jjones2908
New member
- Joined
- Mar 12, 2014
- Messages
- 2
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- UK
- State
- London
Hello all,
I am a 29 year old MALE and new to this site and this is my first post. In fact, I have hovered around various forums for the last 3 years or so without ever posting anything but I have finally decided to break my silence.
I am not expecting someone to be able to tell me if I have the condition or not, but I am hoping that someone who either suffers with the condition or knows a good deal about it (or similar/related conditions) may be able to at least say, "yes that sounds familiar" (or not) and therefore help me decide whether to bother to pursue this line of enquiry with my doctor. I am well aware that doctors tend to switch off if they detect self-diagnosis so I would of course approach it carefully.
So I will try to keep this as concise as humanly possible and will order it by date, including episodes, tests, treatments etc. and anything else that happened around the same time which might be significant.
If you can't be bothered to read all of this (which I would totally understand!) please just skip to the current symptoms part at the bottom - under the line of bold writing)
>Dec 2010: trip to Poland (pretty cold, -10 deg C). I was aware of itching around my stomach with no rash and I seemed to be pretty tired a lot of the time. This seemed to subside and I began to forget about it. I mention this because I believe it's the first time I remember feeling anything unusual, even if it didn't affect my life too greatly.
>Feb-May/June 2011: after a session at the gym one evening I noticed that I had itching and prickling sensations all over my limbs and this would carry on for about 3 days (no sign of a rash). This is where things first really kicked off and for the next 3 months I was massively tired each day after being at work (office job). I would get home and try to eat dinner and then I'd just have to go to bed. Along with this, I was getting a tingling in my left foot which I couldn't seem to shake off. Slightly perplexed by these strange symptoms, I went to the doctor and had the normal set of blood tests done: liver, thyroid, glucose, inflammation, etc. My tests came back perfectly and it was put down to stress or anxiety. Well, 3 months of those symptoms definitely made me anxious. Anyway, they seemed to die down by May/June time and I carried on with life as normal (I even went travelling for 3 months).
>April 2012: after a mystery "virus" causing massive nausea for 3 weeks (no matter how hard I tried, I couldn't vomit) I felt that not all was right with me. I woke up one morning towards the end of the illness and had to crawl across the floor because my balance was so bad. This improved ever so slightly, but I began to have severe dizziness and nausea episodes at work out of absolutely nowhere and at one point I was told to go to A&E to get myself looked over. The doctor brushed me off and said I probably just had a virus. I then went and visited a second doctor who game me some antibiotics as they said it could be some kind of inner ear infection. Anyway, the medication did nothing and to this day, my balance has never returned to normal, although it does improve slightly from time to time.
>May/June 2012: during one day at work, I could feel a strange stiffness going through my right arm and it seemed to be getting worse and worse. By the time I got home, I was having to keep my hand closed because it seemed to ease the pain and stiffness slightly. I decided to have a bath to see if some warm water might help to loosen everything up a bit, but I noticed that the sensation of water touching my arm
was causing a strange electric type nerve pain up my arm which definitely alarmed me slightly. I also had some itching and stinging on the skin, again with no rash. I went to the doctor who did some strength and reflex tests but couldn't conclude anything and suggested I just try some strong pain killers. To this day, this has never properly gone away and my right arm and hand are generally uncomfortable most of the time now. The sensation that I get actually causes me nausea and I've never been sure of why this is. Interestingly, this flared up again recently but I will go into that later.
A few days after the arm situation began, I was walking with my partner when suddenly my right leg became what I considered to be "weak" and I ended up having to limp back to the car. I couldn't work out what it was, but I described it to my partner as feeling like my legs muscles weren't doing what I wanted them to do. I still limp on my right leg to this day and it appears to have caused some issues in my right foot (some numbness in the toes).
Another symptom that started up around the same time as this was manically twitching muscles all over and I found this twitching to be either spontaneous or reactive to something like me stretching a limb. Fortunately this died down a month or so later as it could be embarrassing (sometimes a whole finger would twitch involuntarily) but has since returned (see below). I've read that this could be B.F.S (benign fasciculation syndrome) and people have reported other sensory issues that go hand in hand with this.
>Dec 2012: Jan 2013: balance rehabilitation therapy with ENT with little success.
>April 2013: After visiting the doctors a few times complaining of the above symptoms, I was referred for a full spinal MRI so they could check for de-myelination or any other issues with by nerves, muscles or bones. Nothing came up apart from some bulging discs in my neck. Mostly relieving but slightly frustrating.
>2013 (throughout): various episodes of sore/tender skin with no rash (the type you get when you have the flu) - mainly ribs, inside of arms and back of head/neck
>Nov 2013 - present day: In November I had what appeared to be Gastroenteritis and this hit me pretty hard. On the first day of having it I somehow managed to have a seizure but fortunately my partner was in the next room and came and found me. Anyway, after a week, the G/E seemed to clear up and I thought everything was going back to normal. How wrong I was. I spent most of December feeling completely nauseated, to the point of being unbearable, dizzy, fatigued and pale in the face with dark rings under my eyes (I have NEVER had this for more than a few days before). Once the nausea started to die down in January, all of the symptoms that I am now experiencing started up again.
>Dec 2013: All manner of blood tests (more than I can currently remember) including liver, autoimmune profile, inflammation, 3 month glucose, glucose, hepatitis, iron, b12. All came back normal. Again, good, but also a bit frustrating.
>Feb 2014: Prescribed Neurontin - all well and good to mask some of the issues but I'd ideally like to try to find out what is going on.
I thought that perhaps the above would give some background on how I've come to where I am now, especially as I am suspicious of the timing of my symptoms (i.e. they seem to get worse after illnesses). When I think about it, I think that I probably experienced a few of the symptoms before December 2010 but I probably didn't really acknowledge them as being strange. For instance, I think I had a few episodes of sore skin as far back as 10 years ago.
Below I've made a summary of everything that I am currently experiencing (and have been for around 6-8 weeks now):
-Tender/burning (sometimes itching) skin sensations without rash: back of head and neck, temples (usually in combination with headache), chest/ribs, stomach, insides and backs of arms, fingers, insides of legs, groin and sides of feet. Most of the time it hurts to have my clothes rubbing my skin - especially around my ribs and fronts of my legs.
-Particularly severe burning/stinging and sharp pains in feet and sometimes hands/fingers
-Swelling/bruised spots (no visual indication): nipple area, armpits towards backs of arms - painful to press
-Pulled muscle sensation and/or feeling of swelling in area (often accompanied by sore skin as per first bullet point) after no exertion: mainly armpits and groin
-Severe joint aches: seems to have no relation to activity and mainly involves groin and inside of knees
-Severe upper body muscle aches - no relation to exertion
-Dull to sharp lower back pain on right side (could just be a normal back issue)
-Sharp/throbbing pains in wrists, fingers / finger joints and sometimes glands behind jaw
-Frequent nausea and stomach upset
-Frequent stabbing headaches in one temple or one side of forehead
-Chronic poor balance seemingly made worse by head movement (or lack of)
-Severe lightheadedness/head rushes when getting up from lying position
-Sudden dislike or crowds and closed in spaces (was never a problem before)
-Generally unhealthy complexion: dark lines under eyes, flushing, red spots and blotching and paleness
-Definite correlation between how I feel and changes in routine, sleep, diet (?), ambient temperature and emotional stress - seems to upset body entirely and set off problems again - i.e. why do I always seem to get a temporary "illness" (usually terrible nausea) when I have to get up at strange hours for flights to go on holiday?
-Massive problems finding the energy to get up in the morning
-A general sleepy/fuzzy-headed feeling (worsened vision) all through the day which limits activity - sometimes I feel tired to the point of feeling daunted and nauseated at certain points in the day (can even be first thing in the morning)
And to top all of this off, it's making me miserable now. I know that "something" is going on, I just don't know what.
I can see this has turned into a bit of an essay, so thank you so much if you've managed to get to the end of this. If anyone could give their thoughts, anything at all, I'd be really grateful.
Cheers,
Jeremy
I am a 29 year old MALE and new to this site and this is my first post. In fact, I have hovered around various forums for the last 3 years or so without ever posting anything but I have finally decided to break my silence.
I am not expecting someone to be able to tell me if I have the condition or not, but I am hoping that someone who either suffers with the condition or knows a good deal about it (or similar/related conditions) may be able to at least say, "yes that sounds familiar" (or not) and therefore help me decide whether to bother to pursue this line of enquiry with my doctor. I am well aware that doctors tend to switch off if they detect self-diagnosis so I would of course approach it carefully.
So I will try to keep this as concise as humanly possible and will order it by date, including episodes, tests, treatments etc. and anything else that happened around the same time which might be significant.
If you can't be bothered to read all of this (which I would totally understand!) please just skip to the current symptoms part at the bottom - under the line of bold writing)
>Dec 2010: trip to Poland (pretty cold, -10 deg C). I was aware of itching around my stomach with no rash and I seemed to be pretty tired a lot of the time. This seemed to subside and I began to forget about it. I mention this because I believe it's the first time I remember feeling anything unusual, even if it didn't affect my life too greatly.
>Feb-May/June 2011: after a session at the gym one evening I noticed that I had itching and prickling sensations all over my limbs and this would carry on for about 3 days (no sign of a rash). This is where things first really kicked off and for the next 3 months I was massively tired each day after being at work (office job). I would get home and try to eat dinner and then I'd just have to go to bed. Along with this, I was getting a tingling in my left foot which I couldn't seem to shake off. Slightly perplexed by these strange symptoms, I went to the doctor and had the normal set of blood tests done: liver, thyroid, glucose, inflammation, etc. My tests came back perfectly and it was put down to stress or anxiety. Well, 3 months of those symptoms definitely made me anxious. Anyway, they seemed to die down by May/June time and I carried on with life as normal (I even went travelling for 3 months).
>April 2012: after a mystery "virus" causing massive nausea for 3 weeks (no matter how hard I tried, I couldn't vomit) I felt that not all was right with me. I woke up one morning towards the end of the illness and had to crawl across the floor because my balance was so bad. This improved ever so slightly, but I began to have severe dizziness and nausea episodes at work out of absolutely nowhere and at one point I was told to go to A&E to get myself looked over. The doctor brushed me off and said I probably just had a virus. I then went and visited a second doctor who game me some antibiotics as they said it could be some kind of inner ear infection. Anyway, the medication did nothing and to this day, my balance has never returned to normal, although it does improve slightly from time to time.
>May/June 2012: during one day at work, I could feel a strange stiffness going through my right arm and it seemed to be getting worse and worse. By the time I got home, I was having to keep my hand closed because it seemed to ease the pain and stiffness slightly. I decided to have a bath to see if some warm water might help to loosen everything up a bit, but I noticed that the sensation of water touching my arm
was causing a strange electric type nerve pain up my arm which definitely alarmed me slightly. I also had some itching and stinging on the skin, again with no rash. I went to the doctor who did some strength and reflex tests but couldn't conclude anything and suggested I just try some strong pain killers. To this day, this has never properly gone away and my right arm and hand are generally uncomfortable most of the time now. The sensation that I get actually causes me nausea and I've never been sure of why this is. Interestingly, this flared up again recently but I will go into that later.
A few days after the arm situation began, I was walking with my partner when suddenly my right leg became what I considered to be "weak" and I ended up having to limp back to the car. I couldn't work out what it was, but I described it to my partner as feeling like my legs muscles weren't doing what I wanted them to do. I still limp on my right leg to this day and it appears to have caused some issues in my right foot (some numbness in the toes).
Another symptom that started up around the same time as this was manically twitching muscles all over and I found this twitching to be either spontaneous or reactive to something like me stretching a limb. Fortunately this died down a month or so later as it could be embarrassing (sometimes a whole finger would twitch involuntarily) but has since returned (see below). I've read that this could be B.F.S (benign fasciculation syndrome) and people have reported other sensory issues that go hand in hand with this.
>Dec 2012: Jan 2013: balance rehabilitation therapy with ENT with little success.
>April 2013: After visiting the doctors a few times complaining of the above symptoms, I was referred for a full spinal MRI so they could check for de-myelination or any other issues with by nerves, muscles or bones. Nothing came up apart from some bulging discs in my neck. Mostly relieving but slightly frustrating.
>2013 (throughout): various episodes of sore/tender skin with no rash (the type you get when you have the flu) - mainly ribs, inside of arms and back of head/neck
>Nov 2013 - present day: In November I had what appeared to be Gastroenteritis and this hit me pretty hard. On the first day of having it I somehow managed to have a seizure but fortunately my partner was in the next room and came and found me. Anyway, after a week, the G/E seemed to clear up and I thought everything was going back to normal. How wrong I was. I spent most of December feeling completely nauseated, to the point of being unbearable, dizzy, fatigued and pale in the face with dark rings under my eyes (I have NEVER had this for more than a few days before). Once the nausea started to die down in January, all of the symptoms that I am now experiencing started up again.
>Dec 2013: All manner of blood tests (more than I can currently remember) including liver, autoimmune profile, inflammation, 3 month glucose, glucose, hepatitis, iron, b12. All came back normal. Again, good, but also a bit frustrating.
>Feb 2014: Prescribed Neurontin - all well and good to mask some of the issues but I'd ideally like to try to find out what is going on.
I thought that perhaps the above would give some background on how I've come to where I am now, especially as I am suspicious of the timing of my symptoms (i.e. they seem to get worse after illnesses). When I think about it, I think that I probably experienced a few of the symptoms before December 2010 but I probably didn't really acknowledge them as being strange. For instance, I think I had a few episodes of sore skin as far back as 10 years ago.
Below I've made a summary of everything that I am currently experiencing (and have been for around 6-8 weeks now):
-Tender/burning (sometimes itching) skin sensations without rash: back of head and neck, temples (usually in combination with headache), chest/ribs, stomach, insides and backs of arms, fingers, insides of legs, groin and sides of feet. Most of the time it hurts to have my clothes rubbing my skin - especially around my ribs and fronts of my legs.
-Particularly severe burning/stinging and sharp pains in feet and sometimes hands/fingers
-Swelling/bruised spots (no visual indication): nipple area, armpits towards backs of arms - painful to press
-Pulled muscle sensation and/or feeling of swelling in area (often accompanied by sore skin as per first bullet point) after no exertion: mainly armpits and groin
-Severe joint aches: seems to have no relation to activity and mainly involves groin and inside of knees
-Severe upper body muscle aches - no relation to exertion
-Dull to sharp lower back pain on right side (could just be a normal back issue)
-Sharp/throbbing pains in wrists, fingers / finger joints and sometimes glands behind jaw
-Frequent nausea and stomach upset
-Frequent stabbing headaches in one temple or one side of forehead
-Chronic poor balance seemingly made worse by head movement (or lack of)
-Severe lightheadedness/head rushes when getting up from lying position
-Sudden dislike or crowds and closed in spaces (was never a problem before)
-Generally unhealthy complexion: dark lines under eyes, flushing, red spots and blotching and paleness
-Definite correlation between how I feel and changes in routine, sleep, diet (?), ambient temperature and emotional stress - seems to upset body entirely and set off problems again - i.e. why do I always seem to get a temporary "illness" (usually terrible nausea) when I have to get up at strange hours for flights to go on holiday?
-Massive problems finding the energy to get up in the morning
-A general sleepy/fuzzy-headed feeling (worsened vision) all through the day which limits activity - sometimes I feel tired to the point of feeling daunted and nauseated at certain points in the day (can even be first thing in the morning)
And to top all of this off, it's making me miserable now. I know that "something" is going on, I just don't know what.
I can see this has turned into a bit of an essay, so thank you so much if you've managed to get to the end of this. If anyone could give their thoughts, anything at all, I'd be really grateful.
Cheers,
Jeremy