Aa
Am I crazy to suspect MS? LOOOONG sorry
Hello,
This seems like a supportive and open forum. Thanks.
My mother had MS. She was diagnosed when I was about 12 1/2 and died 2 years later from complications after 3 months in a coma. I have often felt symptoms that I recognise from her early experience, but they came and went and weren't too serious or long-lasting, so I ignored them and got on with my life. I am not in a positoin where I cannot ignore the symptoms. They are not too bad, I am not permanently disabled except for permanent depression. But they are getting worse and more frequent. I am having an MRI in a few weeks, but I had to insist on it. My GP is convinced that I am being silly. I certainly hope that I am - better to be silly than sick!
Can you guys please find time to look over my list of intermittent symptoms and tell me if you think I am crazy to suspect MS?
Current pattern of symptoms September 09
The illness has three phases. It commonly strikes during or shortly after a period where I have been stressed and not looking after myself properly. It sometimes happens for no apparent reason.
intense physical and mental tiredness,
slight problems concentrating and retaining information, that get worse as cycle progresses
sore eyes with a gritty and gunky thick feeling and light sensitivity,
Dry eyes and tongue
thick liquid running down the back of my throat (actually, when I say back of throat I guess I mean front of throat and back of mouth…),
mostly chills but with an inability to balance my temperature (when I get chills I wrap myself up but then after a few seconds I am too hot, so I remove a layer or poke my feet outside the doona, and then I'm shivering again). I get so cold that I have goose-bumps and so hot that I sweat,
a sense of being less mentally capable than usual, nothing definable, just as though I've lost some IQ points and have little momentum to my thoughts - this gets worse and eventually it is impossible to think normally, read or write without massive effort
Discomfort in my head – hard to explain the sensation. Like some parts are inflamed and others dry?
Lack of physical appetite
Fleeting but common pulsing tickles at or near some veins.
dizziness, floaty feeling,
taste disturbances,
Mild to moderate headaches (occasional migranes)
Slight clumsiness and balancing/orientation judgement off
temporary blurred vision (sometimes a lot of blinking will clear it, other times it's persistent for a day or so)
rushing and pulse sounds in my ears (becoming more pronounced and common).
increased depression and anxiety,
a pain in my hip or in my back at either side of my spine (pain in hip is common, and might happen before other stage 1 symptoms),
a strange light feeling in my lungs (not as common, but has happened quite a few times),
complete lack of emotion (becoming more pronounced and common), giving way to swings and roundabouts
inability to tolerate noise
Insomnia. Immovane not much use.
less nuanced and more black-and-white perspective, before developing into a swirl of emotions against inappropriate elevated or depressed background mood.
Ringing, rushing, pulsing, itching/tickling in ears with slight watery clear discharge.
Nausea? in bones/connective tissues rather than from digestive system
Digestion issues – things may remain undigested in my stomach for up to 24 hours; I’ll be sick long after eating and bring up undigested food. GP said it wasn’t possible, but that’s what sometimes happens. Very rarely I will pass in my stools a mixture of digested and undigested foods. Undigested foods have included tomato, onion, strong green plants eg dill, mustard seeds, meat.
I usually vomit once or twice, regardless of other digestive symptoms. Powerful expulsion.
Urine may be fast- and/or slow- flow, and may be quick to start or take forever even though I need to go.
Inability to concentrate
Very dry nasal cavity. Sometimes blood (not a nose bleed gush, slow crusty bleed)
Extra dry skin on hands and feet
Very bad eye pain, dots and lines of dots in vision, left eye has pulsating dark spot in lower far left, with circumference outlined in light then a narrower dark line around it.
Strained eye muscles, changes in focusing ability
Involuntary eye movements (this has happened once or twice, not common thank-goodness)
Reading is very hard and occasionally impossible, because the lines move, usually up and down at right side. Words and phrases move, jumble, dance, and there is a colour-ghost around letters especially on left side – dark green or undefined dark colour with slight outline of yellow light, and underneath where I’m looking there’s a bright streak of cigar-shaped light
Typing is hard because of sore and less responsive fingers, but also cognitive problems such as remembering how to spell and punctuate, automatically finding correct keys is slightly diminished, editing to find and remove mistakes takes a long time and huge effort, and is never completely correct.
Problems remembering how to spell, and judging if spelling is correct or not. It can take me ages to decide if something is right, even if I look it up it will bother me.
problems remembering the meaning of words, though I know I knew what they meant before.
I begin a thought, but forget where I was going, then try to get back to original thought, then forget…
Sense of dim light. Bright light hurts and I can’t see properly.
Tired sore muscles, not like lactic acid build up, just sore.
Bruises that I can’t explain, usually small like tip of finger (no nail mark), usually on thighs, stomach and arms. They heal quickly.
Like a wind is in my head, swoosh
Problems judging ‘correctness’ eg with spelling, grammar, punctuation, interactions with people (I tend to be overpolite and/or more blunt than normal), logic is present but hard to judge
Numbness in one or more parts of my body – right cheek, tip of tongue, middle of body-trunk under rib cage, below and right of heart, tip of nose
Muscles under jaw too relaxed, hard to swallow and talk. I can feel my epiglottis. I recently found that when I push up under my muscles in my lower jaw, my nose clears, more liquid down throat; and nose, eyes and throat are more lubricated. Associated sore throat and nerve pain in teeth upper and lower at the sides. Front teeth ok.
Facial tics (very bad only once and lasting about 36hrs, slight tics noticed a few times including the most recent time)
Lower back-ache
Strong odour from armpits that can’t be washed away or masked with fragrance (always). Mineral salt deodorant has no effect. This is more pungent than normal body odour. Very nasty and embarrassing.
Colours seem very bright and enjoyable, I have noticed reds most profoundly
Muscle spasms anywhere in body, one or two in each region, legs, toes, feet, pelvis, shoulders, facial
Overall, I can be sick for just over a day, or for up to 3 weeks. I might feel fine for a day or so…and then start over again :-(
Ok, hope somebody managed to wade through or skim through it. Thanks for that.
This seems like a supportive and open forum. Thanks.
My mother had MS. She was diagnosed when I was about 12 1/2 and died 2 years later from complications after 3 months in a coma. I have often felt symptoms that I recognise from her early experience, but they came and went and weren't too serious or long-lasting, so I ignored them and got on with my life. I am not in a positoin where I cannot ignore the symptoms. They are not too bad, I am not permanently disabled except for permanent depression. But they are getting worse and more frequent. I am having an MRI in a few weeks, but I had to insist on it. My GP is convinced that I am being silly. I certainly hope that I am - better to be silly than sick!
Can you guys please find time to look over my list of intermittent symptoms and tell me if you think I am crazy to suspect MS?
Current pattern of symptoms September 09
The illness has three phases. It commonly strikes during or shortly after a period where I have been stressed and not looking after myself properly. It sometimes happens for no apparent reason.
intense physical and mental tiredness,
slight problems concentrating and retaining information, that get worse as cycle progresses
sore eyes with a gritty and gunky thick feeling and light sensitivity,
Dry eyes and tongue
thick liquid running down the back of my throat (actually, when I say back of throat I guess I mean front of throat and back of mouth…),
mostly chills but with an inability to balance my temperature (when I get chills I wrap myself up but then after a few seconds I am too hot, so I remove a layer or poke my feet outside the doona, and then I'm shivering again). I get so cold that I have goose-bumps and so hot that I sweat,
a sense of being less mentally capable than usual, nothing definable, just as though I've lost some IQ points and have little momentum to my thoughts - this gets worse and eventually it is impossible to think normally, read or write without massive effort
Discomfort in my head – hard to explain the sensation. Like some parts are inflamed and others dry?
Lack of physical appetite
Fleeting but common pulsing tickles at or near some veins.
dizziness, floaty feeling,
taste disturbances,
Mild to moderate headaches (occasional migranes)
Slight clumsiness and balancing/orientation judgement off
temporary blurred vision (sometimes a lot of blinking will clear it, other times it's persistent for a day or so)
rushing and pulse sounds in my ears (becoming more pronounced and common).
increased depression and anxiety,
a pain in my hip or in my back at either side of my spine (pain in hip is common, and might happen before other stage 1 symptoms),
a strange light feeling in my lungs (not as common, but has happened quite a few times),
complete lack of emotion (becoming more pronounced and common), giving way to swings and roundabouts
inability to tolerate noise
Insomnia. Immovane not much use.
less nuanced and more black-and-white perspective, before developing into a swirl of emotions against inappropriate elevated or depressed background mood.
Ringing, rushing, pulsing, itching/tickling in ears with slight watery clear discharge.
Nausea? in bones/connective tissues rather than from digestive system
Digestion issues – things may remain undigested in my stomach for up to 24 hours; I’ll be sick long after eating and bring up undigested food. GP said it wasn’t possible, but that’s what sometimes happens. Very rarely I will pass in my stools a mixture of digested and undigested foods. Undigested foods have included tomato, onion, strong green plants eg dill, mustard seeds, meat.
I usually vomit once or twice, regardless of other digestive symptoms. Powerful expulsion.
Urine may be fast- and/or slow- flow, and may be quick to start or take forever even though I need to go.
Inability to concentrate
Very dry nasal cavity. Sometimes blood (not a nose bleed gush, slow crusty bleed)
Extra dry skin on hands and feet
Very bad eye pain, dots and lines of dots in vision, left eye has pulsating dark spot in lower far left, with circumference outlined in light then a narrower dark line around it.
Strained eye muscles, changes in focusing ability
Involuntary eye movements (this has happened once or twice, not common thank-goodness)
Reading is very hard and occasionally impossible, because the lines move, usually up and down at right side. Words and phrases move, jumble, dance, and there is a colour-ghost around letters especially on left side – dark green or undefined dark colour with slight outline of yellow light, and underneath where I’m looking there’s a bright streak of cigar-shaped light
Typing is hard because of sore and less responsive fingers, but also cognitive problems such as remembering how to spell and punctuate, automatically finding correct keys is slightly diminished, editing to find and remove mistakes takes a long time and huge effort, and is never completely correct.
Problems remembering how to spell, and judging if spelling is correct or not. It can take me ages to decide if something is right, even if I look it up it will bother me.
problems remembering the meaning of words, though I know I knew what they meant before.
I begin a thought, but forget where I was going, then try to get back to original thought, then forget…
Sense of dim light. Bright light hurts and I can’t see properly.
Tired sore muscles, not like lactic acid build up, just sore.
Bruises that I can’t explain, usually small like tip of finger (no nail mark), usually on thighs, stomach and arms. They heal quickly.
Like a wind is in my head, swoosh
Problems judging ‘correctness’ eg with spelling, grammar, punctuation, interactions with people (I tend to be overpolite and/or more blunt than normal), logic is present but hard to judge
Numbness in one or more parts of my body – right cheek, tip of tongue, middle of body-trunk under rib cage, below and right of heart, tip of nose
Muscles under jaw too relaxed, hard to swallow and talk. I can feel my epiglottis. I recently found that when I push up under my muscles in my lower jaw, my nose clears, more liquid down throat; and nose, eyes and throat are more lubricated. Associated sore throat and nerve pain in teeth upper and lower at the sides. Front teeth ok.
Facial tics (very bad only once and lasting about 36hrs, slight tics noticed a few times including the most recent time)
Lower back-ache
Strong odour from armpits that can’t be washed away or masked with fragrance (always). Mineral salt deodorant has no effect. This is more pungent than normal body odour. Very nasty and embarrassing.
Colours seem very bright and enjoyable, I have noticed reds most profoundly
Muscle spasms anywhere in body, one or two in each region, legs, toes, feet, pelvis, shoulders, facial
Overall, I can be sick for just over a day, or for up to 3 weeks. I might feel fine for a day or so…and then start over again :-(
Ok, hope somebody managed to wade through or skim through it. Thanks for that.
Thank you Lulu, Jens and Sister, for your comments, thought and ecouragement. It is a pretty long list, I know. My body seems to go nuts somtimes. Thankfully, I pretty much recover back to normal, but I am noticing some lingering effects these days.
Thyroid - thank-you, I'll ask my GP for that to be checked out.
I'm very scared. I've been a little in denial that there was anything serious wrong (!!) and I have had so much everyday-life stuff to contend with that I haven't had the energy to face this. Life seems to have delivered me to a period of relative calm, and so now I am able to face this problem.
I am having an MRI of the brain in a few weeks. $$$!!!.
Thyroid - thank-you, I'll ask my GP for that to be checked out.
I'm very scared. I've been a little in denial that there was anything serious wrong (!!) and I have had so much everyday-life stuff to contend with that I haven't had the energy to face this. Life seems to have delivered me to a period of relative calm, and so now I am able to face this problem.
I am having an MRI of the brain in a few weeks. $$$!!!.
They both said it so well, that I will only add that I will be Praying for you to find the answers you need, and to say welcome to our wonderful group.
{{{~!~}}}
{{{~!~}}}
Just at a glance, you do have a long list! As Lulu sways, some of them seem neurological, while others are gastrointestinal or possibly glandular.
The one thing that occurs to me is a thyroid deficiency - low thyroid levels can cause temperature regulation problems, as well as mess with your sense of well-being and your mental acuity.
The one thing that occurs to me is a thyroid deficiency - low thyroid levels can cause temperature regulation problems, as well as mess with your sense of well-being and your mental acuity.
Hi Bliarg,
Welcome to our MS community here at MedHelp - I hope you will find some of the answers you are looking for, as well as a sympathetic ear to your concerns.
You know you list of symptoms is quite lengthy - some of them appear neurological, and many of them are connected to other body systems. To look at this from a MS perspective, you need to shorten the list to those things which are just connected to the central nervous system.
Has your doctor referred you on to have neurological testing done, including MRI's? That would be a very good place to start.
I am so sorry that your mother lost the battle with MS in so many ways. This had to have impacted you and your concerns about MS for yourself. And in no way would we ever think that by sharing your mother's story you were being insensitive to us.
Please push for a referral and more testing - you deserve answers to your questions and symptoms.
be well,
Lulu
Welcome to our MS community here at MedHelp - I hope you will find some of the answers you are looking for, as well as a sympathetic ear to your concerns.
You know you list of symptoms is quite lengthy - some of them appear neurological, and many of them are connected to other body systems. To look at this from a MS perspective, you need to shorten the list to those things which are just connected to the central nervous system.
Has your doctor referred you on to have neurological testing done, including MRI's? That would be a very good place to start.
I am so sorry that your mother lost the battle with MS in so many ways. This had to have impacted you and your concerns about MS for yourself. And in no way would we ever think that by sharing your mother's story you were being insensitive to us.
Please push for a referral and more testing - you deserve answers to your questions and symptoms.
be well,
Lulu
Oh NO, how AWFUL of me to say what happened to my mother. I'm so sorry. I thought it might help you see why GP and, on some levels, me wonder if I am panicking needlessly. It was traumatic for me.
My mum was diagnosed after having the illness for 20 years, this was about 18 years ago so the treatments and understanding of the illness has progressed in that time. She was unable to cope with the diagnosis and so her mental health affected her physical health and she went into a tailspin. Just because that was her story, doesn't mean it will be yours or anyone elses. Please forgive my insensitivity.
My mum was diagnosed after having the illness for 20 years, this was about 18 years ago so the treatments and understanding of the illness has progressed in that time. She was unable to cope with the diagnosis and so her mental health affected her physical health and she went into a tailspin. Just because that was her story, doesn't mean it will be yours or anyone elses. Please forgive my insensitivity.
Arrgh, typo....
where I said:
....so I ignored them and got on with my life. I am not in a positoin where I cannot ignore the symptoms. They are not too bad, I am not permanently disabled except for permanent depression...
I meant to say I AM NOW (NOW NOW NOW) IN A POSITION WHERE I CANNOT IGNORE THE SYMPTOMS.
Sorry. Cheers
where I said:
....so I ignored them and got on with my life. I am not in a positoin where I cannot ignore the symptoms. They are not too bad, I am not permanently disabled except for permanent depression...
I meant to say I AM NOW (NOW NOW NOW) IN A POSITION WHERE I CANNOT IGNORE THE SYMPTOMS.
Sorry. Cheers
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
