Aa
MS or Migraines
Hi, I had my first neuro event in. May last yr, presented at ED with massive one sided headache, and sore arm, later that evening my right arm went numb and heavy and the next morning it was my whole right side, they did an MRI and found multiple white matter lesions and suggested possible deymilinating disease. Since the. I have had 2 more MRI, the most recent last week, but they reported no changes.
I had what I would call a relapse in February when I got weakness again on my right side and started getting a lot more tingling on both sides of my body. I had to use a cane to walk.
I have also had a nearly continuous headache since May last year.
I was first treated for Migraine, but none of the drugs have worked, or just made things worse. Any advice on what to do next would be great
I had what I would call a relapse in February when I got weakness again on my right side and started getting a lot more tingling on both sides of my body. I had to use a cane to walk.
I have also had a nearly continuous headache since May last year.
I was first treated for Migraine, but none of the drugs have worked, or just made things worse. Any advice on what to do next would be great
I saw my GP last week and he thinks that if it was MS would be lots of big lesions... I didn't question this as from what I have read this isn't always the case, anyway we are treating as though migraine but I am taking a wait and see attitude, I had a hugely busy weekend and ended up so exhausted I slept all afternoon and had numbness and tingling in my legs along with worsened headache...
I got my MRI reports, were done on tesla 1.5, so not sure that anything new would even bloody show up. Am quite frustrated at the moment, the second MRI said some small changes to some lesions so I am really not convinced this isn't MS.
Hi, thanks for that, heard from neuro today that he doesn't think it's active MS if that is a thing, and that he thinks the lesions point towards migraine, and still very confused and not sure whether to get another opinion or just try to live for now till some thing changes or not.
How about your vitamin D levels? I would definitely recommend having blood tests for APS. (now called Hughes Syndrome after it's founder Prof Hughes) There are 3 blood tests involved which are to be repeated a couple of months later. Also have a read of the APS / Hughes Foundation website because MS & Hughes Syndrome /APS mimic each other very closely. APS does cause migraines & if you click on the symptoms & then onto the tab that say "brain" you will see what I mean. I was so worried about this one I have been tested several times now.
The MRI may have been done on a 3 tesla as these machines have been rolled out quite widely now. If your Neuro wants to do further MRI's on you then he will no doubt suggest a stronger machine if it's not already been done on one. I only had my original ones done on a 1 tesla mainly because I think there were concerns about my Port in my chest. There are many sequences on MRI including T1 & T2, Flair & Sagital (?sp) which shows lesions in different ways.
If you continue to get the migraine headaches then I have heard of a new nasal spray on the market made by a Neuro who also suffers migraines. I haven't tried it yet but I have heard great things about it. It's called Ausanil & basically contains all natural ingredients like Capsicum (like the hot rub for painful joints) which deadens the nerve endings & can cease a migraine in moments. I have just received an email today saying I can now purchase it from the US to my home in Australia. Let me know if you need more information.
Take care,
Karry.
The MRI may have been done on a 3 tesla as these machines have been rolled out quite widely now. If your Neuro wants to do further MRI's on you then he will no doubt suggest a stronger machine if it's not already been done on one. I only had my original ones done on a 1 tesla mainly because I think there were concerns about my Port in my chest. There are many sequences on MRI including T1 & T2, Flair & Sagital (?sp) which shows lesions in different ways.
If you continue to get the migraine headaches then I have heard of a new nasal spray on the market made by a Neuro who also suffers migraines. I haven't tried it yet but I have heard great things about it. It's called Ausanil & basically contains all natural ingredients like Capsicum (like the hot rub for painful joints) which deadens the nerve endings & can cease a migraine in moments. I have just received an email today saying I can now purchase it from the US to my home in Australia. Let me know if you need more information.
Take care,
Karry.
Morning, my b12, thyroid etc were checked two weeks ago and came back normal. My MRI was done on a closed machine, it mentions flair on the report, not sure if 3t or not.
Hi Poppy, I talked to Annette king recently and she wants our ms protocols etc to be brought into line with Australia as we are slipping behind... I have been in touch with the MS society, but was waiting to know more from specialist. I live in Palmerston North.
I can relate to the massive one sided headache. Had it once and never care to have it ever again as it was so bad I couldn't even cry as this made it worse. A trip in an ambulance and massive dose of opiates were required to take the edge of it. :-(
If you do manage to get a definite diagnosis, be aware that the MS Society here are currently lobbying parliament for Tysabri to be added to the Pharmac schedule so there might soon be more options than the interferons and Copax.
Best wishes
Poppy
If you do manage to get a definite diagnosis, be aware that the MS Society here are currently lobbying parliament for Tysabri to be added to the Pharmac schedule so there might soon be more options than the interferons and Copax.
Best wishes
Poppy
Hi,
Sorry to hear of your pain and symptoms. Karry gives a lot of great information.
I, too, am still waiting now 11 years for MS diagnosis, so Karry is so right about that. It is terrible being in Limboland. For me personally, I still have no lesions on MRIs. When I first found the forum in 2003 or 2004, someone told me it took them 13 years to be diagnosed.
I would also suggest using the "Journal" area in the forum to keep a diary of your symptoms. This is very helpful to your neurologist and/or physicians.
I also suffer from severe migraine attacks on one side or the other. I had them starting in the fall until about March of this year. My neurologist referred me to a Pain Management Unit for pain medicine. Dilaudid shots or pills are the only thing that even touches the pain. I have classic migraine with aura.
We have all been where you are and this forum has been very helpful for all those seeking help and information. Stay well.
terri
Sorry to hear of your pain and symptoms. Karry gives a lot of great information.
I, too, am still waiting now 11 years for MS diagnosis, so Karry is so right about that. It is terrible being in Limboland. For me personally, I still have no lesions on MRIs. When I first found the forum in 2003 or 2004, someone told me it took them 13 years to be diagnosed.
I would also suggest using the "Journal" area in the forum to keep a diary of your symptoms. This is very helpful to your neurologist and/or physicians.
I also suffer from severe migraine attacks on one side or the other. I had them starting in the fall until about March of this year. My neurologist referred me to a Pain Management Unit for pain medicine. Dilaudid shots or pills are the only thing that even touches the pain. I have classic migraine with aura.
We have all been where you are and this forum has been very helpful for all those seeking help and information. Stay well.
terri
Thanks, my lumbar puncture results were negative, and I have asked to see the latest reports and slides if possible, I am trying to be patient but it's hard when one answer seems more likely than the other. Are there any other tests I should be requesting?
Well high from nearby Australia!!!!
I am glad you are pleased with the Neuro you have now & a wise decision to toss the other one who sounded a bit like an idiot to me. I am guessing your Neuro will want to do further testing because I believe it's highly unusual for migraine to affect the Corpus Callosum.
You are also showing abnormalities on examination which should warrant further investigation. The duration of 6 weeks seems too long for migraine but certainly not unheard of.
I would like to reassure you that MS is a pretty slow moving disease so please don't worry too much if it takes a while to diagnose. There are many who have been years awaiting dx. I had MS for over 15 years & have just been dx'd last year.
There are other tests the Neuro can order such as Evoked Potentials & LP as well as lots of blood work to exclude mimics of MS such as vitamin deficiencies. If you have your doubts on this being migraines then I would be asking for further testing.
Karry.
I am glad you are pleased with the Neuro you have now & a wise decision to toss the other one who sounded a bit like an idiot to me. I am guessing your Neuro will want to do further testing because I believe it's highly unusual for migraine to affect the Corpus Callosum.
You are also showing abnormalities on examination which should warrant further investigation. The duration of 6 weeks seems too long for migraine but certainly not unheard of.
I would like to reassure you that MS is a pretty slow moving disease so please don't worry too much if it takes a while to diagnose. There are many who have been years awaiting dx. I had MS for over 15 years & have just been dx'd last year.
There are other tests the Neuro can order such as Evoked Potentials & LP as well as lots of blood work to exclude mimics of MS such as vitamin deficiencies. If you have your doubts on this being migraines then I would be asking for further testing.
Karry.
I apparently have subtle neuro signs, eg hyper reflexia, slight balance changes, sensation differences on right side.
Thanks
Demelza
Thanks
Demelza
Hi, my neuro is pretty good, the first one I saw suggested MS, migraine or conversion disorder. I have now changed neuro and he ordered the latest MRI to try to diagnose or rule out MS. I never had migraines before May last year, both events lasted about 6 weeks before getting better with some residual weakness.
The first MRI said multiple lesions in frontal lobe and subcortical region, a thin layer in pericallosal region, largest was 6mm,
The first MRI said multiple lesions in frontal lobe and subcortical region, a thin layer in pericallosal region, largest was 6mm,
Hi there & welcome to the MS Community.
Do you have the report from the MRI & if you do where were the lesions located? I would suggest having a spinal MRI which can separate the MS versus Migraine question here.
Unfortunately migraines can cause lesions in certain areas of the brain & one of those areas is the Periventricular which is also in the criteria for dx MS. Can I ask how long your attacks/flares lasted? Did you have symptoms such as light sensitivity & nausea at the same time?
I have MS but I also suffer from migraines so this issue was discussed with me at some stage. I have read that people with MS actually have a higher incidence of migraine & headache compared to the general population.
If I was in your shoes I would request an MRI of your C & T spine to check for lesions there because you definitely don't get lesions in your spinal cord from migraines. I would also suggest that you see a MS Specialist rather than a general Neuro in this situation as well. Has your Neuro brought up MS? Have you had any abnormalities on your Neurological examinations because this can tell a lot about what's going on?
I am sorry I don't have any answers for you but hopefully one of the more experienced forum members will have more advice for you.
Take care,
Karry.
Do you have the report from the MRI & if you do where were the lesions located? I would suggest having a spinal MRI which can separate the MS versus Migraine question here.
Unfortunately migraines can cause lesions in certain areas of the brain & one of those areas is the Periventricular which is also in the criteria for dx MS. Can I ask how long your attacks/flares lasted? Did you have symptoms such as light sensitivity & nausea at the same time?
I have MS but I also suffer from migraines so this issue was discussed with me at some stage. I have read that people with MS actually have a higher incidence of migraine & headache compared to the general population.
If I was in your shoes I would request an MRI of your C & T spine to check for lesions there because you definitely don't get lesions in your spinal cord from migraines. I would also suggest that you see a MS Specialist rather than a general Neuro in this situation as well. Has your Neuro brought up MS? Have you had any abnormalities on your Neurological examinations because this can tell a lot about what's going on?
I am sorry I don't have any answers for you but hopefully one of the more experienced forum members will have more advice for you.
Take care,
Karry.
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When they dx MS all other possibilities or mimics need to be excluded first. Your Neuro can exclude some of the mimics without testing as you may not have those particular symptoms to fit that condition. I would also let your Neuro know your concerns & often it comes down to a watch & wait situation.
Most importantly keep a journal of your symptoms, date, duration & brief explanation for your records. It can be a can be a long wait but that is sometimes the only way for the docs to know.
The other thing to mention is if your MRI was carried out on a closed machine of hopefully a 3 tesla strength using MS protocol. The MS protocol uses smaller slices than standard & so can pick up some of the smaller lesions & uses contrast dye to see if any of the lesions are active.
When I had my first MRI It was on a small magnet of 1 tesla without contrast. I later had an MRI on a 3 tesla machine which was able to pick up lesions in my spinal cord, brain stem, Juxta cortical & the Corpus Collosum which were not visible on the smaller machine. If you request a spinal MRI I would definitely think it's better to have it on a 3 tesla machine because spinal cord lesions can be hard to pick up.
Take care,
Karry.