Thank you for sharing your story. My wife got diagnosed 4 months ago. I avoided researching MS - my method of compartmenalization. Not good, I know. But now I'm starting to deal with the emotions, like a grieving process while understanding what she's going through so I can be there for her. your story helps me understand her situation and so I can empathize with her. Thank you for sharing, again.
Never Google! Such bad advice. Best thing I ever did was go to a newly diagnosed day. Thanks for sharing your story, your symptoms sound similar to mine. Glad you came to terms with things, its always easier with positivity 🧡
If you have symptoms once you’ve been able to see a neurologist and get a brain MRI…make sure you are referred to see an MS specialist!! Do Not waste your valuable time seeing a general neurologist or a small clinic. Find an MS clinic in a big hospital.
Please show me how to get this chart your speaking of .I have so many things that come and go I have days I hurt so badly and so fatigued I can do nothing .I'm not the do nothing kind of girl ! Right now my feet are so bad I can't walk for 7 weeks I go to have x-rays nothing broken .Weeks later the foot Dr. he says extensive nerve damage see a vascular Dr. Started going up my legs and haveing stabbing pains in my arm and neck also tightness around my lower chest and ribs so I go to ER they do a vascular test and scold me for comeing in to ER for foot neuropathy! Im inwardly crying out, Wait you didn't hear the rest ! The next 2 days the tightness is worse even throwing up my ribs and back in pain along with the rest .My feet have been insane not just pins needles swelling but like cords pulling inside them and can't stand socks or the pillow feels like laying them on top metal rocks .I have been unable to work these weeks and just about to lose it! I've had milder symptoms come and go over the years .HELP
Thanks for your message. The link in blurb is now out of date, but Jessie's Enabled Warrior Tracker is available on Amazon at www.amazon.co.uk/ENabled-Warrior-Tracker-Jessie-Ace/dp/B08NMKDXM4/. For info on keeping a more basic symptom diary, see mstrust.org.uk/a-z/diary-symptoms Clearly something is causing the unpleasant symptoms you are experiencing. If you think your symptoms might be due to MS, the doctor to see will be a neurologist. More on how MS is diagnosed at mstrust.org.uk/about-ms/what-ms/how-ms-diagnosed It looks like you may be in the US, so might be worth making contact with the National MS Society (www.nationalmssociety.org/) who will have a better idea of health services (the MS Trust is a UK charity)
Hi, thanks for your story and insights. I have been having symptoms for 1-2 years. Off and on. Recently I had a brain, c spine, thoracic, lumbar and sacral MRI spine. Scanned with 1.5 Tesla without contrast. All came back normal with no evidence of lesions of demyelination. My dad has MS. I wonder if the scan was strong enough or if something was missed or if this is all in my head now, what do you think or should I rule out MS? Thanks
Thanks for your message. Although there are instances of several members of a family developing multiple sclerosis, MS is not hereditary and most people who develop MS have no previous family history of the condition. You can read more here: pulse.ly/drh1wys64w There is no definitive test for MS and diagnosis will involve considering the various symptoms and ruling out other explanations which means the process can take some time. An MS diagnosis can be a difficult and lengthy process as none of the symptoms seen in MS are unique to the condition, so diagnosis is made by differential diagnosis - the process of finding the cause of symptoms is by ruling out other possible causes - as there is no one test that on its own will show that you have MS. There are many other conditions where the symptoms seen mimic those seen in MS including infections and vitamin deficiencies to name just a couple. You can read more about how MS is diagnosed here: pulse.ly/yw4tou6zss It is sometimes a question of watching and waiting to see how symptoms develop as this can help distinguish MS from the other possibilities. All this can be very frustrating and worrying but it is quite a common experience and if your health professionals are unable to give you a diagnosis now, you should be able to agree a plan with them. The presence, distribution and type of lesions seen in an MRI scan are useful clues for a neurologist to be able to give a diagnosis of MS. The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. This means showing that damage has occurred at different dates/time (Dissemination in time, or DIT) and to different parts/areas (Dissemination in space or DIS) of the central nervous system. This distinguishes MS from other neurological conditions. The McDonald criteria use MRI evidence extensively and suggest that an MRI scan is made for everyone in whom an MS diagnosis is possible. I do hope this information is helpful for you. Take care, Corinne, MS Trust Enquiry Service 0800 032 3839 / ask@mstrust.org.uk
If you are in the UK, the first step would be to talk to your GP about the symptoms you are experiencing. If the GP can't explain and treat these symptoms, they can refer you to a specialist (which would be a neurologist if they think it might be MS or something nerve related). If the GP doesn't think it is MS and suggests another explanation or treatment, make sure there is a planned reviewed. If problems persist, then it will be necessary for the GP to rethink diagnosis, treatment or both. Worth also talking about the anxiety and mental health effects too. These may be the result of living with undiagnosed symptoms and will bring extra problems and amplify the symptoms you are experiencing. Finding ways to try and manage these may make the other symptoms a little easier to manage while you look for a definite diagnosis. (the MS Trust is a UK charity - if you are not in the UK, you can look for an MS organisation in your country at www.msif.org/living-with-ms/find-ms-support-near-you/) Simon, MS Trust Enquiry Service 0800 032 3839 / ask@mstrust.org.uk
Thank you for sharing your story. My wife got diagnosed 4 months ago. I avoided researching MS - my method of compartmenalization. Not good, I know. But now I'm starting to deal with the emotions, like a grieving process while understanding what she's going through so I can be there for her. your story helps me understand her situation and so I can empathize with her. Thank you for sharing, again.
Never Google! Such bad advice. Best thing I ever did was go to a newly diagnosed day. Thanks for sharing your story, your symptoms sound similar to mine. Glad you came to terms with things, its always easier with positivity 🧡
Yes yes yes. I totally understand and agree with you. I've had RRMS since 2013.
If you have symptoms once you’ve been able to see a neurologist and get a brain MRI…make sure you are referred to see an MS specialist!! Do Not waste your valuable time seeing a general neurologist or a small clinic. Find an MS clinic in a big hospital.
it took 30 yrs for me getting diagnosed
Please show me how to get this chart your speaking of .I have so many things that come and go I have days I hurt so badly and so fatigued I can do nothing .I'm not the do nothing kind of girl ! Right now my feet are so bad I can't walk for 7 weeks I go to have x-rays nothing broken .Weeks later the foot Dr. he says extensive nerve damage see a vascular Dr. Started going up my legs and haveing stabbing pains in my arm and neck also tightness around my lower chest and ribs so I go to ER they do a vascular test and scold me for comeing in to ER for foot neuropathy! Im inwardly crying out, Wait you didn't hear the rest ! The next 2 days the tightness is worse even throwing up my ribs and back in pain along with the rest .My feet have been insane not just pins needles swelling but like cords pulling inside them and can't stand socks or the pillow feels like laying them on top metal rocks .I have been unable to work these weeks and just about to lose it! I've had milder symptoms come and go over the years .HELP
Thanks for your message. The link in blurb is now out of date, but Jessie's Enabled Warrior Tracker is available on Amazon at www.amazon.co.uk/ENabled-Warrior-Tracker-Jessie-Ace/dp/B08NMKDXM4/.
For info on keeping a more basic symptom diary, see mstrust.org.uk/a-z/diary-symptoms
Clearly something is causing the unpleasant symptoms you are experiencing. If you think your symptoms might be due to MS, the doctor to see will be a neurologist. More on how MS is diagnosed at mstrust.org.uk/about-ms/what-ms/how-ms-diagnosed
It looks like you may be in the US, so might be worth making contact with the National MS Society (www.nationalmssociety.org/) who will have a better idea of health services (the MS Trust is a UK charity)
Hi, thanks for your story and insights. I have been having symptoms for 1-2 years. Off and on. Recently I had a brain, c spine, thoracic, lumbar and sacral MRI spine. Scanned with 1.5 Tesla without contrast. All came back normal with no evidence of lesions of demyelination. My dad has MS. I wonder if the scan was strong enough or if something was missed or if this is all in my head now, what do you think or should I rule out MS? Thanks
Thanks for your message. Although there are instances of several members of a family developing multiple sclerosis, MS is not hereditary and most people who develop MS have no previous family history of the condition. You can read more here: pulse.ly/drh1wys64w
There is no definitive test for MS and diagnosis will involve considering the various symptoms and ruling out other explanations which means the process can take some time. An MS diagnosis can be a difficult and lengthy process as none of the symptoms seen in MS are unique to the condition, so diagnosis is made by differential diagnosis - the process of finding the cause of symptoms is by ruling out other possible causes - as there is no one test that on its own will show that you have MS. There are many other conditions where the symptoms seen mimic those seen in MS including infections and vitamin deficiencies to name just a couple. You can read more about how MS is diagnosed here: pulse.ly/yw4tou6zss
It is sometimes a question of watching and waiting to see how symptoms develop as this can help distinguish MS from the other possibilities. All this can be very frustrating and worrying but it is quite a common experience and if your health professionals are unable to give you a diagnosis now, you should be able to agree a plan with them.
The presence, distribution and type of lesions seen in an MRI scan are useful clues for a neurologist to be able to give a diagnosis of MS. The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. This means showing that damage has occurred at different dates/time (Dissemination in time, or DIT) and to different parts/areas (Dissemination in space or DIS) of the central nervous system. This distinguishes MS from other neurological conditions. The McDonald criteria use MRI evidence extensively and suggest that an MRI scan is made for everyone in whom an MS diagnosis is possible.
I do hope this information is helpful for you.
Take care, Corinne, MS Trust Enquiry Service
0800 032 3839 / ask@mstrust.org.uk
I just know I have MS since I was a teen I have had symptoms on n off I just want help my anxiety n mental health is so bad n my eyes are so bad
If you are in the UK, the first step would be to talk to your GP about the symptoms you are experiencing. If the GP can't explain and treat these symptoms, they can refer you to a specialist (which would be a neurologist if they think it might be MS or something nerve related).
If the GP doesn't think it is MS and suggests another explanation or treatment, make sure there is a planned reviewed. If problems persist, then it will be necessary for the GP to rethink diagnosis, treatment or both.
Worth also talking about the anxiety and mental health effects too. These may be the result of living with undiagnosed symptoms and will bring extra problems and amplify the symptoms you are experiencing. Finding ways to try and manage these may make the other symptoms a little easier to manage while you look for a definite diagnosis.
(the MS Trust is a UK charity - if you are not in the UK, you can look for an MS organisation in your country at www.msif.org/living-with-ms/find-ms-support-near-you/)
Simon, MS Trust Enquiry Service
0800 032 3839 / ask@mstrust.org.uk
I find doctors have no idea what ms can do. I have lost all faith in my neurologist and the ms clinic. they have been absolutely no help in any way.
Sorry for your experience 😢same here
What causes MS?
Try the Mediterranean diet, use Herb's like turmeric, ginger and Asian ginseng and speak to a chiropractor.
Look into lions main mushroom as well.
Why do British people laugh about EVERYTHING? I suppose it's a defence mechanism