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multiple sclerosis please help need answers
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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 ?
40 Comments Post a Comment
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5887915_tn?1383382380
Hi KB, Welcome & I'm sure someone with more knowledge will try & answer your post soon. I have only just been dx'd a month ago so I'm don't think I am the best person to give advice. But maybe if I ask you a few questions then it might give one of the other forum members more information.

If your Neuro has said he thinks you have MS then he would have asked for some testing. Have you had an MRI? Has he ruled out things like APS & the whole load of mimics of MS? Did you have any abnormalities in your Neuro examination?

I am sort of out of my depth so I won't go on any further. I just wanted to Welcome you but to also mention that there are not any doctors on this forum & we are people living with MS or awaiting a dx but there are doctors in the Neurology forum. I hope you get some answers soon. Sorry I can't help. Karry.
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738075_tn?1330579444
Hi, there, and welcome!

Your post took some time to wade through.  In the future, could you please break up into paragraphs?

Anyway, you have some valid complaints, and it sounds like your neurologist has started the process of diagnosis. Diagnosis can take a long time.  Some of us, here in the forum, have been through 6 neuros, and some are still in Limboland after many years of searching.

In the mean time, please have a look at our Health Pages (links on right side of page) - they're full of all kinds of interesting info.

Keep us posted in your journey.  Lots of knowledgeable people, here.

Again,
Welcome!
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987762_tn?1331031553
Hi and welcome, rarely does a post go unanswered in our MS community, I can only assume it was accidentally overlooked or no one could answer your lip fluttering question and not that you did anything at all wrong!

Unfortunately, you may not get many responses to this post, because a lot of people with MS, have visual and or cognitive issues and large blocks of print are often too difficult to read, breaking it up as i'm doing will really help :o)

I personally don't think anyone is ever really "text book" when it comes to the symptoms of MS, MS has a lot of sx's and many conditions may seem like MS but they are different in both causation and types of sx's, we call them mimics eg Lupus, peripheral neuropathy, diabetes, thyroid, DDD etc.

You have so much going on that, it really seems like too much and it makes me think that there maybe more than one underlying problem. You mention some dx conditions, that could account for a lot of your listed sx's, though if they account for everything, is possibly the main question to be asking your dr's.

Honestly to me, you sound more like Lupus than MS, and i think it would be worth getting Lupus reinvestigated as a possible cause, whilst your getting tested for MS. You don't mention if you have failed any neurological tests, did the neuro find any clinical signs that makes MS possible?

Cheers..........JJ      



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Avatar_m_tn
Thanks for your reply. I know the short story i wrote was a boat load but as i mentioned above i have been sick for many years without any answers and i am a bit flustered. Didn't i read in the links here that anxiety,  depression,  and emotional problems are quite common in MS.

I have been a Legal Secretary for over 20 years so i do have a little smarts. This is all new to me and my whole life has changed. I lost my job recently because i couldnt remember how to do it anymore. I was making too many mistakes and missing too much work due to illness. That divorce, child abuse case or brief to the court of criminal appeals for a client who murdered a child that i had typed up wrong was very upsetting. Peoples lives were in my hands and i screwed up. This has also been hard to swallow.

whats even harder to swallow and you must understand is that the last 15 years or so have been robbed of me, robbed of my children, robbed of my family because i was sick but nobody knew why. After a while, especially when people cant see your pain they start to question you. You start to question yourself.

Just when i thought i was going to give up again and just live with it I found someone last week  who listened to me and the MS thing was a bit of a shock.  You should see that each doctor that i have seen has been treating me for the symptoms and not the real issue. It has been very hard to keep up with.

You can probably understand how it feels when you are sent to yet another specialist that you have to explain yourself too and each time you see one you have one more unexplained symptom and that is why you are there. I am not a doctor and i know you aren't i just thought we could share our experiences.

You see i have gotten to the point where i am so sick i am in the bed for weeks and even over a month at times. My pain at this point is so severe and with 2-3 hours of sleep a day or no sleep at all you get this way. When you cant feel your feet you cant walk and when you cant walk it pisses you off. Just dont seem right when you are 30 something and no one can tell you why you cant feel your feet.

Sorry if i stepped on some toes here but i thought this was the place to come to ask questions and vent to people who are in similar situations that know what i am going thru. You may think i am feeling sorry for myself but i am in mourning right now. I want some kind of life back whatever it may be.

Sorry i didnt break up my paragraphs, how am i doing so far ? Yes i probably read somewhere that this would be easier but that was last week and i cant remember what i did yesterday so...... By the way this comment box could be a little larger it just seems a little uncomfortable to try and type in I feel restricted with these claw for hands i have now. Hurts my eyes too, as my vision is a little blurry-that is a new thing by the way. I will have to contact someone about this i am sure i am not the first to complain.

Looks like i have written a book again, it only took me an hour as i cant find the words i am looking for or i forgot what i wrote so i have to re-read every line. Thank God for google. I will keep you guys posted and once again i apologize for the insanity. I am just like everybody else here i am just looking for answers. Thanks for your reply and i hope you have a good day. Sincerely, Kelly





I do understand diagnosis can take a long time, been a long time for
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1831849_tn?1383231992
Hi KB2

This is a place to come and ask questions and vent. Living with MS, and living through the MS diagnostic process, can be vexing.

We will provide as much help as we can, given that we are not doctors (with one notable exception!) In an effort to try and help you get to the bottom of you maladies, it would be helpful to have the results of tests your neuro has ordered such as MRI.

On what is he/she basing the MS assumption?

Kyle
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Avatar_m_tn
Gosh Karryon looks like i was once again carrying on and totally skipped over your questions. And by the way I am sorry to hear of your diagnosis and wish you the best of luck, i am sure it is shocking and has not yet registered.

Please forgive as my thought process is a little screwy, in answer to your questions that i totally got lost. Yes, of course she ordered  MRI of brain and spinal cord on Thursday and Monday a Nerve Conduction Study.

Since i have lost control of my bowels and bladder function she is going to have me tested for kidney damage on thursday as well. (i was told by docs that i needed to have my bladder tact? and that i had IBS-this took about 2 years to figure out after many tests and SPECIALIST-OOPS SORRy

  I will look into the APS thing I do not know what that is. And as far as my exam, when she tested my knee reflex and i kicked her square in the private parts and my right side she said has marked weakness?

She diagnosed my numb feet as Neurothapy and i had already been taking Neurotin since May to no avail. It worked at first but quit working, they wont change my meds, they will only up my dosage

.You know what is so funny is that i have been on my doctor about my feet as they have gradually gone numb over time, my doctor yelled at me that i was too young to have neurothapy and i was not diabetic so he didnt know.

Oh and yes i have had a brain scan several years ago and a mri of my neck just a few months ago and it showed nothing. I was suppose to have a mri of brain and spinal and they only did my neck, ooops error on docs part, he apologized.

I wish you the best of luck and i hope your treatment plan goes well, kel
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Thanks for your reply, i bet it did take some time to wade thru, if your thought process is like mine that happens. As i stated above i have been sick a long time with no answers just like you guys and i am a bit overwhelmed right now.

Just like i said I never dreamed of MS. This hick town i live in has no good doctors so i have to travel to see a decent one and well that hasnt worked for me either. Now i am to the point i cant sit in the car that long so i will have to settle for something/someone here.

I am so tired i cant type anymore and my hands and arms are killing me and my eyeballs feel like they are going to pop out of my head. As i said i am new here and with my cognitive issues i am finding it a little hard to navigate. I am on a forum for fibro (this years diagnosis) and it is completely different so please forgive. They like you to type in all caps, lol, imagine that.

Have a good one and i hope we all prevail, if thats the word, cant seem to find them they are lost in this mess of a brain i have, oh i am rambling again. Hope you have a wonderful day and i will keep you guys posted i should know something soon. Kelly
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Avatar_m_tn
thx for your reply, as i mentioned in the book i wrote i have been sick a long time and with the problems i presented to the neuro she thinks i could have had this a long time and i am upset because i have searched for answers for so long. I just needed some confirmation that maybe some of you had been thru this too.

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.  It is quite embarrasing to be at the checkout line and your lips start fluttering and twitching and you dont really realize it at first because you cant feel your lips. People must think i am crazy, it makes you afraid to leave the house. You cant talk and have this happen at the same time, it is actually humiliating. Then when u r to embarrased or afraid to share in fear that your loved one will think your crazy but then he tells you you are doing something strange. AGAIN

You know i told you that when i heard the word MS i got on the National MS website, i had symptoms that i had not even realized were symptoms, that i had either dismissed or doctors have now i know, misdiagnosed.

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, i find the most difficult thing to be this small comment box, i am beginning to believe this forum is just not for me, too bad, i guess for now since it could be so many things i should just stop searching b4 i drive myself nuts. Imagine my having some depression, severe anxiety and some emotional issues.

I dont have lupus and that is another book i could write. I am just looking for answers like everybody else and i am new this site and i think i should probably go now because i am not thinking straight again. Yes i am messed up but at least i know it and i am just so tired, a little compassion please and enuf with the fussing over such petty things. I think we all have much more important things to discuss.

Thanks, kelly







You can imagine i was quite distressed when i realized
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1831849_tn?1383231992
Re: Neurontin and Neuropathy

The use of Neurontin to treat neuropathy is an "Off Label" use. As such its dosing is an inexact science. Starter doses of 100mg/day can be ramped up to 3600mg/day over time. Docs will not likely take it off the table until the max dose is reached.

I am currently maxed out at 3600mg/day. All by itself it didn't do much to relieve my neuropathic foot pain. We added Elavil to the equation and I began to get some relief. Now that has stopped working so we are switching in Lyrica for the Neurontin etc etc etc.

Neuropathy is a moving target and finding the right cocktail of meds can take a while.

Kyle
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thank you for your kind response, I was hoping this was the place to vent, i don't think i intentionally meant to start out that way i just got started and couldn't stop.

If you read my post to the girls i explained myself a bit better, tho i shouldn't have too, anyhoo, in answer to your question - a thing that happened to me years ago that really got me - severe fatigue, migraine, neck stiffness, bouts of depression, aching all over and stiffness.I could not figure out where this came from but it got me down.  The best i can remember i was like this for several months and it went away.

trying to break up oaragraphs here---It came back but it was different, maybe not as severe but i distinctly remember my feet hurt so bad i could not walk, they were numb, tingling, itching and throbbing, along with that I had continued off and on to have say the headaches and neck pain. NO answers from doctors, had usual suspect test-nothing-but fibro for an answer?

I did not ask her specifically why she thought this i was in shock i think- but i assume it was this the numbness and loss of the use of my right side at times. i cannot use my right leg for months at a time, this has happened twice with no answers, Feet are in bad shape, cant feel your feet you cant walk. i am stiff and sore and if i do anything, say shopping, i am down for the rest of the day.

Migraine, facial pain with numbness. cognitive difficulties, speech problems, swallowing problems, electric shock sensation, tremors, insomnia, for years i had to go get my bladder cathed to remove urine, now i cant control it at times.  last year it was my bowels i could not hold. recent blurry vision and black dot ? my seeing colors is messed up -say an object is bright yellow as i know it to be sometimes when i look at things they are just white-idk about that one. She said something like good your pupils are the same size.  PAIN PAIN PAIN -my body feels like it is a knot-i think she said my reflexes were extreme and in some areas she tapped i had none ?

cognitive is real bad i go totally blank  i lost my job i had forever cause i couldnt process it anymore - memory is real bad and that is what worries me the most. tell me what yhou think   facial pain, neck pain, stiff and sore are really my painful concerns, bladder worries me, bowels are ok for now, i have the numbness and tingling, buring and itching for so long i forget aobut it, im tired and babbling now, i go for months and cannot get out of bed so weak and fatigue, like the first thing that happened to me, now that i look back a weakness that i only know that is so severe it is very distinct than just your normal tiredness. ya, that really stands out to me.
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1831849_tn?1383231992
If you are not getting the answers you want from your current doc, perhaps it's time to find a new one. Many of us have moved on from our initial neuro/MS specialist.

One thing is certain, if you don;t ask, they are unlikely to answers. As much as we want them to be, our docs are not mind readers. I refer to the following from you most recent post.

"I did not ask her specifically why she thought this i was in shock i think- but i assume it was this the numbness and loss of the use of my right side at times. "  

ASK!

And as long as I'm quoting your most recent post, I have a suggestion wbout the following.

"If you read my post to the girls i explained myself a bit better, tho i shouldn't have too, anyhoo,"

We, like your doctors, are not omniscient. Many of us have cog fog issues which make following long posts, whether broken into paragraphs or not, difficult. Things that make perfect sense to you may read like Greek to others. So it is likely that you may be asked to clarify things.

We are here to help and support others who have been diagnosed, are are going through the diagnostic process. We are not doctors, but a collection of people who have been where you are. We would love to opportunity to provide "advice and counsel".  :-)

Kyle

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6034128_tn?1381874614
Hello, Kelly. Looks like you got a lot of good answers but maybe you were hoping for more? It is hard at this stage when you feel so ill and all you get is "we have to test." But please go forward with all the tests - it will help rule out things in order to narrow down the search.

Supermum's tips for writing posts was a good reminder to me! For  many of us MSers (including me), reading a post IS difficult (I'm glad you don't have problems with that), and whatever we can do to help each other...

Kyle made a great point - if you have a question for the doctor: ASK. And then ask again if you have to. And if you think of it when you get home, call the dr. office and leave a message with your question. If you have MS, your doc will get used to this and now is a good time to start that training. :-)

Regardless of what your dx is - you're not alone. If it's not MS, but something else, there will be a forum for it. There are wonderful people  on this site.

Here's hoping you get answers soon.
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147426_tn?1317269232
Hi, I am going to try and get a good answer to you soon.  You have a lot of things going on - that mostly don't sound like MS, but clearly is something substantial.  

The positive ANA and the high CRP point away from MS and toward something that causes severe inflammation like Lupus, Connective Tissue Disease, and such.

When you talk about pain you say you have pain in your face -  Is it all over your face at once?  Did you start getting pain in both arms and both legs pretty much at the same time?

Have you been checked thoroughly for Lyme Disease? - even if you don't remember a tick bite.  Has your doctor run a Western Blot looking for evidence of an old Lyme infection?

Then, there are some things that sound very much like MS, weakness that is assymetric, sleep problems, pain, severe problems with urination both with being unable to empty your bladder and then not being able to hold it.  You have plenty of company here on that front.  Even though it isn't just in MS, it can be very embarrassing to have wet yourself in most every store and restaurant in your town (I'm speaking about myself).

I'm glad you are having an MRI of your brain and spine.  IT is IMPORTANT that those MRIs be done following something called "The MS Protocol".!!!  This ensures that the images they get are the most likely to pick up any small lesions.

Many of us feel brain addled most of the time.  If the medical visits are scary and fast-moving and don't seem to make sense, it is good to take a family member or a good friend along who will make sure you are hearing things and who can slow things down so that you can ask questions.

We have a member who is from AL (I think).  I'll see if she is around.

Take care.  I'm going to read your posts really carefully and see if I can make some medical sense out of them.  But, please answer my questions about how the pain and tinglings and such have happened - all over or one place at a time or a combination.

One of the requirements to diagnose MS is that every other more likely problem has to be ruled out first.  The list is long and includes RA, Lupus, other autoimmune diseases, Anti-Phospholipid Syndrome APS (this often shows up with multiple miscarriages in the younger years), HIV syphilis, Lyme Disease, some heart defects like patent foramen ovale, anti-neoplastic syndromes,  and a bunch of others that just slipped  away from me.

Stay with us.  We're good support even if we can't help you with the diagnosis.  I am an MD with MS and I will give it my best, but I can't pretend that I'm as good as a good neurologist. (I was a pediatrician)

Quix, MD
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ok, quix, sounds good to me and i appreciate your response, i didn't know you were a doc and that is even better I will take what I can get. Kids, Dogs, frogs, we are really all the same.

I would first like to say that evidentally the very first post that i made to this forum is gone. I know I wrote it because i remember looking several times to see if anyone had answered. I am sure it made a bit more sense instead of the sleepless/painful state of rambling i was in. I will try not to do that again guys. I know realize that you get a notification by email. I dont know where it is there is no telling, i am still trying to learn this forum

Please note that i have had MRI's and x-rays in the past 6 years that have revealed bulging disc and therefore my doctors have used this information as a means i think to explain away my pain. I also had a hysterectomy 7 years ago that seems to have awakened this beast and that has been to blame too. He did not do one of my brain, i do not know why, i should have pursued it but i had a lot going on in my life, kids, family, work you know the drill.

You go to the doctor with back, leg and foot pain and they want to blame it on your history of disc trouble. You throw in tingle, numb, fatigue, headache, profuse sweating, ect ect. they want to say hold on one thing at a time and by the way its your hormones, they do in Alabama anyway.

ok-i am going to try and answer your questions in the order that you asked them so i dont ramble again. But yes I have been tested for Lyme last year and was told no and I had one blood test out of probably 2 a year for the last 6 years to come back with high crp and positive ana and finally got in to see a Rheumy Nov 2012. Thus far those test have once again been negative. I have had them every 6 months to re-test my blood.

About 10 years ago or so i had something really weird happen - my years may be off-i know, my brain is gone, a lot when on during those years. I got sick, a fatigue that i only know too well right now that i know is not like your normal fatigue. I had some depression and i did not know what was wrong with me.

A headache from hell along with stiff neck that i have continued to have off and on for years, migraine.  i distinctly remember having some major issues with my feet during this time too, they were killing me, numb (both feet) tingling, burning, itching throbbing. I never really got any answers to be honest but soon thereafter i started having severe back pain and found out i had 2 bulging disc-dont have a clue how i got them.

my facial pain is something new or fairly new along with vision. My facial pain is along my jawline, mostly right side but i will occasionally have a left side pain. The front of my neck hurts as well, like down both side to the front (on either side of my windpipe) it is a sharp stabbing pain that last a few seconds but makes you grab yourself. again, Jaw pain (under neckline) along that bone that radiates sometimes then the pain goes it can be a persisent/off and on thing.

My lips go numb very often for a minute or so or may be numb to different degress thru out the day. I have a lot of eye ball pain everyday and i thought sinus pain and pressure but it is under my eyes on either side of my nose kinda and behind eyeballs.  The top of my head/scalp tends to crawl sometimes with numbness/tingling. I have stabbing pains in head that last a few seconds and are gone but it will make you flench. And stabbing pain in side of head-around top of ear, most all if on my right side.

the best way i can describe to you is this. My pain and i think the onset of whatever i have whether it be ms or not was about 10 years ago, it went away say after 4 to 6 months, it came and left. . I would have to say it might have been gone for a year, maybe even close to 2 then came back lets say 2 times a year, real bad, a flare of some sort is what i have called it. maybe once a year, i cant remember.

Now to today and especially last october i got really sick again, this was a bad one, they all were but the bad ones stand out just like the very first one. This is when i had the blood test and went to Rheumy.

Pain, weakness, numbness and tingling in the right side.Not left side.  Electric shock down back but have felt in arms and leg (left too ?)  Has been this way pretty much from the start of this whole thing. My speech has been affected and this is fairly new and when i say fairly new i mean this year or later part of last year wherein i have not stop trying to find answers. I seem to not be able to finish a sentence without a interruption and a restart-i cant explain it. everybody has noticed it. I am having swallowing problems, had ultra sound on thyroid, no answers.

oh gosh, tremor, that is this year, cant feel it, upper torso only and now you can slightly see my right hand shake. Memory real bad, i am really worried and the neurotin has made it 10x worse. my pain like i said above seems to migrate mainly around my right side. But, both of my shoulders may hurt and burn at the joint. My body feels tight and tense and i cant relax it. My right arm goes numb to my hand-have the funny bone sting sometimes, my right hand is numb a lot- severe low back pain, hips (both) right leg and right foot i cannot feel a lot but if i have been on my feet for more than say 2 hours they both start to hurt, or by the end of the day

i have to stop and rest my feet. i wake up a lot stiff and sore-i dont have ra, sjogrens, lupus, i have been tested over and over since 10-12 and my rheumy seems to think it is neurolgical in nature, therefore she gave me fibromyalgia diagnosis  







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Avatar_m_tn
Thanks Kyle, I will take your advice, Kel
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Avatar_m_tn
Thank you i guess i need to be more aggressive with my doc's, i have changed my problem is i go in there and i go blank. I take notes or my husband but i still seem to get off track.

I do have the vision problems, i do and i am sorry to everybody-i am usually not as aggressive as i was today i am really not like that at all and i do apologize - i hope you all see this -no more excuses whether i've not slept or im in pain, if i get like that again i wont get on - apology to all i would freind you but you prob dont want to be my friend just yet, i didnt start out too good on this one.   sincerely apologetic, kelly
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Avatar_m_tn
i am exhausted and in a lot of pain, your thoughts would be greatly appreciated when you get a chance. I am thinking more clearly now, finally got a couple hours sleep, that will make you crazy in itself !   You will see in my post some inconsistencies but i think what i wrote you is right on as far as an explanation of my pain, timeline and occurences.

A few other things i thought is pertinent. During this time i had the 2 bulging disc and was running back and forth to the ER I had sciatica once and pinched nerve or so said the ER doc. He gave me pain meds and sent me on my merry little way- I did see a neuro who basically said nothing and did some test but i did not follow up because of insurance. Also saw urologist for bladder who did ultra sound said no answers that it was neurological.

The foot thing has come and gone that is what is weird to me. Now really none of this stuff leaves, just seems like something is added on or it is more intense than before or the same. Profuse sweating is really driving me insane, face itching like mad- i have fallen and i walk around like Fred Sanford and I aint kidding. My right leg feels like it weighs a ton and i am messing up my left side now using it.

There have been two occasions this year i have not been able to use my right leg, first of all when things are numb you cant use them but the pain and the pressure of using it killed me, if it happens again i will have to find a crutch. Had xray of leg at hospital the 2nd time around, no answers, that was about 2 months ago. I do have a lot of knee pain now, both knees but i am very fragile at this point and my feet dont work so my legs dont work

HIstory-44 mother of two-21 and 23-natural birth
Had anemia first pregnancy, was given blood transfusion, was never given an answer as to why - smoker for 20 years, quit cold turkey 2 years ago
yes, i have seen a psych for the anxiety and depression that comes with this, my psych happens to have a degree in neurology and zoology, smart guy and he is the one that has helped me in this endeavor. He doesnt  think i have fibro and he doesnt think it is in my head. no drugs, i have wine with dinner once in a while, that is about it.

my blood sugar is fine, no diabetes. Female hormone levels are fine, i think i have covered everything with doctors and i am now back to my pain and exhaustion.

Childhood-was sickly - unattentive mother so i was in and out of hospital with malnourishment on several occasions, growing pains that i will never forget and i was delayed in walking because i was told my babysitter never put me down, lol, i had braces from my hips to my special shoes.
No HIV- no hepatitis, no any of the stuff you said and when i say i dont have this or that i mean to you that i have been tested and have gotten a negative, maybe even more than one time.

I guess you can see why i wonder if there has been something missed here all along, i am partly to blame and now it is so compiled and it is not going away. I dont feel like i am having a seperation in my flares anymore i havent had a break really since last october. The pain and symptoms just get more intense or i develop another..

i have this really weird embarrasing thing with my lips, you know how a baby flutters his lips with spit or food, that is the best way i can describe it, i catch myself doing it and cant stop-so weird, embarrasing, i have just about got to the point i dont leave the house unless i have a plan in place because of all this stuff, my poor husband is doing everything and i am worhtless. thx, kelly



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987762_tn?1331031553
"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



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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
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Avatar_m_tn
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
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6034128_tn?1381874614
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
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Avatar_m_tn
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 !!

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Avatar_m_tn
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

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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
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987762_tn?1331031553
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      

      
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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
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Avatar_m_tn
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

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Avatar_m_tn
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 !
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Avatar_m_tn
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
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987762_tn?1331031553
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    
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1831849_tn?1383231992
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
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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
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6034128_tn?1381874614
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
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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.
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Best wishes for a great MRI,

Blessings, karen
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Avatar_m_tn
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
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1831849_tn?1383231992
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
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6034128_tn?1381874614
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.
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Avatar_f_tn
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
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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!
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