Multiple Sclerosis. How long did it take your to get diagnosed with Multiple Sclerosis after you first symptoms of MS had presented themselves?

Stress Management for Multiple Sclerosis

 Multiple Sclerosis

As regular readers of this blog know we are running a series poll and blogs about our readers

diagnosis of multiple sclerosis.

You can read more here https://patienttalk.org/?p=399.  We have, at time of blogging, 74 responses so please drop over and find out more.

In today’s poll we are interested in finding out how long it took you too get diagnosed with  with multiple sclerosis after your first symptoms of MS had presented themselves.

Please take our poll below.  If you would like to add anything more please feel free to use the comments box.

Thanks very much in advance


MarilynRoberts

My car and a palm tree got into a nasty fight. Guess who won? I had a piece of titanium and 5 pins surgically installed to hold together the hip that my left leg was shoved through. Three years later an ER tech told me privately that the metal may have given me MS. If I could get that officially in writing we’d be having this conversation in my beach house in the virgin islands.

How to Diagnose Multiple Sclerosis [In 5 steps]

Multiple sclerosis awareness

Multiple sclerosis awareness

In this video I explain how to diagnose Multiple Sclerosis, in 5 steps. Want to understand how MS Neurologists confirm a diagnosis?

Then start watching this video right now! How to Diagnose Multiple Sclerosis [In 5 steps]

 

Multiple Sclerosis – Diagnosing MS

Tie One on for Multiple Sclerosis

It can be hard to tell whether your symptoms might be caused by multiple sclerosis (MS) at first, as some of the symptoms can be quite vague or similar to other conditions.

See your GP if you think you have symptoms of MS. Letting them know about the type and pattern of symptoms you’re experiencing in detail will help them determine whether you might have the condition.

If your GP thinks you could have MS, you should see a neurologist (a specialist in conditions of the nervous system) for a specialist assessment.

Tests for MS

Diagnosing MS is complicated because no single test can positively diagnose it. Other possible causes of your symptoms may need to be ruled out first.

It may also not be possible to confirm a diagnosis if you have had only one “attack” of MS-like symptoms. A diagnosis can only be made with confidence once there’s evidence of at least two separate attacks, although this may include signs of attacks on an MRI scan that you may not realise you have had.

Some of the tests you may need to confirm MS are outlined below.

Neurological examination

Your neurologist will look for abnormalities, changes or weakness in your vision, eye movements, hand or leg strength, balance and co-ordination, speech and reflexes.

These may show whether your nerves are damaged in a way that might suggest MS.

Magnetic resonance imaging (MRI) scan

magnetic resonance imaging (MRI) scan is a painless scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body.

It can show whether there’s any damage or scarring of the myelin sheath (the layer surrounding your nerves) in your brain and spinal cord. Finding this can help confirm a diagnosis in most people with MS.

A standard MRI scanner is like a large tube or tunnel. The machine is noisy and some people feel claustrophobic while the scan is done. Tell your neurologist if you’re worried about this.

Newer scanners are more open and work quicker than those used in the past, and most people have scans without any problems.

Evoked potential test

There are several types of evoked potential test.

The most common type assesses how well the eyes work. Light patterns are shown to the eyes while your brainwaves are monitored using small, sticky patches called electrodes placed on your head.

It’s a painless test and can show whether it takes your brain longer than normal to receive messages.

Lumbar puncture

lumbar puncture is a procedure to remove a sample of your spinal fluid by inserting a needle into the lower back. Spinal fluid is the fluid that surrounds your brain and spinal cord, and changes in the fluid can suggest problems with the nervous system.

The procedure is done under local anaesthetic, which means you’ll be awake, but the area the needle goes in will be numbed. The sample is then tested for immune cells and antibodies, which is a sign that your immune system has been fighting a disease in your brain and spinal cord.

Lumbar punctures are very safe, but are often uncomfortable and can cause a headache that occasionally lasts for up to a few days.

A lumbar puncture will often be performed to provide extra information if your symptoms or scans are unusual.

Blood tests

Blood tests are usually performed to rule out other causes of your symptoms, such as vitamin deficiencies or a very rare, but potentially very similar, condition called neuromyelitis optica.

Determining the type of MS

Once a diagnosis of MS has been made, your neurologist may be able to identify which type of MS you have.

This will largely be based on:

the pattern of your symptoms – such as whether you experience periods when your symptoms get worse (relapses) then improve (remissions), or whether they get steadily worse (progress)

the results of an MRI scan – such as whether there’s evidence that lesions in your nervous system have developed at different times and at different places in your body

However, the type of MS you have often only becomes clear over time because the symptoms of MS are so varied and unpredictable. It can take a few years to make an accurate diagnosis of progressive MS, as the condition usually worsens slowly.

Brain
The brain controls thought, memory and emotion. It sends messages to the body controlling movement, speech and senses.
Inflammation
Inflammation is the body’s response to infection, irritation or injury, which causes redness, swelling, pain and sometimes a feeling of heat in the affected area.
Lesions
A lesion is an abnormal change in an organ or body tissue because of injury or disease.
MRI
MRI stands for magnetic resonance imaging. It is the use of magnets and radio waves to take detailed pictures of inside the body.
Tie One on for Multiple Sclerosis

Tie One on for Multiple Sclerosis

Multiple sclerosis – How is MS diagnosed?

New Multiple Sclerosis Treatment

New Multiple Sclerosis Treatment

[Original article on NHS Choices website]

It can be hard to tell whether your symptoms might be caused by multiple sclerosis (MS) at first, as some of the symptoms can be quite vague or similar to other conditions.

See your GP if you think you have symptoms of MS. Letting them know about the type and pattern of symptoms you’re experiencing in detail will help them determine whether you might have the condition.

If your GP thinks you could have MS, you should see a neurologist (a specialist in conditions of the nervous system) for a specialist assessment.

Tests for MS

Diagnosing MS is complicated because no single test can positively diagnose it. Other possible causes of your symptoms may need to be ruled out first.

It may also not be possible to confirm a diagnosis if you have had only one “attack” of MS-like symptoms. A diagnosis can only be made with confidence once there’s evidence of at least two separate attacks, although this may include signs of attacks on an MRI scan that you may not realise you have had.

Some of the tests you may need to confirm MS are outlined below.

Neurological examination

Your neurologist will look for abnormalities, changes or weakness in your vision, eye movements, hand or leg strength, balance and co-ordination, speech and reflexes.

These may show whether your nerves are damaged in a way that might suggest MS.

Magnetic resonance imaging (MRI) scan

A magnetic resonance imaging (MRI) scan is a painless scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body.

It can show whether there’s any damage or scarring of the myelin sheath (the layer surrounding your nerves) in your brain and spinal cord. Finding this can help confirm a diagnosis in most people with MS.

A standard MRI scanner is like a large tube or tunnel. The machine is noisy and some people feel claustrophobic while the scan is done. Tell your neurologist if you’re worried about this.

Newer scanners are more open and work quicker than those used in the past, and most people have scans without any problems.

Evoked potential test

There are several types of evoked potential test.

The most common type assesses how well the eyes work. Light patterns are shown to the eyes while your brainwaves are monitored using small, sticky patches called electrodes placed on your head.

It’s a painless test and can show whether it takes your brain longer than normal to receive messages.

Lumbar puncture

lumbar puncture is a procedure to remove a sample of your spinal fluid by inserting a needle into the lower back. Spinal fluid is the fluid that surrounds your brain and spinal cord, and changes in the fluid can suggest problems with the nervous system.

The procedure is done under local anaesthetic, which means you’ll be awake, but the area the needle goes in will be numbed. The sample is then tested for immune cells and antibodies, which is a sign that your immune system has been fighting a disease in your brain and spinal cord.

Lumbar punctures are very safe, but are often uncomfortable and can cause a headache that occasionally lasts for up to a few days.

A lumbar puncture will often be performed to provide extra information if your symptoms or scans are unusual.

Blood tests

Blood tests are usually performed to rule out other causes of your symptoms, such as vitamin deficiencies or a very rare, but potentially very similar, condition called neuromyelitis optica.

Determining the type of MS

Once a diagnosis of MS has been made, your neurologist may be able to identify which type of MS you have.

This will largely be based on:

the pattern of your symptoms – such as whether you experience periods when your symptoms get worse (relapses) then improve (remissions), or whether they get steadily worse (progress)

the results of an MRI scan – such as whether there’s evidence that lesions in your nervous system have developed at different times and at different places in your body

However, the type of MS you have often only becomes clear over time because the symptoms of MS are so varied and unpredictable. It can take a few years to make an accurate diagnosis of progressive MS, as the condition usually worsens slowly.

Brain
The brain controls thought, memory and emotion. It sends messages to the body controlling movement, speech and senses.
Inflammation
Inflammation is the body’s response to infection, irritation or injury, which causes redness, swelling, pain and sometimes a feeling of heat in the affected area.
Lesions
A lesion is an abnormal change in an organ or body tissue because of injury or disease.
MRI
MRI stands for magnetic resonance imaging. It is the use of magnets and radio waves to take detailed pictures of inside the body.

Has the type of multiple sclerosis you have been diagnosed with changed over the years?

Types of multiple sclerosis

Types of multiple sclerosis

As you may know there are quite a few types of multiple sclerosis. Though if our previous polling is to be believed (and it concers with previous research I’ve conducted) around 60% of people with multiple sclerosis have been told they have relapsing remitting multiple sclerosis. Though a surprisingly high number do not know do not know into which group they fall. Around 7% in fact!

So why am I writing this blog?

Well one of the features of multiple sclerosis (which a number of our readers have mentioned here or on on MultipleSclerosisTalk) is that the type that a PwMS is diagnosed with can change overtime. Normally is is from relapsing remitting multiple sclerosis to another type , such as, progressive relapsing multiple sclerosis.

The aim of this blog is firstly to find out how common this occurrence is amongst our readers. So firstly we would ask you to take the poll below.

Secondly we were wondering if you could use the comments box below to share a few answers to the following questions:-

1) With which type of multiple sclerosis we you originally diagnosed? Which type did it change to?
2) How did you find out? Had you noticed any changed in your multiple sclerosis prior to this?
3) How has your MS treatment journey changed since the new diagnosis?
4) How did the change impact upon the life in general?

Please feel free to use the comments section below to share your answers or, indeed, add any part of your multiple sclerosis story you think will be of interest to our readers.

Many thanks in advance.

 

LisaJordan1 Diagnosed with RRMS in 1998. I have been very lucky and feel blessed that my relapses have not been more frequent and/or with residual symptoms. I have been on Betaseron since my diagnosis and steriods for my flare ups. I have been able to maintain my full time RN job thus far, don’t get me wrong there are days it is rough to do because of the fatigue or my leg is numb, but I want to continue working for as long as I can. I love my job. Realistically I know there will come a day that I will no longer be able to do my job any longer. MS will have progressed.
Maygrelle Diagnosed with RRMS in 1989.  Been in a wheelchair 3 times and told it was not likely I would walk again and each time I proved doctors wrong.  Received a “final” diagnosis of SPMS in 2011 which I believe is accurate.  I now walk with a walker or forearm crutches, no improvement since 2010.  Very discouraged. I’ve been on Avonex, Rebif, Copaxone, and Tecfidera.  Had two relapses this year (2015) since switching to Tecfidera.  I have since stopped taking Tecfidera and hope to start Tysabri soon.  Also considering high-dose Biotin.  I currently require a PCA 6 days a week for personal care, cooking, cleaning, and laundry.  I’ve had to drastically alter my life and hobbies.  I’m not happy.
Tojo1969 Originally diagnosed with RRMS in 1991,
Diagnosed with SPMS in 2012.
I am now confined to a wheelchair.
Not much changed really; It certainly hasn’t slowed me down
StaciR 1. RRMS -> SPMS
2. My legs were getting progressively weaker. No.
3. I was on Copaxone for a while, but I’m not on anything now. I’m in the midst of switching doctors, though, so we’ll see.
4. I accept help more readily. I don’t go out as much because it’s a hassle. I’ve asked for I’m looking for a house without steps. My MS is more visible to others, so I’ve had to answer more questions.
GrahamDaniells Initially RRMS about 22 years ago, changed to SPMS 10 years ago. I was on DMD, Avonex then Copaxone with occasional oral or intravenous steroids. Since the SPMS my mobility has steadily declined and I now have to use a wheelchair for any hope of getting around outside.
I have not worked since 2002 but not through choice.