the brain i havent gotten in years.
JJ, you hesitated to mention what I myself was thinking! I thought you were thoughtful and kind.
I still find myself at times beyond my stress threshold (usually because of work) and find myself getting frantic. That brings on worsening cog fog, swallowing issues, pain... Well, I think it makes everything worse.
Getting a dx of anything that's life-altering is not easy. Finding ways to deal with it is a project in itself. Each to his own with that one but it needs to work.
I'm grateful for this forum and all the people here. Blessings to us all. Karen
I still find myself at times beyond my stress threshold (usually because of work) and find myself getting frantic. That brings on worsening cog fog, swallowing issues, pain... Well, I think it makes everything worse.
Getting a dx of anything that's life-altering is not easy. Finding ways to deal with it is a project in itself. Each to his own with that one but it needs to work.
I'm grateful for this forum and all the people here. Blessings to us all. Karen
Kyle, you hit the nail on the head with Dr. Google! The internet makes it so easy for us to rule things in or out.
Kelly, I know how hard the financial strain can be. And I know how it feels to become consumed with finding answers. It's no fun and everyone has to find their own way to deal with that. Medically, you must be comfortable with your doc. Sounds like this new one is exploring options. That's a good thing.
Praying you have a good MRI and the results put you further along the dx path. Keep calm and carry on! Lol
Kelly, I know how hard the financial strain can be. And I know how it feels to become consumed with finding answers. It's no fun and everyone has to find their own way to deal with that. Medically, you must be comfortable with your doc. Sounds like this new one is exploring options. That's a good thing.
Praying you have a good MRI and the results put you further along the dx path. Keep calm and carry on! Lol
Hi KB
The road to an MD diagnosis is rarely straight and narrow. Because MS attacks the central nervous system symptoms can appear virtually anywhere.
I went through 20 years of various, seemingly unrelated, symptoms. I spent the bulk of those 20 years chasing individual symptoms, when they got to be too annoying. This wasn't very often and no one was thinking MS.
In August of 2011 that all changed. All of the symptoms appeared at the same time and a bunch of new ones joined the party. Thankfully I was quickly referred to the right neurologist and diagnosed with SPMS.
MS can connect many dots. The key is finding the right neurologist! It sounds like you may have done that. There will be lots of blood tests, MRI's and maybe even an LP. If you have had all these done before, he/she may want their own.
Try to stay calm, and try and stay away from Dr. Google :-)
Kyle
The road to an MD diagnosis is rarely straight and narrow. Because MS attacks the central nervous system symptoms can appear virtually anywhere.
I went through 20 years of various, seemingly unrelated, symptoms. I spent the bulk of those 20 years chasing individual symptoms, when they got to be too annoying. This wasn't very often and no one was thinking MS.
In August of 2011 that all changed. All of the symptoms appeared at the same time and a bunch of new ones joined the party. Thankfully I was quickly referred to the right neurologist and diagnosed with SPMS.
MS can connect many dots. The key is finding the right neurologist! It sounds like you may have done that. There will be lots of blood tests, MRI's and maybe even an LP. If you have had all these done before, he/she may want their own.
Try to stay calm, and try and stay away from Dr. Google :-)
Kyle
COMMUNITY LEADER
Could you please explain what 'you' mean because I would interpret....
"I obviously have some neurological problems and when I posted the first book i wrote i guess i was misleading, i am not having all of those symptoms at once they have come and gone thru the years or a new one has come."
as meaning, your older sx's have completely gone away, never to return and then something new happens for awhile and then that goes away never to return and then something new happens for awhile etc etc
If that's about right, what exactly are your current sx's that the neurologist is thinking could be MS?
Cheers..........JJ
"I obviously have some neurological problems and when I posted the first book i wrote i guess i was misleading, i am not having all of those symptoms at once they have come and gone thru the years or a new one has come."
as meaning, your older sx's have completely gone away, never to return and then something new happens for awhile and then that goes away never to return and then something new happens for awhile etc etc
If that's about right, what exactly are your current sx's that the neurologist is thinking could be MS?
Cheers..........JJ
I have consulted with my gynocologist regarding my female hormone levels as i take HRT's. My levels have always been pretty much right on except for the time a few years ago they gave me too much testosterone, that problem was quickly resolved.
I have read about sleep apnea trying to find my way thru this and I dont think that is me. I obviously have some neurological problems and when I posted the first book i wrote i guess i was misleading, i am not having all of those symptoms at once they have come and gone thru the years or a new one has come.
At this point I am having some obvious neurological problems and my new neuro has suggested MS so i have to rule this one out too, thanks again, Kelly
I have read about sleep apnea trying to find my way thru this and I dont think that is me. I obviously have some neurological problems and when I posted the first book i wrote i guess i was misleading, i am not having all of those symptoms at once they have come and gone thru the years or a new one has come.
At this point I am having some obvious neurological problems and my new neuro has suggested MS so i have to rule this one out too, thanks again, Kelly
Thank you and I understand completely. I am sorry you are having so much difficulty, sounds to me like MS is just a booger. Take care and i appreciate the help. I will let you guys know what i find out, my MRI of brain is today, Kel
I hope you get some relief !
I hope you get some relief !
I have been sick for a long time. I did not have health insurance at the time I got sick so Dr. visits were far and few. I took care of family first and not myself.
The bouts of depression are now what I think was severe fatigue that put me in bed for weeks at a time. This can be very depressing when you cannot take care of your family or yourself. The guilt overcame me. The pain made me anxious.
Yes, I am having some issues. I am normally a kind caring person, I am not a bully I am the girl that got picked on all her life. I am seeing a psych because that is all my insurance would pay for and he is a neurologist as well.
I went to see a psych because of the mental issues i was having from no sleep, pain, and no support from family members. The psych is helping me with my sleep issues and i am trying some new techniques as we speak, it is just not working for me once again. I cannot afford to run to the doctor every other week. It is expensive and I lost my job because of this thing that has a hold on me.
The last two years have been hell and I have went to every kind of specialist I could find. I am on number 2 and 3 of some of these guys and not because of mental health issues but because they did not have my best interest in mind. Each time I get another doctor it seems a bit overwhelming for the both of us especially when you have a history of illness (years) and you have gotten no answers so you just give up and that makes you look bad.
I will admit i have let this thing consume me i just want my old life back. I
am tired of hurting. Looks like with this new possible diagnosis i might be on the right track. Mental health issues are surely not to be ignored as I have seen it ravage my husbands family to the core.
Thanks for accepting my apology and I hope you have a wonderful day. My MRI is today of the brain (i havent had one of the brain for years) maybe we will find something that will lead me in the right direction. thx, kel
The bouts of depression are now what I think was severe fatigue that put me in bed for weeks at a time. This can be very depressing when you cannot take care of your family or yourself. The guilt overcame me. The pain made me anxious.
Yes, I am having some issues. I am normally a kind caring person, I am not a bully I am the girl that got picked on all her life. I am seeing a psych because that is all my insurance would pay for and he is a neurologist as well.
I went to see a psych because of the mental issues i was having from no sleep, pain, and no support from family members. The psych is helping me with my sleep issues and i am trying some new techniques as we speak, it is just not working for me once again. I cannot afford to run to the doctor every other week. It is expensive and I lost my job because of this thing that has a hold on me.
The last two years have been hell and I have went to every kind of specialist I could find. I am on number 2 and 3 of some of these guys and not because of mental health issues but because they did not have my best interest in mind. Each time I get another doctor it seems a bit overwhelming for the both of us especially when you have a history of illness (years) and you have gotten no answers so you just give up and that makes you look bad.
I will admit i have let this thing consume me i just want my old life back. I
am tired of hurting. Looks like with this new possible diagnosis i might be on the right track. Mental health issues are surely not to be ignored as I have seen it ravage my husbands family to the core.
Thanks for accepting my apology and I hope you have a wonderful day. My MRI is today of the brain (i havent had one of the brain for years) maybe we will find something that will lead me in the right direction. thx, kel
It isn't that I don't have the time. I am running so short on physical and mental energy that my promises sometimes take a while to keep. I got my bladder botox'ed yesterday and have had severe spasms and today I got my Tysabri infusion. That's about all I can handle these days. I never have second thoughts about answering.
I'll try tomorrow - which probably seems like a lifetime, but it's what I can do.
And thank you for the shorter paragraphs. Since I have unwanted and uncontrollable eye movements I get lost in large blocks of text and loose my way and don't get some of the info.
Quix
I'll try tomorrow - which probably seems like a lifetime, but it's what I can do.
And thank you for the shorter paragraphs. Since I have unwanted and uncontrollable eye movements I get lost in large blocks of text and loose my way and don't get some of the info.
Quix
COMMUNITY LEADER
Thank you for the apology!
Although I am reluctant to mention this, I really think this maybe an important issue that is not getting as much of your attention, as the other medical issues your dealing with. You acknowledge that you experience mental health issues (bouts of depression, severe anxiety and emotional issues), and I'm assuming your also having out of character mood swings by your comment of "i dont know what has come over me."
AND if you are, day after day dealing with sleep deprivation and continually in pain, it will not only negatively effect you physically but it will also negatively effect you emotionally and cognitively! The longer it continues, the more your perception is negatively effected and the worse everything will seem, simply because your brain and body has not been able to switch off and it needs it to function efficiently.
Many medical conditions are known to create the perfect emotional storm (eg sleep apnea, menopause etc. etc) and i can't stress enough how vitally important it is, to make sure any mental health issues you do have, are equally and fully addressed as soon as possible.
Mental health is not of lesser importance to the physical, sometimes people need additional help to get through difficult times, and I think you are clearly saying, you are having a very difficult time right now. So please speak to your dr about the psychological upheaval your currently experiencing. It is perfectly understandably to have mental health issues, because of all the medical issues you have had to deal with and or directly caused by a medical condition!
Please don't ever give up being proactive with your mental health, even when you find what helps you feel emotionally in control, never lessen the importance of your emotional well-being, because it is never in your best interest.........it only makes life harder and when you have medical issues, you really don't need 'anything' to be harder to cope with than it already is.
If you are not getting enough help with your dx conditions, please find a dr who will help you work out the right medications for you, so your quality of life will improve!
Cheers...........JJ
Although I am reluctant to mention this, I really think this maybe an important issue that is not getting as much of your attention, as the other medical issues your dealing with. You acknowledge that you experience mental health issues (bouts of depression, severe anxiety and emotional issues), and I'm assuming your also having out of character mood swings by your comment of "i dont know what has come over me."
AND if you are, day after day dealing with sleep deprivation and continually in pain, it will not only negatively effect you physically but it will also negatively effect you emotionally and cognitively! The longer it continues, the more your perception is negatively effected and the worse everything will seem, simply because your brain and body has not been able to switch off and it needs it to function efficiently.
Many medical conditions are known to create the perfect emotional storm (eg sleep apnea, menopause etc. etc) and i can't stress enough how vitally important it is, to make sure any mental health issues you do have, are equally and fully addressed as soon as possible.
Mental health is not of lesser importance to the physical, sometimes people need additional help to get through difficult times, and I think you are clearly saying, you are having a very difficult time right now. So please speak to your dr about the psychological upheaval your currently experiencing. It is perfectly understandably to have mental health issues, because of all the medical issues you have had to deal with and or directly caused by a medical condition!
Please don't ever give up being proactive with your mental health, even when you find what helps you feel emotionally in control, never lessen the importance of your emotional well-being, because it is never in your best interest.........it only makes life harder and when you have medical issues, you really don't need 'anything' to be harder to cope with than it already is.
If you are not getting enough help with your dx conditions, please find a dr who will help you work out the right medications for you, so your quality of life will improve!
Cheers...........JJ
ok-i promise this is it but it is important. The rheumy did a ultrasound on my wrist and hands looking at my small joints ? she said i had no fluid and no inflammation there, this is the right hand i have so much pain and numbness in thx and i have all the results of my bloodwork for the last 2 years if u need to ask, last time, june 2013
i bet you are saying why did i answer this girls post and if you dont have time i completely understand. I wanted to add a few things that i have thought of and written down. this is not exact dates
after birth of 2nd child- (21 years ago) i was having some problems. I had breast milk but was not pregnant. My Gyno gave me some meds and i had an mri,, no pituitary tumor and i had another one 2 years later (mri) clear
She also talked to me about CFS and said i had a positive epstein barr-
what i forgot here was that just prior to that my son and i were both hospitalized with a virus that took both of us out - my older son then 3 was not effected. That son that was sick along with me had just had surgery for pyloric stenosis, we almost lost him as he had been being misdiagnosed and was being treated for a milk allergy that he didnt have.
This was scary and I remember him having a chronic cough and was hospitalized once again at Children's Hospital and i cant remember what it was they were looking for i am blank. He is healthy now and never had any further problems until i remember that occasionally he will slur his words and he has a hand that shakes. he has been to the doctor but was never really given any explanation, the doctor contributed it to stress and not eating right. ect. He was a little delayed and had to have speech therapy at 5 but therapist said it was immaturity, he was the youngest in his class. Graduated HS with Honors !
I had a sister that was born 1 year before (1968) that had a blockage and died at Children's she had aspirated on vomit i believe is what they said and developed pneumonia
I was once a very articulate person with a large vocabulary (not medical i guess you can see, but I am learning) now i cant find the word, got it, competent, i cant read to comprehend and i cannot seem to retain any information. i have gradually getting worse over the last 2.5 years. I know the neurotin has made it bad but it was already there. you will read i lost my job last year, my boss recognized i had some "issues" and asked that i get medical help.
Ok-here goes folks, i told you i had posted a forum that had magically disappreared well guess what i posted it on the fibro forum i am on and just realized it, once again sorry i feel like i am decending into madness sometimes-ok, i will leave you alone. thx
after birth of 2nd child- (21 years ago) i was having some problems. I had breast milk but was not pregnant. My Gyno gave me some meds and i had an mri,, no pituitary tumor and i had another one 2 years later (mri) clear
She also talked to me about CFS and said i had a positive epstein barr-
what i forgot here was that just prior to that my son and i were both hospitalized with a virus that took both of us out - my older son then 3 was not effected. That son that was sick along with me had just had surgery for pyloric stenosis, we almost lost him as he had been being misdiagnosed and was being treated for a milk allergy that he didnt have.
This was scary and I remember him having a chronic cough and was hospitalized once again at Children's Hospital and i cant remember what it was they were looking for i am blank. He is healthy now and never had any further problems until i remember that occasionally he will slur his words and he has a hand that shakes. he has been to the doctor but was never really given any explanation, the doctor contributed it to stress and not eating right. ect. He was a little delayed and had to have speech therapy at 5 but therapist said it was immaturity, he was the youngest in his class. Graduated HS with Honors !
I had a sister that was born 1 year before (1968) that had a blockage and died at Children's she had aspirated on vomit i believe is what they said and developed pneumonia
I was once a very articulate person with a large vocabulary (not medical i guess you can see, but I am learning) now i cant find the word, got it, competent, i cant read to comprehend and i cannot seem to retain any information. i have gradually getting worse over the last 2.5 years. I know the neurotin has made it bad but it was already there. you will read i lost my job last year, my boss recognized i had some "issues" and asked that i get medical help.
Ok-here goes folks, i told you i had posted a forum that had magically disappreared well guess what i posted it on the fibro forum i am on and just realized it, once again sorry i feel like i am decending into madness sometimes-ok, i will leave you alone. thx
Thank you so much for your prayers and you and the people here that are trying to help me and all of God's little children here. I am trying and you are right i have tried to and to be honest I cant retain any of the info i do read so i have just quit.
Other than looking at this once in a while and my fibro forum I am not reading anymore until I get further info. I bet i have read what MS is a thousand times and i still cant tell you. I will say this though, thru all of this I had never even thought about MS. The only thing that rang a bell with me when she said it was RIchard Pryor had MS-I was a big fan-he was in a wheelchair, omg!
I know too about the taking 3 hours to write thing that is why i just have to get up now and come back to it. I use to be such a articulate and well here we go i cant find the word i am looking for so i am going to shut up.
When i did read about it tho i realized that some of the things that i had had or was having were symptoms and i had just not looked into it, i just thought it was in my head but now i have confirmation that maybe i wasnt so crazy after all. I have started trying to keep a journal but i forget and so there you go.
I told my husband sometimes i feel like i am decending into madness, Im not even going to tell you i am going to post it soon. I worry about that the most, i can take the pain, i have for years-in a certain way-i dont take off to the er anymore dont have the energy but i will take it over the mental thing anyday- prayers and blessing to you - have a wonderful day !!
Other than looking at this once in a while and my fibro forum I am not reading anymore until I get further info. I bet i have read what MS is a thousand times and i still cant tell you. I will say this though, thru all of this I had never even thought about MS. The only thing that rang a bell with me when she said it was RIchard Pryor had MS-I was a big fan-he was in a wheelchair, omg!
I know too about the taking 3 hours to write thing that is why i just have to get up now and come back to it. I use to be such a articulate and well here we go i cant find the word i am looking for so i am going to shut up.
When i did read about it tho i realized that some of the things that i had had or was having were symptoms and i had just not looked into it, i just thought it was in my head but now i have confirmation that maybe i wasnt so crazy after all. I have started trying to keep a journal but i forget and so there you go.
I told my husband sometimes i feel like i am decending into madness, Im not even going to tell you i am going to post it soon. I worry about that the most, i can take the pain, i have for years-in a certain way-i dont take off to the er anymore dont have the energy but i will take it over the mental thing anyday- prayers and blessing to you - have a wonderful day !!
Hello, Kelly.
We really all have been there in one form or another and we want to help.
My first post was full of dx info with my question buried within it. It took me over 3 hours to write! Lulu (bless her) waded through it and offered good tips. One thing she said that really resonated was "you just needed to it out there." Lulu was right. I didn't have confidence in my NP and was stressed about finances - I needed someone to take me seriously (and the good folk on this board did).
Something I've noticed in my new brain is the less I understand something, or the more helpless I feel, I not only get cog fog very badly but I tend to obsess on what it is I can't understand! This makes everything worse; I don't understand but I keep trying to read research, etc. and get more frustrated because I don't understand....
Looking at posts here, receiving good advice here, I'm learning to just STOP. If we're doing things that make us worse, we need to find a way to stop. I'll play a non- threatening game on iPad that requires very little thinking but it distracts my brain and helps me calm down.
I get the lip and chin tingling. I was also dx with face neuralgia 2 years ago but now have dx of MS which explains those.
I am praying you get good medical care, Kelly. Be patient (as much as you can) and it will all come about.
Blessings, Karen
We really all have been there in one form or another and we want to help.
My first post was full of dx info with my question buried within it. It took me over 3 hours to write! Lulu (bless her) waded through it and offered good tips. One thing she said that really resonated was "you just needed to it out there." Lulu was right. I didn't have confidence in my NP and was stressed about finances - I needed someone to take me seriously (and the good folk on this board did).
Something I've noticed in my new brain is the less I understand something, or the more helpless I feel, I not only get cog fog very badly but I tend to obsess on what it is I can't understand! This makes everything worse; I don't understand but I keep trying to read research, etc. and get more frustrated because I don't understand....
Looking at posts here, receiving good advice here, I'm learning to just STOP. If we're doing things that make us worse, we need to find a way to stop. I'll play a non- threatening game on iPad that requires very little thinking but it distracts my brain and helps me calm down.
I get the lip and chin tingling. I was also dx with face neuralgia 2 years ago but now have dx of MS which explains those.
I am praying you get good medical care, Kelly. Be patient (as much as you can) and it will all come about.
Blessings, Karen
thanks JJ, can you please accept my apology, I am not normally this way, I am a kind and compassionate person and i dont know what has come over me.. I dont know what is happening to me and I am scared. Peace Kel
Hi everyone -
We edited the original post, just added some paragraphs. We understand the difficulties of reading large blocks of text, but please let us know at any time if there is a post that is difficult for some to read. We'd be happy to help. We won't change any wording, just break it up some.
All of the Community Leaders know how to get in touch with the moderators, or you can contact me by sending me a PM at any time.
We hope this helps!
Emily
We edited the original post, just added some paragraphs. We understand the difficulties of reading large blocks of text, but please let us know at any time if there is a post that is difficult for some to read. We'd be happy to help. We won't change any wording, just break it up some.
All of the Community Leaders know how to get in touch with the moderators, or you can contact me by sending me a PM at any time.
We hope this helps!
Emily
COMMUNITY LEADER
"And you know it is too bad people will over look my post because of the way i wrote it -i have visual and cognitive problems as well and i havent had any problem reading a post...."
Please understand that no one was picking on you or being petty, you were respectfully and 'only' asked to brake up your posts because if you do so, more of the MS community will be able to read your words and if the people who do want to help, can actually more easily read and understand your posts, you would not only be empathetic and compassionate of people with MS but make it so more people in the community can help and support YOU.
"I guess the lip fluttering question would be one of those on the unusual symptom list but it turns out it is not so unusual. Talked to a lady last night, she is actually a registered RN and a Moderator on the Fibro forum i am on. She also has MS and a condition called Trigeminal Neuralgia. Turns out she has this problem, how about that.
Have you heard of this condition. I understand it is common in MS."
Yes I have but you posted that question in a few other communities and stated within the text that you didn't have TMJ or problems with your mouth and 'I' knew of no other explanation in regards to MS. I apologise if not responding to a question i couldn't answer, offended you in some way it was not my intent and sure no one elses.
I am absolutely 100% sure no one ever intended to offend you in any way, because imho each and every community member who chooses to spend their time to respond and unselfishly support others in need, (when they have their own medical issues to live through), are behaving and demonstrating their compassion!
Good luck and I hope you find the answer!
peace...........JJ
Please understand that no one was picking on you or being petty, you were respectfully and 'only' asked to brake up your posts because if you do so, more of the MS community will be able to read your words and if the people who do want to help, can actually more easily read and understand your posts, you would not only be empathetic and compassionate of people with MS but make it so more people in the community can help and support YOU.
"I guess the lip fluttering question would be one of those on the unusual symptom list but it turns out it is not so unusual. Talked to a lady last night, she is actually a registered RN and a Moderator on the Fibro forum i am on. She also has MS and a condition called Trigeminal Neuralgia. Turns out she has this problem, how about that.
Have you heard of this condition. I understand it is common in MS."
Yes I have but you posted that question in a few other communities and stated within the text that you didn't have TMJ or problems with your mouth and 'I' knew of no other explanation in regards to MS. I apologise if not responding to a question i couldn't answer, offended you in some way it was not my intent and sure no one elses.
I am absolutely 100% sure no one ever intended to offend you in any way, because imho each and every community member who chooses to spend their time to respond and unselfishly support others in need, (when they have their own medical issues to live through), are behaving and demonstrating their compassion!
Good luck and I hope you find the answer!
peace...........JJ
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