I'm new here and just wanted to get some info from knowledgeable migraine sufferers. I'm a 28yr old female and a few months ago I started seeing my doctor due to dizzy spells/vertigo and fatigue. I was low in iron and had an iron infusion. Fatigue continued and got quite severe, didn't improve for about 6 weeks after I had the infusion. During this time I had an 'episode' with my right arm, tingling, numbness, weakness, hands cramping this lasted about at least 3hrs, went to bed and woke up with weakness and aching particularly in my hand joints that last for about 3 days with random shooting pains in up my arm and an on/off dull headache at the back of my skull. I now have a permanent slight weakness in my right hand/arm and the aching comes and goes depending on physical activity (I had not done anything to hurt it). Initially was treated as suspected stroke but after bloods and an MRI, that was ruled out. MRI showed a number of small non specific lesions on my brain. Was referred to neurologist. Before I saw him it had moved to my right leg and I was getting buzzing/tingling, aching and heavy dead leg sensation. I was getting a persistent twitch on my right side skull which is back now and feels like something is crawling through my hair, yuck! My fatigue had eased and my symptoms were coming and going less regularly by the time I saw him. He did some tests and said I do have a right side deficit in my arm and ordered Spinal MRI. He has ordered B12 and magnesium blood tests and gave me a script for a migraine preventative and string painkiller as he thinks it's migraines with aura. I don't normally need to take pain killers for the headaches when I get them, usually I can ignore it til it goes away. So I don't know why he prescribed me strong painkillers? Does this sound like migraine aura to you? From my research it seems migraine auras generally only last up to an hour, this certainly isn't the case for me. I don't have a history or family history of migraines. And obviously he thinks the right arm deficit is caused by something else. Any thoughts would be appreciated.
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PossibleAura
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Right, you tell a very interesting medical history. I have have Hughes Syndrome/APS, an autoimmune condition constantly missed by GP's and Neurologists, despite it first being described over 30 years ago, by Professor Graham Hughes himself.
People with this condition often but not always have relatives with other autoimmune conditions, including thyroid, family members past and present. Also maybe some people in the family with history of miscarriages or stillbirths or strokes and heart attacks at an early age, also likely dangerous reactions to the contraceptive pill.
Hughes Syndrome/APS also known as APS, or Antiphospholipid Syndrome - Sticky Blood, is easily treated and the blood tests for diagnosis are simple and cheap. I run a patient forum for this, many of our members are on here also for their migraines. Due to misdiagnosis, we even had a mention in The House of Lords regarding, awareness raising.
I list three blood tests below, Lupus Anticagulant is NOT a Lupus test, just a misleading name, although Hughes Syndrome/APS is like a cousin of Lupus. Blood tests are best done at the hospital as the samples taken are time sensitive.
Thanks Mary, I've been checked for thyroid, thrombosis, and clotting risks since they initially thought stroke, diabetes and pretty much everything except B12 and magnesium would any of those be related to APS?. I also had a clear brain CT scan. I have looked at APS online, I had a baby nearly 2 years ago and had no trouble conceiving or any problems with miscarriage. I did have irritable uterus but that was something else entirely and my placenta was piecemeal when she was born, not sure what caused that. Also before my results came back and confirmed it wasn't a stroke I was on an aspirin a day and I don't remember it making any difference. Don't know if that would rule out APS? This sort of 'episode' has happened before about 3 years ago, but not with the arm thing and ending in a deficit. Just bad dizziness/vertigo, feeling generally strange, fatigue, headaches at the back of my skull again and pins and needles. I have been concerned it possibly being MS, does APS cause lesions on the brain?
Hughes Syndrome/APS can cause lesions yes, also some people do manage to have some children, not every one ends in miscarriage. It is important to find out if ALL three of the tests I mentioned to you above were done, if not I would get them done! Most people maybe do not pass all three, I was sero negative for years, and then passed two of them. The placenta and brain is very affected by the disease - which of course is sticky blood! How long were you on the Aspirin? I had a difference as did my children after two weeks? MaryF
Sorry to hear about all these, and hopfully the doctor will help !
If there was no major stroke (that the doctor thinks happened), but if you get silent strokes (SBI) you may get lesions, as the name suggests you would not realise you had this stroke. Also, Lacunar stroke (LACI) can cause lesions.
As MaryF says - APS can cuase lesions - so there are lots of possibilities.
I am not sure why CT Scan was done when MRI was also done. CT Scan is harmful (can be 400 times more powerful than a single X-Ray !) and should only be done if it is absolutely necessary - unfortunately it is often done in order to save money as CT Scan is cheaper than MRI.
Similar story to yours in some respects re diagnosis, and symptoms. Been given painkillers too but loath to use due to side effects. I have b12 deficiency and coeliac. Both of these can give overlap symptoms as well as Marys suggestion of thyroid etc.
See what comes back re the b12 etc and go from there.
Thanks Lisa, I have replied to Mary above if it's of any interest to you. I dont have coeliacs, but B12 is definitely possible. I didn't start the preventative after I first saw the neuro because my symptoms had lessened so much so that if I took the meds I would have a hard time knowing if they were making any difference. It seems like they're coming back though, so I'll think I'll hold out a bit longer and if it flares up again, then I'll start taking them and go from there. Still need to get my spinal MRI and B12/magnesium levels checked too. So hopefully that will clear up that side of it. Do you have lesions on your brain?
Hi, My neuro appointment(which i waited five months for!) was less than satisfactory in my opinion. He had pre diagnosed me before i walked in the door. I have frequent recurring pins and needles, which is how i got the consultation. He did the finger to nose to his finger test and looked into my eyes, nothing else at all! Despite my saying that all this and many other symptoms began after i fainted and cracked my head on a concrete floor. So no scans or further tests whatsoever. Dismissed from clinic with tablets and gp follow up.
Poi. Dont take any b12 supplements prior to testing it will skew the result.
Most neurologists are rubbish - they think they should only treat MS or other condition and refer back migraine patients to GP. Only those who have interests and know how it feels like will cooperate and try to help migraine / headache patients - these doctors are hard to find and in NHS, it is fair to say, they are extinct.
and often MS can be diagnosed by mistake, and actually later it turns out to be Hughes Syndrome/APS as the lesions on scans can look similar and the symptoms over lap. MaryF
and also Hughes Syndrome/APS as most end up with a Thryroid problem also, also a problem with gluten intolerance or Coeliac Disease. MaryF
Your symptoms could be hemiplegic migraine aura. It's quite rare and mimics stroke.
Perhaps it would be good to request a referral to a headache neurologist at The NMC, or at a hospital, if your neurologist is not specialised in headaches?
I have Hemiplegic aura, and sometimes the numbness/weakness on one side can last for months. It's often best described as feeling heavy and a change in sensation.I also have spasms, twitches, tingling around the mouth and inside the mouth and eyes, it tends to develop slowly initially and travels up the body.
Brain stem migraine auras can also last longer and be more severe than other migraine types. There are a few different types of migraine, and they vary a lot. A headache specialist will know the criteria to diagnose you.
Good luck and I hope you gain a clear diagnosis soon.
Thanks everyone for your responses. There's so many things with similar symptoms it's just overwhelming. For now I am just going to follow neuros instructions so I started on Sandomigran last night. I have been a zombie all day. I could barely wake up this morning and not just through tiredness my body was physically fatigued and limp. I had trouble grasping my coffee cup and even trouble speaking. I've pretty much slept all day as I could barely keep my eyes open or move my body. Only now (3pm) am I feeling more awake but still very out of it. Has anyone taken this and Is this a fairly normal reaction? Will it ease as my body gets used to it? I have a toddler and I have no idea how I will cope tomorrow when hubby is at work if I'm the same or worse than today.
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