[teachmom67]

I haven't been well for a while... A ton of weird syptoms without explaination. Shortness of breath, extreme exhaustion, dizziness, almost passing out, and then finally one night I had a MAJOR headache and went to bed early. My kids got home and woke me up after a visit with their dad. My 15yo son who is normally oblivious to things immediately noticed that my right eye was sagging. I didn't notice what he was talking about until I went to look in the mirror. It looked like someone had basically deflated the part of my face just around my rt. eye. I didn't remember it feeling weird or anything. I mostly just knew I had the headache. I could talk, walk, and think... etc. I got the MAJOR riot act from the doc the next day when I went in because I didn't go to the E.R. I had written it off as not a stroke because I could talk... etc. etc. They did an MRI right away and it looked fine so I wrote off a stroke or TIA. They set up an appointment with a neurologist because of the dizziness etc and then this and I really thought she would blow me off and say it was nothing and send me home. I have to have another MRI. This time with contrast because the first one was too soon to rule out a TIA. She explained it basically like if you put a REALLY tight rubber band around your finger and then took tests to look at tissue. At first it would look live and then after a number of days, it would be dead. The part of the brain effected would be small enough and take a little while to "look dead" so it often does not show up on very early MRI's without contrast. My exam results were pretty normal except for the fact that I had a pretty significant difference in cold sensation from one side of my face and body to the other. I had never notice that one. She also is running some labs, but I totally didn't think about the possibility of APS until after I got home and it hit me that it could be a possible explaination. I guess I will have to call her to see if she checked for those labs on her list. I go for the MRI Tuesday and am to call her on Fri for results.

At this point, I'm just so tired of feeling so rotten that I want answers more than anything.

Amy

 

[Katharine]

Hello Amy,

It sounds as if you are being thoroughly investigated for whatever did happen. I hope that it does provide some answers for you.

It is definitely worth checking whether bloods have been taken to check for APS. I would think they have but always worth checking.

:hug:
Katharine

 

[onetay]

Amy,
I am so sorry that this is happening to you, but I hope they do find an answer for the problems as sometimes not knowing is worse than knowing. I hope that you feel better soon.

 

[tbunny1]

:wow:Wow - what a scare that must have been. Thank goodness it did not progress into a major stroke or anything even more serious.

I would definatly talk to your doc about testing for APS. After my first stroke, it was only until I pointed it out that I was tested and diagnosed. Even when the test results came back positive, my neurologist was not convinced that APS could cause a stroke! APS is relatively new enough to the medical community that it is not always thought of as a diagnosis.

Getting immediate medical care and the new "clot buster" drugs on board are critical with a stroke, and minutes count. I don't know if your doctor discussed it with you, but perhaps you should talk to your family about how to recognize stroke symptoms, and what they should do.

My doctor instructed my husband to look for the following if he suspected another episode -
a) Smile - see if one side of the mouth droops
b) Raise both arms up to shoulder level, palms down, then turn them over palms up
c) While standing, close your eyes, and touch each of your index fingers to your nose.
If I am unable to perform these simple movements as usual, then he knows to call for an ambulance and get me to an emergency room.

My doctor said they would rather see me 19 times in the ER for a false alarm than for me not to come in on number 20. I bet your doctor did give you an earfull!

Bottom line is there is life after stroke (or strokes, in my case ), and they do not always fit into neat little diagnostic packages.

Keep us posted once you get your test results back.

Be Well

 

[KarolH]

I have APS and in 2005 I went blind in my right eye and although I could speak my speech was slurred. I had a TIA or CVA, which ever you want to call it.

Please let us know how your MRI goes once you get results. In the meantime I agree with Tbunny, dont wait. If something is not right then get to the ER pronto.

Good luck and keep us posted.

 

[Sage Hen]

Hi Amy,

I understand your frustration, and just wanting to know..why your feeling so terrible, at this point in time.

I hope your M.R.I. turns out o.k. and that you do feel better..very soon.

Sandy

 

[Clare.T]

How worrying for you Amy
I hope you can get fully tested quickly and get a better idea of what you are dealing with. The shortage of breath and fatigue might just be linked to it

We have a new government health campaign in the UK about strokes, called ActFAST.

F is for Face, A for arms, and S for speech, while T is for Time. Any one of F, A or S is a cause for immediate concern and emergency action.

http://www.nhs.uk/Actfast/Pages/default.aspx

I am sorry this has happened to you but it is a reminder to us all for ourselves and our families to get any sudden weird symptom checked ASAP. I am sure each of us has their stroke story.
F/A/S might not be involved at all.

My husband got up about 18 months ago, showered, shaved, got dressed went downstairs and got his breakfast ready. It wasn't until he opened the newspaper that he realised something was very wrong. He could see alright, but he was unable to read, to put the letters together to make words. He had to sound them out painfully, far worse than our 7 yr old grandaughter. He also had difficulties with spelling. It was terrible to see such a highly literate person, writing had been his career and he never ever used spellcheck, putting 'strowberys' for strawberries.

CAT and MRI showed that it was precisely that little area of the brain that processes reading and writing that had been affected by a stroke. The only sign of trouble had been an unusual bad headache the evening before and in the early night. A few years earlier he had woken from a nap and found he couldn't see for a few minutes. After lots of investigation it was determined that a stroke had affected his eyesight, leaving loss of peripheral vision in one eye.

Although he has largely regained his writing and reading skills he still has some difficulties finding the right words compared with how articulate he was before, although he passed all the speech therapist tests for reading comprehension and all.
He also has some cognitive problems ( absorbing and explaining information) which I have noticed tend to be far worse when his INR is too low - he's on blood thinners now and this INR is a measure of the thickness of the blood.

All the best
Clare

 

[KarolH]

That is a shame Clare.

I did not know this happened to your husband.

Glad he is ok now.

 

[b.moonster]

Hi Amy
I have had about 5 TIA's and one major stroke in the last 5 years. My advice is try and skip the denial stage it only makes things worse, I was 35 when I had my first and convinced myself that they had made a mistake, but I was completely exhausted, headaches were constant, confusion etc. made worse by me trying to carry on as if nothing was wrong, I learnt after that, unfortunately because the next one was a major stroke.
I was diagnosed with APS and SLE at this point.
The optimistic bit of this is, 5 years on (a sack full of daily meds) a completely moderated lifestyle, I am now 'well' in so far as the stroke issue is concerned (fingers always crossed) and work full time and faculties sort of intact!
I'm on high dose warfarin and test my own INR (have a coaguchek machine at home) on a regular basis.
I hope you can find a little hope in the message.
You will come out of this dark tunnel, and yes you'll still have Lupus, but you will much more prepared and prevent another TIA happening.
Good luck
Bee x

 

[Zoi]

Hi Amy :hugbetter:

I'm very sorry to hear about your TIA experience... It must have a been very scary to go through both for you and your family...

Now, TIAs or Transient Ischemic Attacks (or mini-strokes as they are sometimes called) are caused by a temporary blood flow disturbance to a specific part of the brain. This disturbance in blood flow results in a brief decrease in brain function of that specific part of the brain and it is what produces the stroke-like symptoms we experience during TIAs.

Transient Ischemic Attacks are as much a medical emergency as a full-blown stroke is, regardless of the fact that in a TIA the disturbance resolves by itself in a short amount of time (whilst in an actual stroke it doesn't) . The reason for that being that sometimes TIAs can be warning signs of impending stroke. Now I realize that is panic-inducing statement, so bear with me for a little while as I try to explain what is meant by it! About a third of the people that experience TIAs go on to live perfectly normal lives and never have another, another third of the people have recurring TIAs and the remaining third go on to have a stroke. That is NOT to say that once someone has a TIA they are necessarily going to have a stroke or are at high risk for a stroke. Doctors take into consideration a number of risk factors including the duration of the TIA, i.e. a TIA lasting around 60 minutes is usually deemed more "dangerous" than one lasting less than 60 minutes, blood pressure during an attack, symptoms the TIA caused (i.e. weakness on one side or speech disturbance but no weakness etc etc) and any underlying medical conditions that may cause one's blood to coagulate more easily.

On that note, did you find out if your doctor tested you for APS after all? If you do have APS please bear in mind that it is usually a very very treatable disorder and sometimes even a baby aspirin can be enough to provide symptom relief. If you haven't been tested for APS it might be an idea to talk to your primary doctor about getting tested. You can find more information on APS and the blood tests used to test for it on the "Related Conditions" part of this forum:

http://www.thelupussite.com/forum/showthread.php?t=52667

Something called vasculitis could also cause TIAs in lupus patients; vasculitis is a pretty general term and in layman's terms it usually refers to a disease process that involves the inflammation of blood vessels. There are many different forms of vasculitis, but the important thing here is that the blood vessel inflammation caused by vasculitis can result in a narrowing of those blood vessels that can sometimes be enough to disrupt blood flow to specific parts of the body. Vasculitis can affect blood vessels anywhere in the body and it can sometimes result in TIAs.

The reason I am mentioning this here is that if one's TIAs are APS related (i.e. due to a transient blockage of blood vessels caused by a clot; the emphasis here being on the word transient!) then more often than not there will be no findings on an MRI, MRI with contrast and/or MRA (that is Magnetic Resonance Angiography instead Magnetic Resonance Imaging) when the TIA has passed as the clot itself has resolved and blood flow will have been restored. If the TIA has lasted for a long time and has managed to destroy a good number of nerve cells in the area then this might show up on an MRI, but again it's not 100%. I don't really know if "damage" done by TIAs caused by vasculitis will show up on an MRA, perhaps someone who knows more about this will come along to answer that though!

What I'm trying to say is that if the contrast MRI turns up nothing, then that does NOT mean you did not have a TIA. What it does mean is that the TIA did not leave any lasting "damage" and TIAs often don't.

I had my first TIA about two years ago and it was a strange experience. It was very minor at first, just some sudden right sided weakness that went away on its own within 15 minutes or so and even though I went to A&E right away and my rheumatologist was called no one actually recognized the episode as a TIA. My docs thought it might be central nervous system inflammation from lupus and I didn't really know anything about TIAs so I didn't really have an opinion at the time (boy; that's changed now though! :lol: )! This experience repeated itself 2-3 times the following day and two days later I had a bizzare transient episode of speech loss (which we know now was transient aphasia from a small clot) and a transient loss of vision in one eye (which we now know was transient amaurosis fugax again from a clot). On the third day my right side became completely paralyzed, I couldn't speak properly, or swallow, my face on the right side "dropped" from the paralysis and that time it just wouldn't go away. My family called my neurologist and they had the excellent thinking of putting me on the line so he could hear how this affected my speech and he dropped everything with his team, called my rheumy and they all met us at A&E about 10 minutes later. Thankfully this was a TIA too, instead of a full blown stroke, but it lasted about an hour and a half; and the MRI/MRA I had done then during this attack is the only imaging study that has ever shown a TIA-related embolus (as the other ones were done after the TIAs had resolved). Now because I had recurrent TIAs and in a worsening pattern it was deemed I was high risk for a stroke and I was started on heparin shots to prevent this. The shots stopped the TIAs and the impending stroke the docs were so sure would follow...!

Having such an experience is definitely scary, but this is something that can be dealt with and controlled and it can go away with the proper treatment!
If you have another TIA do go to the hospital immediately for assessment, tests and possibly treatment! It really is a medical emergency!

I hope the contrast MRI went ok!

You're perfectly right about wanting to have some answers so this can be dealt with. I hope you get them very very soon. :blush:

Sending loads and loads of strengthening hugs your way :grouphug2: :grhug:

:flowery:

Zoi

Ps. Here's some links with information about TIAs:

http://www.nlm.nih.gov/medlineplus/ency/article/000730.htm

http://en.wikipedia.org/wiki/Transient_ischemic_attack

http://emedicine.medscape.com/article/794281-overview

 

[Lily]

Hi Amy,

I hope the MRA went ok and that you have some answers to your questions soon. I really hope as the others have said that they have tested you for APS.

Hi Zoi,

you asked :

I don't really know if "damage" done by TIAs caused by vasculitis will show up on an MRA, perhaps someone who knows more about this will come along to answer that though

Yes it does show up after the fact, however it looks much the same as other sorts of damage, so not particularly specific except that it's often found in the subcortical white matter ( there are exceptions to the rule though-mine ended up mostly there but were a couple of other places too - frontal and parietal lobes) .

love
Lily

 

[Zoi]

Thanks Lily!

:flowery:

Zoi

 

[teachmom67]

What is the difference between an MRA and an MRI? I had an MRI with contrast. The actual test went ok although my nose started itching part way through the second half and I had trouble staying still. I've never had that happen, but they covered my face with a cloth and I guess it tickled. Oh well. I should know something friday.

I did call the neurologist to ask about the APS testing and her nurse finally got back to me and said that she wanted to wait until my return appointment in a few weeks because she didn't know exactly what I was wanting/asking for. That gave me a heads up that she isn't at all familiar with APS. My gp had wanted me to start the asprin a day therapy. Will this at all effect this testing?

I've been having a lot of headaches, but really nothing big like the facial droop. I have been trying to find on-line what it could mean that I had sensory differences from one side to the other when she did the tuning fork thing on my face and arm. It was mostly a big temperature difference. The left side felt much colder. Does this mean something?

Amy

What is the treatment for TIAs caused by vasculitis?

 

[sushi]

sorry but im a little confused here, i have an appt with my neurologist tomorrow. and i dont know what to tell him. i have my mri results which came back normal. but im still very worried about vasculitis what should be the right questions to ask him. also i dont know if hes the right doctor to talk to about aps. im on aggrenox, i asked my new rhumey if she thinks i should stay on them and she wasnt sure she told me to ask the neurologist.

this whole vasculitis and aps thing is very confusing. i just dont want to get another tia.

 

[Lily]

Hi Amy,

An MRA is just an MRI with contrast dye

I'm unsure if starting the aspirin would have any effect on the APS testing, maybe someone who has been through that will come along.

I've not had a difference in temperature sensation, just in feeling i.e. numbness in my limbs which is related to my neuropathy.

CNSV is treated with Pred and depending on the particular situation either something like Imuran, Cellcept or Cytoxan added for a longer term solution. I wouldn't worry too much about it though because whilst headaches are one feature of it there are many others which usually come to light before experiencing TIA's from it (at least that was my experience and very typical according to my Neuro).

Good luck with your appt and let us know how you get along.

Hi Sushi,

Have your started on your meds yet for your anxiety? Good luck with the Neuro.

love
Lily

 

[teachmom67]

My MRA came back normal. I didn't want it to be a TIA, but I also didn't want no answers either. I am waiting for bloodwork to come back. They did a bunch of tests for iron and hemoglobin since mine were low. They also ran a couple of things looking at B12. I wish that my neurologist would have been familiar enough with APS to order the labs when I called to ask. I know she will do it eventually, but now she's on vacation for a couple more weeks and so now it is going to be almost a month before any tests would get run and results come back. I am tired and discouraged.

Amy

 

[Lily]

Hi Amy,

In one respect it's great your MRA was normal! However I do understand you want to get to the bottom of this so in that respect it means more testing and waiting. I wonder if your GP would run the Lupus anticoagulant and Anti-Cardiolipin tests? That way you would at least have that info sooner.

love
Lily