Aa
Unofficial poll regarding your diagnosis and sx
I am fairly new to the forum and am in round 2 of trying to figure out what is wrong as my neurologist said all my symptoms were not due to a neurological problem. After reading many posts, I thought I would take an unofficial poll.
1. How may of you are still un-dx?
2. For everyone--How long have you been having sx and seeking answers?
3. For everyone--How many drs. have you been to before getting a dx?
4. For everyone- what are your symptoms? Are they increasing?
I am just seeing some patterns and it would be nice to see this all on one post if you guys are all willing :D
1. How may of you are still un-dx?
2. For everyone--How long have you been having sx and seeking answers?
3. For everyone--How many drs. have you been to before getting a dx?
4. For everyone- what are your symptoms? Are they increasing?
I am just seeing some patterns and it would be nice to see this all on one post if you guys are all willing :D
37yr old F Not diagnosed
12 years if intermittent symptoms, constant but learnt to live with the last two years. 3rd big episode 1/9/11 constant symptoms now much more pronounced!!
Appt with 3rd consultant on the 17/10/11
Bells palsy 12 yrs ago
Altered vision, Loss sensation power left arm, intense tngling and loss tone to face and Tongue lasting approx 30 min.. Dx Migrane 10yrs ago
Altered vision, couldn't see numbers to pay at till and loss power to right arm lasting approx 1hour. Admitted to hosp MRI NAD 3 yes ago
Continued to have intermittent;
Hot sensations to feet
Tingling face hands and feet
Vibrations in legs
Fatigue
Bladder weakness
Drop things
Slow thinking and getting things out
GERD
Lack of sleep/alcohol = excessive bowel motions for 6-12hrs
Last episode 1/9/11 decimate partial blueness could only see directly infront edged with a watery line then nothing! Lasted 30 min
Followed by intense tingling in left arm, numbness and a sensation my arm was heavy and swollen also tingling in my top lip that I distinctly felt spread up and across my left side of
face Again spontaneously subsided within 30 min.
Subsequently most intermittent symptoms now daily and much more pronounced with very string fasiculatiins randomly through from above my ear, neck, chest, diaphragm, buttock, arms and legs. Vibrations in legs almost constant.
Awaiting 3rd neuro
Forgot to say had a second MRI 6 months after 1st still NAD brain only both times with no contrast
Scared and frustrated don't want to be dx with an overactive brain and stress again!!!
12 years if intermittent symptoms, constant but learnt to live with the last two years. 3rd big episode 1/9/11 constant symptoms now much more pronounced!!
Appt with 3rd consultant on the 17/10/11
Bells palsy 12 yrs ago
Altered vision, Loss sensation power left arm, intense tngling and loss tone to face and Tongue lasting approx 30 min.. Dx Migrane 10yrs ago
Altered vision, couldn't see numbers to pay at till and loss power to right arm lasting approx 1hour. Admitted to hosp MRI NAD 3 yes ago
Continued to have intermittent;
Hot sensations to feet
Tingling face hands and feet
Vibrations in legs
Fatigue
Bladder weakness
Drop things
Slow thinking and getting things out
GERD
Lack of sleep/alcohol = excessive bowel motions for 6-12hrs
Last episode 1/9/11 decimate partial blueness could only see directly infront edged with a watery line then nothing! Lasted 30 min
Followed by intense tingling in left arm, numbness and a sensation my arm was heavy and swollen also tingling in my top lip that I distinctly felt spread up and across my left side of
face Again spontaneously subsided within 30 min.
Subsequently most intermittent symptoms now daily and much more pronounced with very string fasiculatiins randomly through from above my ear, neck, chest, diaphragm, buttock, arms and legs. Vibrations in legs almost constant.
Awaiting 3rd neuro
Forgot to say had a second MRI 6 months after 1st still NAD brain only both times with no contrast
Scared and frustrated don't want to be dx with an overactive brain and stress again!!!
Hi there. I had my first symptoms on June 13, 2011. I was diagnosed with CIS (Clinically Isolated Syndrome) highly suggestive of MS on July 5, 2011. I started Copaxone on July 24, 2011. Happened pretty fast and out of the blue for me. I have my second MRI and my first evoked potentials test later this month - fingers crossed!
My presenting symptom was numbness and hypersensivity in my right hand and arm down to the right knee. Came back up pretty quickly - I ended up with the pins and needles feeling in only my right hand and arm up to the elbow. I still have that right now, even though everything else has gone away. I also had some very, very mild pain behind my right eye 7 weeks into my onset. I now have a few mild cobweb-like floaters in my vision. That's really it thus far! :)
My presenting symptom was numbness and hypersensivity in my right hand and arm down to the right knee. Came back up pretty quickly - I ended up with the pins and needles feeling in only my right hand and arm up to the elbow. I still have that right now, even though everything else has gone away. I also had some very, very mild pain behind my right eye 7 weeks into my onset. I now have a few mild cobweb-like floaters in my vision. That's really it thus far! :)
Julie- So happy all your symptoms are in remission. I am curious- was your dx based on MRI or LP results?
Dx August 2010 w RRMS. First sx appeared about 18-19 yrs ago. Probably seen four dr's. Finally got neurologist who dx me within a week of my first appt with him.
My sx were primarily numbness, tingling, lhermittes, ms hug, internal vibrating, slight right arm weakness. All my sx are currently gone. On copaxone since Sept 2010.
Julie
My sx were primarily numbness, tingling, lhermittes, ms hug, internal vibrating, slight right arm weakness. All my sx are currently gone. On copaxone since Sept 2010.
Julie
Iambus- I think everyone on this forum has been diagnosed with depression/anxiety. Is there some kind of kickback drs. are getting if they give out depression meds? Just a thought... You hang in there and keep looking for answers to our symptoms!
Sumana- It is kind of interesting that back problems are not an MS thing yet it seems many here have issues with back pain. I wonder if there is a loose connection after all? I SO agree with your advice to listen to your body. After all we are the ones who live there right?
JJ- That is such good stuff. It helps when I am feeling cranky to read a positive post like yours. It helps me not be so down on stuff. I am usually pretty positive but I can get frustrated by this journey. Thank you!!!
Sumana- It is kind of interesting that back problems are not an MS thing yet it seems many here have issues with back pain. I wonder if there is a loose connection after all? I SO agree with your advice to listen to your body. After all we are the ones who live there right?
JJ- That is such good stuff. It helps when I am feeling cranky to read a positive post like yours. It helps me not be so down on stuff. I am usually pretty positive but I can get frustrated by this journey. Thank you!!!
Thank you for your response. The last 2 drs explained it as it being depression, even after telling them that I don't feel sad at all (other than when I'm in extreme pain and physical problems with no where to turn to or relief from the pain :/). It's sad that so many of us have problems getting answers. I don't know if I have MS or not but the fact that the drs aren't even looking into other options and just think, "oh your brain MRI was clear so it must be depression" as if the only two illnesses in the world that cause these symptoms are MS and Depression :/ If me, along with others that have had the same problem, tell the drs that we're not depressed then why do they keep assuming that it is depression causing all our symptoms. (ops, sorry for the long rant lol). I have an apt with an MS specialist in a few weeks so hopefully she will know whether I have MS or not and if I don't hopefully she may have some insight on what else could be causing my issues.
With the UTI, I don't know, I've had chronic UTI's and just assumed my body was stupid lol or that maybe I wasn't drinking enough water or something but I read somewhere (of course can't remember where!) that chronic UTI's can be a part of MS. Maybe someone on this forum knows something about that? If you've been getting UTI's and happened to have other symptoms at the same time, it may be a good idea to keep track of that and mention it to the dr the next time you see one, in case it does have relevance to what you've been experiencing :) UTI's are a pain in the butt...or other areas :P
With the UTI, I don't know, I've had chronic UTI's and just assumed my body was stupid lol or that maybe I wasn't drinking enough water or something but I read somewhere (of course can't remember where!) that chronic UTI's can be a part of MS. Maybe someone on this forum knows something about that? If you've been getting UTI's and happened to have other symptoms at the same time, it may be a good idea to keep track of that and mention it to the dr the next time you see one, in case it does have relevance to what you've been experiencing :) UTI's are a pain in the butt...or other areas :P
I worried too about my diaphram fearing a life on a ventilator. There is hope with new techniques. My neuro had a long talk with me about it. Here is one page that shows a bit about it.
http://www.plasticsurgery101.net/plastic-surgery-trends/breathing-surgery.html
http://www.plasticsurgery101.net/plastic-surgery-trends/breathing-surgery.html
I think it was due to my assumptions. I assumed after the birth of my last baby the fatigue was due to having a houseful of kids. I remember crying because I thought I would crack. I never told the doctor because he was so strict with me and I knew I would be put me in the hospital.
Then the backache began. I had trouble carrying a ten pound baby. I would ask friends if their backs hurt when holding their babies. The answer was always no. My mother suffered from terrible back pain (I do believe she had MS). So, I chalked it up to family history.
The last child was in school when I began my career of building displays. The backache became worse. I began to lose my footing on ladders. I visited doctors and chiropractors blaming those issues as work related.
So over the last eleven years, I spent ten searching. Back pain isn't a sign of MS so none caught it. Today after knowing about MS, I can go back and finds things that should have taken me to a doctor but always just blew it off.. I guess I was too busy raising kids, working, cleaning, and oh gezzzzzzzz the laundry (five loads per day for years) to think about it...lol
My doctor gave me the type of MS this past visit. It is PRMS. I had thought it would be PPMS. I feel blessed because there are still treatments for me.
I do know, I watch my kids and their spouses like a mother bird. If they complain of anything I push for medical care. Too much time lost. Don't push it off as nothing. Hell, even the doctors did for years!!!! Even as I stood saying, "This ain't a little bit of anything". They just patted me on the head. Excuses like I was getting older and the work I was doing was for the young...or depression or anxiety....or doing too much.
Pfff....don't listen. Listen to your body!!
Then the backache began. I had trouble carrying a ten pound baby. I would ask friends if their backs hurt when holding their babies. The answer was always no. My mother suffered from terrible back pain (I do believe she had MS). So, I chalked it up to family history.
The last child was in school when I began my career of building displays. The backache became worse. I began to lose my footing on ladders. I visited doctors and chiropractors blaming those issues as work related.
So over the last eleven years, I spent ten searching. Back pain isn't a sign of MS so none caught it. Today after knowing about MS, I can go back and finds things that should have taken me to a doctor but always just blew it off.. I guess I was too busy raising kids, working, cleaning, and oh gezzzzzzzz the laundry (five loads per day for years) to think about it...lol
My doctor gave me the type of MS this past visit. It is PRMS. I had thought it would be PPMS. I feel blessed because there are still treatments for me.
I do know, I watch my kids and their spouses like a mother bird. If they complain of anything I push for medical care. Too much time lost. Don't push it off as nothing. Hell, even the doctors did for years!!!! Even as I stood saying, "This ain't a little bit of anything". They just patted me on the head. Excuses like I was getting older and the work I was doing was for the young...or depression or anxiety....or doing too much.
Pfff....don't listen. Listen to your body!!
COMMUNITY LEADER
I dont actually feel frustrated by whats already happened, i have a way of accepting things that are out of my control rather easily, some would say too easily. lol
I look at it this way, any dr who doesnt know me in any way shape or form, who instantly thinks mental health after reading my mother has bipolar and my kids have Asperger's, is actually making assumptions based on my families history of disabilities and he/she is not seeing me at all. He/she is also making assumptions that my family is more than I can handle lol so not true but even if i lined up a 100 people who do know me and my family, who would all say that i am always level headed and calm no matter what the circumstance and my family function better than most, dispite their disabilities.
It wouldn't make one scrap of difference, the assumption is in their mind, they may even assume that disabilities are negative dynamics in a family (which i will always have issues with) so if he/she does think all my clinical evidence adds up to stress/depression/anxiety dispite all the evidence to support that its 100% wrong. It doesn't really matter in the grand scheme of things, i know he/she will not see me until the incorrect assumptions get out of their mind, which is a waste of my time and energy because it still may never happen.
I personally would not ever trust their word, not my kind of person and certainly not my kind of dr. I dont see it as being my problem if he/she can't see me, i actually think its better for me to not stew by letting someone elses incompetance stick in my thoughts, so i dont. What is done is done, I can't change my history or make it fit someone elses expectations, all I can do is make the choice to let it go and move on!
Cheers......JJ
I look at it this way, any dr who doesnt know me in any way shape or form, who instantly thinks mental health after reading my mother has bipolar and my kids have Asperger's, is actually making assumptions based on my families history of disabilities and he/she is not seeing me at all. He/she is also making assumptions that my family is more than I can handle lol so not true but even if i lined up a 100 people who do know me and my family, who would all say that i am always level headed and calm no matter what the circumstance and my family function better than most, dispite their disabilities.
It wouldn't make one scrap of difference, the assumption is in their mind, they may even assume that disabilities are negative dynamics in a family (which i will always have issues with) so if he/she does think all my clinical evidence adds up to stress/depression/anxiety dispite all the evidence to support that its 100% wrong. It doesn't really matter in the grand scheme of things, i know he/she will not see me until the incorrect assumptions get out of their mind, which is a waste of my time and energy because it still may never happen.
I personally would not ever trust their word, not my kind of person and certainly not my kind of dr. I dont see it as being my problem if he/she can't see me, i actually think its better for me to not stew by letting someone elses incompetance stick in my thoughts, so i dont. What is done is done, I can't change my history or make it fit someone elses expectations, all I can do is make the choice to let it go and move on!
Cheers......JJ
Alex- wow 44 years! That is a long time. It is good that you try to keep a positive attitude. I think that is pretty amazing to embrace life the way you do. Thank you for sharing your journey.
JJ- I read your post and think, "is there a possibility we had the same doctors?" Jiminy Christmas...how can a neuro be so incredibly arrogant? You were tested for mental problems...none were found...and still they want to blame it on that? Seriously??? I feel your frustration. I am hoping you get a dr. who is willing to help soon!!
JJ- I read your post and think, "is there a possibility we had the same doctors?" Jiminy Christmas...how can a neuro be so incredibly arrogant? You were tested for mental problems...none were found...and still they want to blame it on that? Seriously??? I feel your frustration. I am hoping you get a dr. who is willing to help soon!!
COMMUNITY LEADER
1. How may of you are still un-dx?
A. I am officially still undiagnosed by a neurologist, GP dx probable MS from history, clinical sx and MRI findings, therefore i have yet another 'probably' dx. lol
2. How long have you been having sx and seeking answers?
A. I can go back to my 20's for when the unexplained first started, though it is pure speculation of if they were connected to MS, a bit coincidental in my book. We have wondered if the event that happened a few weeks after my son was born (1997) intense pain that dropped me, rib cage locked up, numerous tests and no medical explanation found, wondered if it could of been the begining of the HUG. It wasn't until 08 that I was dx with idiopathic (meaning unknown) intercostal muscle spasms in half my rib cage.
So much has accumulated in between but never a medical explanation, I didnt look for a reason for why these things kept happening then going away, until I started walking like a string puppet and my verbal communication was affected back in 09. Prior to then i was ok with no explanation, after 09 a lot of my prior remitting sx's stayed and i simply couldn't hide it from anyone, let alone my self anymore.
3. How many drs. have you been to before getting a dx?
A. Approx 15 yrs with the one GP, failed neuro exam got me a referal to a general neuro who ordered MRI's after clinical sx of neurological causation, that was in 09. 2 raidologists running the MRI talked to me about 'my' MS, twit neuro said I had a perfect brain with no lesions concluded at 45 i 'probably' had senile dementia (wt?) to explain the cognitive changes and 'probably' had psychological issues to explain those peski inconvenient physical and clinical sx away. Funny but the MRI report found a 'chronic' number of white matter and deep white matter lesions, so no lesions was a lie!
Neuro-psych testing showed upto 3 standard deviation loss of cognitive function, though because of existing high IQ i hadn't gone below normal and normal isn't classed as cognitively impaired lol thats despite the facts that for me it was.
Psych testing showed no psychological issues now or in my history so my mental health was not causing the problem.
New GP in 2010, (he's known me for years but not as a patient) dx 'probable' MS based on history, clinical sx and MRI findings.
Neuro 2 in 2010, clinical sx more pronounced from the year before, not just out of balance but hitting the floor when I close my eyes or stop suddenly, left leg reactive muscle spasms that felt like I was being repeatedly tazered when clonus activated, over reactive reflex jerk in left etc etc. He didn't know sight was connected to MS so wouldn't listen to any sx associated eg diplopia & naystigmas (sp). He said i reminded him of a patient he saw over 20 years ago, he focused his questions on mental health dispite having clinical evidence this was neurological and not psychological.
He concluded the 'chronic' T2 lesions in my white matter and deep white matter were silent and I didn't have a neurological condition. Not going to go into all the stupid things he said in response to my questions regarding that conclusion but to give you an idea "IQ is subjective" to explain away my 30-45 loss of IQ, "psychologists dont always see psychological conditions" to explain away my lack of a dx psychological condition after extensive testings. He was twit no 2 and were i've stopped at this point in time.
4. what are your symptoms? Are they increasing?
A. Cognitive, sight and physical and unfortunately it has increased over the years and most is continuing to do so.
Cognitive: word retreval, noun losses, executive dysfunction, attentional issues, functional dyslexic sx, difficulty learning new material, difficulty retrieving prior learned material.
Sight: diplopia, naystigmas (sp) rappid horizontal jerk in the right eye, slight lightening of the right optic nerve no visible lesion on MRI though. Loosing close and far vision.
Physical: Mainly muscle related, cramps, spasms affect speach to walking. Fatigue, heat sensitivity, tremor from hand to head. Repetition = loss of strength, pain or spasms, Sensory issues, tingles in same places which is now day in day out. Hot or wet sensation same spots but remitts. Vibration in left inner calf on off but mainly on. weird spots of goose bumps sometimes with the visual sometimes just the sensation. Internal temperature gage isn't working along with other autonomatic functions. Balance is gone etc I've probably forgotten a few things lol
Its all good, though when in a relapse it gets to be too much but i'll keep on laughing at the unexplained. lol
Cheers.......JJ
A. I am officially still undiagnosed by a neurologist, GP dx probable MS from history, clinical sx and MRI findings, therefore i have yet another 'probably' dx. lol
2. How long have you been having sx and seeking answers?
A. I can go back to my 20's for when the unexplained first started, though it is pure speculation of if they were connected to MS, a bit coincidental in my book. We have wondered if the event that happened a few weeks after my son was born (1997) intense pain that dropped me, rib cage locked up, numerous tests and no medical explanation found, wondered if it could of been the begining of the HUG. It wasn't until 08 that I was dx with idiopathic (meaning unknown) intercostal muscle spasms in half my rib cage.
So much has accumulated in between but never a medical explanation, I didnt look for a reason for why these things kept happening then going away, until I started walking like a string puppet and my verbal communication was affected back in 09. Prior to then i was ok with no explanation, after 09 a lot of my prior remitting sx's stayed and i simply couldn't hide it from anyone, let alone my self anymore.
3. How many drs. have you been to before getting a dx?
A. Approx 15 yrs with the one GP, failed neuro exam got me a referal to a general neuro who ordered MRI's after clinical sx of neurological causation, that was in 09. 2 raidologists running the MRI talked to me about 'my' MS, twit neuro said I had a perfect brain with no lesions concluded at 45 i 'probably' had senile dementia (wt?) to explain the cognitive changes and 'probably' had psychological issues to explain those peski inconvenient physical and clinical sx away. Funny but the MRI report found a 'chronic' number of white matter and deep white matter lesions, so no lesions was a lie!
Neuro-psych testing showed upto 3 standard deviation loss of cognitive function, though because of existing high IQ i hadn't gone below normal and normal isn't classed as cognitively impaired lol thats despite the facts that for me it was.
Psych testing showed no psychological issues now or in my history so my mental health was not causing the problem.
New GP in 2010, (he's known me for years but not as a patient) dx 'probable' MS based on history, clinical sx and MRI findings.
Neuro 2 in 2010, clinical sx more pronounced from the year before, not just out of balance but hitting the floor when I close my eyes or stop suddenly, left leg reactive muscle spasms that felt like I was being repeatedly tazered when clonus activated, over reactive reflex jerk in left etc etc. He didn't know sight was connected to MS so wouldn't listen to any sx associated eg diplopia & naystigmas (sp). He said i reminded him of a patient he saw over 20 years ago, he focused his questions on mental health dispite having clinical evidence this was neurological and not psychological.
He concluded the 'chronic' T2 lesions in my white matter and deep white matter were silent and I didn't have a neurological condition. Not going to go into all the stupid things he said in response to my questions regarding that conclusion but to give you an idea "IQ is subjective" to explain away my 30-45 loss of IQ, "psychologists dont always see psychological conditions" to explain away my lack of a dx psychological condition after extensive testings. He was twit no 2 and were i've stopped at this point in time.
4. what are your symptoms? Are they increasing?
A. Cognitive, sight and physical and unfortunately it has increased over the years and most is continuing to do so.
Cognitive: word retreval, noun losses, executive dysfunction, attentional issues, functional dyslexic sx, difficulty learning new material, difficulty retrieving prior learned material.
Sight: diplopia, naystigmas (sp) rappid horizontal jerk in the right eye, slight lightening of the right optic nerve no visible lesion on MRI though. Loosing close and far vision.
Physical: Mainly muscle related, cramps, spasms affect speach to walking. Fatigue, heat sensitivity, tremor from hand to head. Repetition = loss of strength, pain or spasms, Sensory issues, tingles in same places which is now day in day out. Hot or wet sensation same spots but remitts. Vibration in left inner calf on off but mainly on. weird spots of goose bumps sometimes with the visual sometimes just the sensation. Internal temperature gage isn't working along with other autonomatic functions. Balance is gone etc I've probably forgotten a few things lol
Its all good, though when in a relapse it gets to be too much but i'll keep on laughing at the unexplained. lol
Cheers.......JJ
2. For everyone--How long have you been having sx and seeking answers?
It took 44 years to get a diagnosis
3. For everyone--How many drs. have you been to before getting a dx? At least a dozen Neurologists who all said I had severe Neurological problems starting at age two. Over 50 other Specialists.
4. For everyone- what are your symptoms? Are they increasing?
Double vision permanent
Vertigo permanent
Left side weakness, numbness permanent
Migraines daily
ON
TN
Diaphragm Spasms every few days
Throat Spasms
Nerve pain through out my body every day
Trouble walking every day
Cognitive issues, trouble talking, forgetting things permanent getting worse
Biting my tongue have to wear mouth guard
Bowel problems permanent
bladder problems permanent
zaps all over come and go
Had MS so long I did not know I had anything wrong. I did not go to a Doctor with problems they told me I had problems and I thought they were nuts.
I am sure I will lose my ability to walk probably in my 50's. I may even die from MS affecting my breathing at some time because of the increase of diaphragm involvement. I am enjoying every thing I can do now while I can. The drugs to slow progression and steroids do not work in my case.
I see progression more and more. Since I do not have relapses or remissions things just add up over time. I run on pure will power and tenacity but that is wearing out. Luckily I can take a lot of pain.
I keep myself as healthy as possible with diet and exercise and a positive attitude.
Alex
iambus- your sx sound like so many others here (both dx and un-dx). It is amazing that you are also in limboland with so much going on!
How are the doctors explaining this for you?
You mentioned UTIs. I never had those until this last year and then had several in a row. I asked both the neuro and the urologist if these had any connection to MS and they both said "no".
Interestingly, during this time I have acquired new symptoms--most that are still with me.
Also like you, I have had sx for many years but never connected them until this year. Thanks for answering!
How are the doctors explaining this for you?
You mentioned UTIs. I never had those until this last year and then had several in a row. I asked both the neuro and the urologist if these had any connection to MS and they both said "no".
Interestingly, during this time I have acquired new symptoms--most that are still with me.
Also like you, I have had sx for many years but never connected them until this year. Thanks for answering!
1. I am still undiagnosed
2. (undiagnosed) but have been having sx's for about 12 years. At first I thought all my sx's in the beginning were unrelated and random but about a year ago I realized that maybe they were all related and that it was once thing that was causing all of them
3. I have seen SO many drs :/ I've been to GP's, a rheumetologist and neurologist looking for answers but still left with none :(
4. Symptoms:
very bad fatigue :/
muscle weakness (unable to carry even 10 pounds some times)
muscles feeling exhuasted after barely doing anything
tingling and numbness in hands, feet, legs and arms (and a few times on my lips)
severe lower back pain
muscle stiffness (some times can't bend over because back is too stiff, stiffness in knees and neck some times too)
muscle tightness
tinnitus and ear seeming "stopped up"
random jabs of pain all over body
feeling like the back of my leg is getting wet
pain/uncomfortableness under my rib
tripping while walking :/
dropping things with my right hand :/
right foot a few times wouldn't work while driving :/
both heat and cold intolorance
cognative problems (really bad memory problems, speech problems, brain fog)
trouble gripping things
chronic UTI's
blurry vision and eye pain
I've had other sx's but can't remember everything right now
2. (undiagnosed) but have been having sx's for about 12 years. At first I thought all my sx's in the beginning were unrelated and random but about a year ago I realized that maybe they were all related and that it was once thing that was causing all of them
3. I have seen SO many drs :/ I've been to GP's, a rheumetologist and neurologist looking for answers but still left with none :(
4. Symptoms:
very bad fatigue :/
muscle weakness (unable to carry even 10 pounds some times)
muscles feeling exhuasted after barely doing anything
tingling and numbness in hands, feet, legs and arms (and a few times on my lips)
severe lower back pain
muscle stiffness (some times can't bend over because back is too stiff, stiffness in knees and neck some times too)
muscle tightness
tinnitus and ear seeming "stopped up"
random jabs of pain all over body
feeling like the back of my leg is getting wet
pain/uncomfortableness under my rib
tripping while walking :/
dropping things with my right hand :/
right foot a few times wouldn't work while driving :/
both heat and cold intolorance
cognative problems (really bad memory problems, speech problems, brain fog)
trouble gripping things
chronic UTI's
blurry vision and eye pain
I've had other sx's but can't remember everything right now
Sumana-
I guess I asked that first question wrong. I was just wondering who is un-dx and who has been dx. :D
Wow 10 years to wait for a diagnosis! That is a really long time to wonder what is going on. It surprises me how many people are age 50+ who seem to have had issues most of their lives and not had a diagnosis for decades. Maybe this is due to the lack of more sophisticated equipment back then.
I am so sorry to hear you are losing strength. I will be praying for you that you gain strength and that your treatments work. Let us know how you are doing OK?
I guess I asked that first question wrong. I was just wondering who is un-dx and who has been dx. :D
Wow 10 years to wait for a diagnosis! That is a really long time to wonder what is going on. It surprises me how many people are age 50+ who seem to have had issues most of their lives and not had a diagnosis for decades. Maybe this is due to the lack of more sophisticated equipment back then.
I am so sorry to hear you are losing strength. I will be praying for you that you gain strength and that your treatments work. Let us know how you are doing OK?
1. How may of you are still un-dx? n/a
2. For everyone--How long have you been having sx and seeking answers? Ten years. I was dx last year at age 60.
3. For everyone--How many drs. have you been to before getting a dx? Too many to count. My PCP, internist, orthopedic, vascular, rumotologist, pain specialist, chiropractors, two neuro (the second dxing me)
4. For everyone- what are your symptoms? Are they increasing? Back Pain. No. However without monthly steroids I am no longer moving.
I don't want to hijack this thread but I am losing more and more strength. I am to go on a shot that is like steroids then nothing for three months while preparing for Tysabri. I just have to wait it out. If you don't hear from me...I will be back when I get some mobility again.
2. For everyone--How long have you been having sx and seeking answers? Ten years. I was dx last year at age 60.
3. For everyone--How many drs. have you been to before getting a dx? Too many to count. My PCP, internist, orthopedic, vascular, rumotologist, pain specialist, chiropractors, two neuro (the second dxing me)
4. For everyone- what are your symptoms? Are they increasing? Back Pain. No. However without monthly steroids I am no longer moving.
I don't want to hijack this thread but I am losing more and more strength. I am to go on a shot that is like steroids then nothing for three months while preparing for Tysabri. I just have to wait it out. If you don't hear from me...I will be back when I get some mobility again.
1. Diagnosed three and a half years ago
2. I first starting exhibiting symptoms years before they found out what was going on-- 12-15 years, or so.
3. I've been to about four rheumatologist and two neurologists. The second neurologist diagnosed me.
4. I've had all of the symptoms that are probably on the list of possible MS symptoms--too numerous to remember all of them.
Seizure
fatigue!!!!!!!!!
numbness
weakness
dropping stuff held in right hand over and over again
tripping over my right foot
vision problems-- double and blurred vision, red saturation problem, shaking eye, crossing eye, dilated pupil on right, optic neuritis right eye
Uhthoff's- weakness, vision blackening, tremors
severe pain in feet (burning and very painful) with walking problems
Hiccups
spasticity & pain
muscle spasms & pain
muscle jerking
sleep starts (jerking before getting into a deep sleep)
waking up during naps or at night gasping for air
intolerance to cold
cold right leg
intolerance to heat
slurred speech
Esophageal spasms
GERD
Tremor
Vertigo -- quick head twirlies-- maybe a feeling of unconsciousness, but quick
Balance issues
Swallowing problems-- choke a lot. Especially on liquids through a straw
Head tremor
Bladder and bowel issues (retention, constipation, accidents, leakage)
Zaps, zings, stabbing pain, and shocks
Paraethesia- lots (vibrations, creepy crawly feeling on one side of head, etc.)
vibrations (like a cell phone on vibrate)-- upper right thigh mostly
hearing- sensori-neural hearing loss both ears, but worse in one ear.
tinnitus
deafness- lasting a few minutes
cognitive dysfunction (memory, attention, understanding what is said to me)
attention deficit disorder
depression
trigemenial neuralgia
Other problems probably not associated with MS:
hypothyroidism (treatment helped with some of the symptoms listed above)
positive low-titer ANA (1:160)
high blood pressure
irregular heart beat (way better)
increased hair loss (off and on)
joint pain (which incidently, is gone after thyroid replacement treatment)
fibromyalgia (which my neuro said I probably don't have--pain is due to MS. Had only one trigger point pain)
costochondritis (perhaps only fibro symptom)
liver enzymes elevated (not anymore)
Raynaud's
I know there's other symptoms, but
2. I first starting exhibiting symptoms years before they found out what was going on-- 12-15 years, or so.
3. I've been to about four rheumatologist and two neurologists. The second neurologist diagnosed me.
4. I've had all of the symptoms that are probably on the list of possible MS symptoms--too numerous to remember all of them.
Seizure
fatigue!!!!!!!!!
numbness
weakness
dropping stuff held in right hand over and over again
tripping over my right foot
vision problems-- double and blurred vision, red saturation problem, shaking eye, crossing eye, dilated pupil on right, optic neuritis right eye
Uhthoff's- weakness, vision blackening, tremors
severe pain in feet (burning and very painful) with walking problems
Hiccups
spasticity & pain
muscle spasms & pain
muscle jerking
sleep starts (jerking before getting into a deep sleep)
waking up during naps or at night gasping for air
intolerance to cold
cold right leg
intolerance to heat
slurred speech
Esophageal spasms
GERD
Tremor
Vertigo -- quick head twirlies-- maybe a feeling of unconsciousness, but quick
Balance issues
Swallowing problems-- choke a lot. Especially on liquids through a straw
Head tremor
Bladder and bowel issues (retention, constipation, accidents, leakage)
Zaps, zings, stabbing pain, and shocks
Paraethesia- lots (vibrations, creepy crawly feeling on one side of head, etc.)
vibrations (like a cell phone on vibrate)-- upper right thigh mostly
hearing- sensori-neural hearing loss both ears, but worse in one ear.
tinnitus
deafness- lasting a few minutes
cognitive dysfunction (memory, attention, understanding what is said to me)
attention deficit disorder
depression
trigemenial neuralgia
Other problems probably not associated with MS:
hypothyroidism (treatment helped with some of the symptoms listed above)
positive low-titer ANA (1:160)
high blood pressure
irregular heart beat (way better)
increased hair loss (off and on)
joint pain (which incidently, is gone after thyroid replacement treatment)
fibromyalgia (which my neuro said I probably don't have--pain is due to MS. Had only one trigger point pain)
costochondritis (perhaps only fibro symptom)
liver enzymes elevated (not anymore)
Raynaud's
I know there's other symptoms, but
I forgot - headaches. I get eye pain and a headache. Right side. A lot of my the physical symptoms are right sided.
BTW: This has been my Uthoff's symptom checker!!! I was able to determine that heat is in fact making my symptoms worse by these two things. It's hard to compare "worsening" with my symptoms because they are somewhat subjective symptoms. I don't have anything like a foot drop and I don't do a Neuro exam on myself, lol. I can't use that I drop things more; that doesn't really work either so I am able to compare "no pain" to "pain" as usually my pain is an all day thing that isn't related to fatigue of the eye... So, back to Uthoff's, one day, I live in the Seattle area and we tend to have pretty mild weather especially in the morning. We had an expected hot day and I was hosting a garage sale and by the time it became hot, my headache, eye pain and fatigue appeared and my scotoma was obvious. I decided to close it down and get inside. (Anyway, I'm rambling but I thought someone might benefit from seeing this comparables.)
Also, my symptoms are not "worse" --- I am not in a flare --- They do seem to be "progressive" in that they are changing and I have more symptoms now. Example: my muscle twitching was the presenting noticeable symptom for me a year ago. It started with mild intermittent twitching. I also had an increase in myoclonic jerks or "sleep starts, except I wasn't sleeping. This went from rarely to every day when resting. During my flare, they were chronic all day long and all over my body, in the most precarious places! Now - they are stronger (will move my fingers, toes) and they sometimes ache. I have myclonus from different parts of my body as well now - and the jerks occur randomly day or night - so before it was one location, now it is three of four and now it happens any time. This is the case with nearly all my symptoms.
I sort of feel "stabilized." but the fatigue is horrible at the moment. I think the bulk of my lesion load is in my brain stem and cerebella.
BTW: This has been my Uthoff's symptom checker!!! I was able to determine that heat is in fact making my symptoms worse by these two things. It's hard to compare "worsening" with my symptoms because they are somewhat subjective symptoms. I don't have anything like a foot drop and I don't do a Neuro exam on myself, lol. I can't use that I drop things more; that doesn't really work either so I am able to compare "no pain" to "pain" as usually my pain is an all day thing that isn't related to fatigue of the eye... So, back to Uthoff's, one day, I live in the Seattle area and we tend to have pretty mild weather especially in the morning. We had an expected hot day and I was hosting a garage sale and by the time it became hot, my headache, eye pain and fatigue appeared and my scotoma was obvious. I decided to close it down and get inside. (Anyway, I'm rambling but I thought someone might benefit from seeing this comparables.)
Also, my symptoms are not "worse" --- I am not in a flare --- They do seem to be "progressive" in that they are changing and I have more symptoms now. Example: my muscle twitching was the presenting noticeable symptom for me a year ago. It started with mild intermittent twitching. I also had an increase in myoclonic jerks or "sleep starts, except I wasn't sleeping. This went from rarely to every day when resting. During my flare, they were chronic all day long and all over my body, in the most precarious places! Now - they are stronger (will move my fingers, toes) and they sometimes ache. I have myclonus from different parts of my body as well now - and the jerks occur randomly day or night - so before it was one location, now it is three of four and now it happens any time. This is the case with nearly all my symptoms.
I sort of feel "stabilized." but the fatigue is horrible at the moment. I think the bulk of my lesion load is in my brain stem and cerebella.
I take Omeprazole for the GERD and it seems to work very well. My understanding is that the MS effects the strength of the muscle that keeps the acids from going back up your throat causing the GERD. Pretty much the same as MS effects the strength of legs and other muscles.
PS back when I first got ill one doctor suggested electric shock therapy for me. ( they definitely default to mental problems when they don't know what is going on.
Dennis
PS back when I first got ill one doctor suggested electric shock therapy for me. ( they definitely default to mental problems when they don't know what is going on.
Dennis
Thanks Starry eyes. Being originally diagnosed as crazy seems to be a commonality on this forum. Makes me wonder if that is the default diagnosis when things get complicated.
Anyone else?
Anyone else?
Diagnosed June 2009
18 months of symptoms
Symptoms: Loss of balance
Numb tingly feet
Blurred vision
Numb tongue
Leg weakness
# of Drs: 3
2 of which treated me as tho I was crazy and the 3rd Dr is a wonderful MS Specialist who dx me in 10 minutes.
Symptoms : My walking is getting harder where I need to use my cane. I have nerve pain that affects my upper chest area. Unable to work since Jan 2009 and have filed my 3rd time with an Atty for Disability.
18 months of symptoms
Symptoms: Loss of balance
Numb tingly feet
Blurred vision
Numb tongue
Leg weakness
# of Drs: 3
2 of which treated me as tho I was crazy and the 3rd Dr is a wonderful MS Specialist who dx me in 10 minutes.
Symptoms : My walking is getting harder where I need to use my cane. I have nerve pain that affects my upper chest area. Unable to work since Jan 2009 and have filed my 3rd time with an Atty for Disability.
SS- Great details! thanks for that. I am so glad you mentioned your handwriting changes when you are sick...mine does too! I just thought I was getting sloppy.
Supermum- I am so sorry for where you are right now. My heart goes out to you. Thank you for sharing how you are doing. BIG HUG to you right now!!
Sailorsong- that is a long journey of struggles. Amazing how much the human body can endure. I have GERDS too and don't remember this being an MS symptom. Very interesting. Have you found anything that helps it?
I am already seeing some patterns in our journeys.
I will have my left eye surgery tomorrow so I will be back online in a few days. Hopefully there will be more answers when I come back. This is very educational to me. I hope all of you are benefiting too.
Supermum- I am so sorry for where you are right now. My heart goes out to you. Thank you for sharing how you are doing. BIG HUG to you right now!!
Sailorsong- that is a long journey of struggles. Amazing how much the human body can endure. I have GERDS too and don't remember this being an MS symptom. Very interesting. Have you found anything that helps it?
I am already seeing some patterns in our journeys.
I will have my left eye surgery tomorrow so I will be back online in a few days. Hopefully there will be more answers when I come back. This is very educational to me. I hope all of you are benefiting too.
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