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Long Story - Various Neurological Symptoms
My Story
I’m trying to think back now to where I think all this began – probably around 8 years ago now, I experienced a couple of periods of strange symptoms, the main one being a light headed and floaty feeling. This would go on for a month or so, and then dissappear as quickly as it arrived. At this time I was very fit, played football 4 times a week, and generally felt on top of the world, as a young 25 year old lad should.
Things recovered from that point, and I’m pretty sure I had no more symptoms until around 3 years ago (aged 30), when the same dizzy, light headed spells returned, along with a real feeling of pressure around the eyes, and a little blurred vision. I was also experiencing some hypoglycaemic symptoms at this time.
I went for an eye examination first, thinking this was the obvious cause, and was happy enough when the optician said that I had no problems with my eyes. I went to see my GP for the first time about these problems, after putting up with for a few months. He suggested getting my blood sugars checked, thinking about possible diabetes, which also turned out to be normal. I also had a full blood count taken, with no abnormalities found.
My GP at that time was happy enough to refer me to a neurologist, as I was just beginning to fear the worst, that I may have a brain tumour or similar. To avoid a long wait to see a neurologist on the NHS, I actually paid to see the same consultant on a private basis. After a brief exam, the neurologist was quite confident that I didn’t have a brain tumour, but was happy to transfer me to his NHS clinic, and see me there. After waiting a further 3 months, I got my appointment to see the same neurologist. Although he wasn’t concerned, he was happy to send me for a CT scan with contrast to allay my fears about having a brain tumour. He also suggested that I had the typical look of someone with myotonic dystrophy (characteristic long face, and early balding). He suggested that he also investigate this by sending me for nerve conduction studies, and an ECG, along with extensive blood tests. All this took a couple of months, and on my return to see the same neurologist, he confirmed that the CT scan was clear, and that the nerve conduction studies and ECG showed no sign of myotonia, although he still had suspicions.
He then suggested that I went to see an endocrine specialist, and said that he would write back to my GP suggesting this. With symptoms worsening, I agreed to this and received an appointment a month later ( I work in the pharmacy department at the hospital). More extensive blood and urine tests failed to uncover anything amiss, and I was beginning to sink into the depths of despair. My GP suggested anti-depressants might help, although I didn’t agree. At this point, I had a couple of months off work as I struggled to come to terms with the fact that I felt terrible, but the doctors were struggling to find anything wrong. I had a good job, wife, and lovely daughter. Life seemed so perfect, yet my constant health worries were constantly putting a dampener on everything I did.
Fast forward eighteen months, and I’ve been back and forth to a few different GP’s several times, with a couple of them suggesting that my problems might be psychological, which is very frustrating indeed. My symptoms now are worse than ever, and I’m going to list as many as I can below in no particular order.
· blurry vision with aching eyes. Any fast movement results in front of my eyes causes strange double/distorted vision.
· Everything appears to happen in some kind of fog, although slightly distorted.
· A constant heavy head, with difficuilty to think clearly. Almost feels as though I’m struggling to locate my thoughts at times.
· A feeling that I have insects crawling under the skin of my face, especially around the eyes, but also the temples, cheeks, and around the nose.
· I suffer a lot of stiffness in the back of my neck, usually accompanied by aching in the back of the head.
· Any fast movement – running or fairground rides etc. causes extreme balance problems – feel very dizzy, and often nauseous. Travelling by car often causes nausea, when it never used to.
· Constantly tired, even after a good nights sleep.
· Difficulty concentrating.
· I experience involuntary twitching of muscles, mainly in the thighs and upper arms.
· When I read aloud to my daughter, and during long conversations, my voice feels as though it’s becoming tired, and I feel as though moving the appropriate parts of my mouth to speak is becoming more difficult.
· Tinnitus in both ears, especially at night, or when I’m in a quiet place.
· Tingling feeling in face, arms and hands (worse on the right side).
· Stabbing pains in toes
· Strange ***** feeling almost anywhere on the body, almost like someone has stuck a pin in me. I’ve actually checked when I’ve been out of doors that I haven’t been stung by a wasp or similar.
· Strange tingling in the head – almost like pins and needles.
· “Electric shock” on top of head. Almost feels like something has landed on top of my head like a small stone or similar, with accompanying “cracking” sound.
· “Electrical current” feeling in hands, especially right.
· Aching pain in limbs, mainly arms, hands and feet.
· What feels like growing pains in legs, often at night.
· Warm feeling travelling up arms and legs, often into feet and hands
· Difficulty keeping hands still when performing intricate tasks.
· Terrible irritable bowel.
· Problems remembering things, and forgetting what I’m talking about during conversations.
· Sore throat
· Sensitivity to stimulants – caffeine/nicotine etc. (gave up smoking 14 months ago). Caffeine drinks cause sleepless nights and extreme alertness.
· Face feels really warm.
That’s probably not exhaustive, and I can appreciate that I’m presenting a wide variety of symptoms at this stage (some of which have only become apparent in the last 6 – 12 months.).
.My whole life is affected now. I don’t seem to be able to enjoy the things I used to love doing to the sam e extent I used to. I find it hard to look forward to holidays/xmas etc, because I know I won’t feel very good. I’m trying not to let this illness destroy my life, especially for the sake of my 6 year old daughter who I adore.
Everybody close to me tries to understand, but I can tell they are struggling to comprehend that I look so normal, yet claim I feel terrible. I try not to talk about it to people so much because of this.
I’ve asked my GP to refer me to neurology again, as he wouldn’t make a decision, saying that things could well be psycho-scematic. He’s now referred me, and I’m awaiting an appointment.
I guess what I’m asking here is, does anyone have any gut feelings on what I may be looking at from the symptoms I’ve described, (MS seems a possibility which is why I’ve posted here), and what tests should I be asking my neurologist to look at?
Thanks for taking the time to read my story, and for the wonderful website which offers such encouragement.
Rob
I’m trying to think back now to where I think all this began – probably around 8 years ago now, I experienced a couple of periods of strange symptoms, the main one being a light headed and floaty feeling. This would go on for a month or so, and then dissappear as quickly as it arrived. At this time I was very fit, played football 4 times a week, and generally felt on top of the world, as a young 25 year old lad should.
Things recovered from that point, and I’m pretty sure I had no more symptoms until around 3 years ago (aged 30), when the same dizzy, light headed spells returned, along with a real feeling of pressure around the eyes, and a little blurred vision. I was also experiencing some hypoglycaemic symptoms at this time.
I went for an eye examination first, thinking this was the obvious cause, and was happy enough when the optician said that I had no problems with my eyes. I went to see my GP for the first time about these problems, after putting up with for a few months. He suggested getting my blood sugars checked, thinking about possible diabetes, which also turned out to be normal. I also had a full blood count taken, with no abnormalities found.
My GP at that time was happy enough to refer me to a neurologist, as I was just beginning to fear the worst, that I may have a brain tumour or similar. To avoid a long wait to see a neurologist on the NHS, I actually paid to see the same consultant on a private basis. After a brief exam, the neurologist was quite confident that I didn’t have a brain tumour, but was happy to transfer me to his NHS clinic, and see me there. After waiting a further 3 months, I got my appointment to see the same neurologist. Although he wasn’t concerned, he was happy to send me for a CT scan with contrast to allay my fears about having a brain tumour. He also suggested that I had the typical look of someone with myotonic dystrophy (characteristic long face, and early balding). He suggested that he also investigate this by sending me for nerve conduction studies, and an ECG, along with extensive blood tests. All this took a couple of months, and on my return to see the same neurologist, he confirmed that the CT scan was clear, and that the nerve conduction studies and ECG showed no sign of myotonia, although he still had suspicions.
He then suggested that I went to see an endocrine specialist, and said that he would write back to my GP suggesting this. With symptoms worsening, I agreed to this and received an appointment a month later ( I work in the pharmacy department at the hospital). More extensive blood and urine tests failed to uncover anything amiss, and I was beginning to sink into the depths of despair. My GP suggested anti-depressants might help, although I didn’t agree. At this point, I had a couple of months off work as I struggled to come to terms with the fact that I felt terrible, but the doctors were struggling to find anything wrong. I had a good job, wife, and lovely daughter. Life seemed so perfect, yet my constant health worries were constantly putting a dampener on everything I did.
Fast forward eighteen months, and I’ve been back and forth to a few different GP’s several times, with a couple of them suggesting that my problems might be psychological, which is very frustrating indeed. My symptoms now are worse than ever, and I’m going to list as many as I can below in no particular order.
· blurry vision with aching eyes. Any fast movement results in front of my eyes causes strange double/distorted vision.
· Everything appears to happen in some kind of fog, although slightly distorted.
· A constant heavy head, with difficuilty to think clearly. Almost feels as though I’m struggling to locate my thoughts at times.
· A feeling that I have insects crawling under the skin of my face, especially around the eyes, but also the temples, cheeks, and around the nose.
· I suffer a lot of stiffness in the back of my neck, usually accompanied by aching in the back of the head.
· Any fast movement – running or fairground rides etc. causes extreme balance problems – feel very dizzy, and often nauseous. Travelling by car often causes nausea, when it never used to.
· Constantly tired, even after a good nights sleep.
· Difficulty concentrating.
· I experience involuntary twitching of muscles, mainly in the thighs and upper arms.
· When I read aloud to my daughter, and during long conversations, my voice feels as though it’s becoming tired, and I feel as though moving the appropriate parts of my mouth to speak is becoming more difficult.
· Tinnitus in both ears, especially at night, or when I’m in a quiet place.
· Tingling feeling in face, arms and hands (worse on the right side).
· Stabbing pains in toes
· Strange ***** feeling almost anywhere on the body, almost like someone has stuck a pin in me. I’ve actually checked when I’ve been out of doors that I haven’t been stung by a wasp or similar.
· Strange tingling in the head – almost like pins and needles.
· “Electric shock” on top of head. Almost feels like something has landed on top of my head like a small stone or similar, with accompanying “cracking” sound.
· “Electrical current” feeling in hands, especially right.
· Aching pain in limbs, mainly arms, hands and feet.
· What feels like growing pains in legs, often at night.
· Warm feeling travelling up arms and legs, often into feet and hands
· Difficulty keeping hands still when performing intricate tasks.
· Terrible irritable bowel.
· Problems remembering things, and forgetting what I’m talking about during conversations.
· Sore throat
· Sensitivity to stimulants – caffeine/nicotine etc. (gave up smoking 14 months ago). Caffeine drinks cause sleepless nights and extreme alertness.
· Face feels really warm.
That’s probably not exhaustive, and I can appreciate that I’m presenting a wide variety of symptoms at this stage (some of which have only become apparent in the last 6 – 12 months.).
.My whole life is affected now. I don’t seem to be able to enjoy the things I used to love doing to the sam e extent I used to. I find it hard to look forward to holidays/xmas etc, because I know I won’t feel very good. I’m trying not to let this illness destroy my life, especially for the sake of my 6 year old daughter who I adore.
Everybody close to me tries to understand, but I can tell they are struggling to comprehend that I look so normal, yet claim I feel terrible. I try not to talk about it to people so much because of this.
I’ve asked my GP to refer me to neurology again, as he wouldn’t make a decision, saying that things could well be psycho-scematic. He’s now referred me, and I’m awaiting an appointment.
I guess what I’m asking here is, does anyone have any gut feelings on what I may be looking at from the symptoms I’ve described, (MS seems a possibility which is why I’ve posted here), and what tests should I be asking my neurologist to look at?
Thanks for taking the time to read my story, and for the wonderful website which offers such encouragement.
Rob
Welcome to the MS Forum. We will do all we can to help you through your emotions and hopefully identify (reminder - we are not doctors and cannot diagnose you) some of your symptoms with some things that those with MS experience.
I personally think you are too old to have any type of Muscular Dystrophy. That's just my opinion. The best advice you have received is getting an MRI of the brain and the entire spiine using "MS PROTOCOL." Those two words are very important, as an MRI using MS Protocol is specifically geared to looking for MS. Your films should also be read by a neuroradiologist, if you are having an MRI using the protocol.
A CT scan is next to worthless, even with contrast dye, to be looking for MS. I do not think any of your doctor's were really looking for MS when they did the CT. Sometimes lesions will show up on CT, but the CT is not clear enough to identify the lesions as demeylinating lesions.
You know your own body and from what you are posting, I also do not think that this problem is caused by depression or anxiety. Just going through this medical hunt is enough to make you depressed. Tell your next doctor that, if he suggests anti-depressants. I will tell you, that alot of us with MS ARE on anti-depressants, because the disease is famous for causing depression. But realize that in your case, depression is NOT causing your symptoms.
Please keep us updated and let us know if we can help you further. You have come to a great place for compassion and help.
All the Best,
Heather
I personally think you are too old to have any type of Muscular Dystrophy. That's just my opinion. The best advice you have received is getting an MRI of the brain and the entire spiine using "MS PROTOCOL." Those two words are very important, as an MRI using MS Protocol is specifically geared to looking for MS. Your films should also be read by a neuroradiologist, if you are having an MRI using the protocol.
A CT scan is next to worthless, even with contrast dye, to be looking for MS. I do not think any of your doctor's were really looking for MS when they did the CT. Sometimes lesions will show up on CT, but the CT is not clear enough to identify the lesions as demeylinating lesions.
You know your own body and from what you are posting, I also do not think that this problem is caused by depression or anxiety. Just going through this medical hunt is enough to make you depressed. Tell your next doctor that, if he suggests anti-depressants. I will tell you, that alot of us with MS ARE on anti-depressants, because the disease is famous for causing depression. But realize that in your case, depression is NOT causing your symptoms.
Please keep us updated and let us know if we can help you further. You have come to a great place for compassion and help.
All the Best,
Heather
Hi Rob,
that isolated feeling from family and friends has been a recurrent theme here lately. We can have the most loving group surrounding us, but until they live in our bodies with the problems and unknowns they can't really understand. That's why forums such as ours here at MedHelp provide an invaluable service.
be well and stay in touch - you know how to find us if you need us!
Lulu
that isolated feeling from family and friends has been a recurrent theme here lately. We can have the most loving group surrounding us, but until they live in our bodies with the problems and unknowns they can't really understand. That's why forums such as ours here at MedHelp provide an invaluable service.
be well and stay in touch - you know how to find us if you need us!
Lulu
Thanks for your input. Still awaiting an appointment to see the neuro again, and trying to keep my chin up.
Sometimes it feels as though I'll have to go on feeling like this, and suffering with the pain for ever.
It's nice to have somewhere to turn to where people understand what you're going through. The limbo world can be a very lonely place at times. I have a family who love me very much, but their collective lack of understanding can be infuriating.
Take care all
Rob
Sometimes it feels as though I'll have to go on feeling like this, and suffering with the pain for ever.
It's nice to have somewhere to turn to where people understand what you're going through. The limbo world can be a very lonely place at times. I have a family who love me very much, but their collective lack of understanding can be infuriating.
Take care all
Rob
hi and welcome to the Medhelp MS forum. You are sure struggling with a boat load of symptoms- all of which sound neurological to me. I know next to nothing about the muscular dystrophy diseases such as Myotonic so I really can't comment.
Navigating the NHS to get help must be frustrating - all our UK members seem to struggle to get services too. Just be persistent in seeing the neuro and getting an MRI done sooner rather than later.
In the meantime I hope you will come through here often and share your questions, vent your frustration and overall let us join you on the journey.
my best,
Lulu
Navigating the NHS to get help must be frustrating - all our UK members seem to struggle to get services too. Just be persistent in seeing the neuro and getting an MRI done sooner rather than later.
In the meantime I hope you will come through here often and share your questions, vent your frustration and overall let us join you on the journey.
my best,
Lulu
Your symptoms are definitely neurological - I'm surprised that you haven't been scheduled for an MRI by now. As to whether it's MS - at this point, it could be any number of neurological diseases. After looking at the Wiki article for myotonic dystrophy, it sounds like a possibility as well.
So your next step is to get scheduled for an MRI with and without gadolinium contrast. Make sure the MRI is a high-Tesla one, preferably at least 1.5T. 3T is better - if it's available, get it. A clean MRI will at least eliminate the possibility of it being MS, and hopefully get you further down the road to diagnosis. Good luck!
So your next step is to get scheduled for an MRI with and without gadolinium contrast. Make sure the MRI is a high-Tesla one, preferably at least 1.5T. 3T is better - if it's available, get it. A clean MRI will at least eliminate the possibility of it being MS, and hopefully get you further down the road to diagnosis. Good luck!
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