ME and potential stroke or TIA currently in hospital

[Sallyagerharris]

I’m currently in hospital awaiting results of MRI.

I came in 48 hours ago after 18 hours of not being able to talk at all apart from dreadful slurring and not being able to form words with jaw or brain. Lots of pain, bad breathlessness, tightness in chest, numbness, tingling, weakness.

admitted by ambulance and brain scan ... loads tests last night and today ... initial report not major stroke so hurray. Waiting for full MRI report in morning.

To me seems certain not ME as so so extreme difficulty in talking and hurting head, jaw and breathlessness but this type of brain not talking unique. Other instances of talking for seconds or minutes not going into 18 hours ...

It maybe a TIA ... I’m weak on lhs ... But wondering if anyone else

I’ve severe ME fibro PoTS, .. use powerchair out of house ... sick since 2006, not working at all since 2015 ... bed a day a week, 1.5 hrs of ok just energy, but housebound, socially inactive ... not able to socialise ... loads of sensory overload etc.

Just hoping ... or not ... for similar experiences. Thanks you. I’m in the UK and no coronavirus!!

 

[ljimbo423]

@Sallyagerharris -

I don't have any experience with the symptoms you have. It must be pretty scary rate now. I just want to say I hope it's just something minor.

 

[Mary]

@Sallyagerharris - I'm so sorry to hear all this! I agree with @ljimbo423 , that must be quite scary. I hope you get some information soon! Keep us posted --

 

[andyguitar]

Hello @Sallyagerharris the fact you have not got worse is a good sign and you have'nt said anything about paralysis effecting any part of you- also a good sign. Just a case of wait and see what the scan shows. TIA is a possibility and these usually resolve themselves after a few days. I wish you well, and let us all know how you are getting on.

 

[Sallyagerharris]

Left hand half of body numb, weak with facial muscles on lhs droop and mouth coordination issues ... but improving after initial onslaught of 18 hours ... then about another 12-24 ongoing but much much better. It’s the ME cognitive stuff, weakness, numbness that made me question myself. A “normal” person would have been rushed straight to hospital but our symptoms can so overlap although in retrospect easier to see differences ... if in fact stroke / tia. Exhausting being in noisy warm hospital filled with light and people!! But the attention tests and procedures extremely good and feel lucky to be under the NHS for this. I don’t expect total knowledge of ME as this this evolving still .... little by little

 

[andyguitar]

Left hand half of body numb, weak with facial muscles on lhs droop and mouth coordination issues ... but improving after initial onslaught of 18 hours ... then about another 12-24 ongoing but much much better.

Ah, this sounds pretty positive to me Sally. I've known a few people over the years who have had a stroke or TIA and the key thing is if there is some improvement in the first couple of days. If there is then the outlook is good. Like you say the ME symptoms overlap which probably make what you have suffered look worse than it is. Keep the faith!!

 

[lenora]

I sent you a long reply @sally, but don't know what happened to it. I suffered something similar in both January and April...memory's still not right but I read a lot and I'm taking all of it in. Serious books, but I just can't think of words within a second like I used to. Working back towards that. Get plenty of sleep...that's best for your body and will help it cure itself. I wish you well, Sally. Yours Lenora.

 

[xebex]

Sound like a TIA, sorry you are having to go through this it is very scary.

My mum had a really similar experience to you, it happened 3 times and she was rushed to hospital and thrombolysed three times because they were so certain it was a stroke, we were all very worreid for her. She spent 18 months being seen by various neurologists, and they came to the conclusion it was a hemiplegic migraine but without pain. The neurologists still weren't certain but epilepsy and stroke were ruled out so that is what they finally diagnosed. She had a lot of improvement with magnesium and aspirin though i don't think she takes aspirin anymore, but it was still happening albiet much milder, then she finally realized that it was being triggered by her thyroid medication, so she reduced the dose and that also made a huge difference, she is doing a lot better now.

 

[lenora]

Hi How are you doing today? May I advise you to not worry as much as possible and, like I said before, try to sleep as much as you can. How was your night? We have something called Hospitalettes now, and you're placed in a teensy private room and once the door closes, it feels like prison. As you know, hospitals are about the last place one would go to have a decent night's sleep. Between drugs and people coming in and out, one doesn't get much rest. Try very hard with all your therapies...they won't be easy, but will help in the end. They're what will determine what you can/can't do and practice them frequently. Don't be downhearted, as you'll gained skills again. Best of luck. Yours, Lenora.

 

[Sallyagerharris]

Hurray I am back home. My lhs is recovering with speech coming and going with heavy or light slurring. I have an MRI which is showing no stroke ... thank goodness ... but cerebellar white matter flair ... waiting to see a neurologist that ive been put under as the hospital did not have the final final report .. however i have alot of other stuff going on for instance my normally low blood pressure soared up, fatty liver thats not working well ... and other stuff .... its taking a few days as ive alot of information to work through but have had some rehab with physio and occ health ... so other stuff to read etc. i was already eating heathily 90% of the time but am going ultra ultra healthy 100% for now ... i definitely needed a quiet room which i didnt demand or get but will ask very nicely next time ... just feeling bit overwhelmed ... but super to be home ... I appreciate your comments which are helpful ... TIA but going to read up on heiplegic migraine as well ... a huge thank you to all xx

 

[xebex]

so glad you are home! wishing you a speedy recovery and some answers!

 

[andyguitar]

. but cerebellar white matter flair ...

This is associated with migraine. So it might not be TIA. But the symptoms and their duration dont really look like migraine.

 

[Sallyagerharris]

Sorry I’ve been a wee bit absent ... So at the Grand age of 55 I have bad ME and now have had a stroke. Originally I was told I hadn’t had a stroke but now the final report from the MRI says I have had a stroke. This week I had the follow up consultation to my MRI with the neurologist. I have multiple hyperintensities / lesions on the brain and small vessel disease of the brain and am at high risk of a further stroke.

So yet more statins which I started three weeks ago but they are upping the dose plus a new blood thinning medication, blood pressure medication although it’s low most of the time but spiked for the stroke ...

As I now at this minute have ME brain inflammation feeling I am currently scared .... Now looking at whether my half trained assistance dog can be trained on stroke alert and to get help if a stroke occurs if we are out on a power-chair walk. Luckily if she is off the lead Melba comes back all the time to check on me and once stood over me barking when I’d fallen out of the chair. So also looking at medical alert bracelets, a tracker for me and goodness knows what else.

The neurologist did say the amount of small vessel disease is bad and severe for my age ... I told her that I don’t drink or smoke, eat small amounts of highly nutritious food 98% of the time and hence am 9 stone at 5’5” and am always hungry but keep my weight down ... She asked me to walk further ... I said I couldn’t cos of ME ... hence is use a powerchair to stop ME getting worse ... could I use a stationary bike ... no I have severe ME ...

I’ve been angry at life over past 72 hours since our discussion, stroppy, bolshy ... playing Dancing Queen by ABBA singing at the top of my voice which amused the dogs ... but I am scared ...

I’ve no idea what is doing the brain damage to the brain small blood vessels ... as inflammation as well as high cholesterol can both damage the brain.

But scared as I feel my brain pulsating with the ME brain feeling ... everyone I know who has had strokes died and ended up partially paralysed. My day when I had what was thought to be a tia but was a stroke I couldn’t talk for two days properly but gradually and rapidly improved.

Does ME brain inflammation make more lesions ..I have asked for a copy of this MRI and a research one done in Bristol in 2012 ... not sure if it still exists ... as this can also be a precursor to dementia.

Does anyone have any knowledge or experience in this area?

Thank you.

Sally

 

[ljimbo423]

Does anyone have any knowledge or experience in this area?

Hi Sally,

Sorry for all the anxiety and stress this is causing. I think it's very possible that low grade brain inflammation is causing a lot of your troubles.

ME/CFS researcher Jarred Younger thinks that low grade neuro-inflammation, possibly from immune activation in the body, is what causes ME/CFS.

Here is a list of supplements he has suggested to help with the brain inflammation. Of course it would be good to run anything you might want to take by your doctor first but here they are-

So I found (on health rising website) this is the list of herbs that Jarred Younger is looking at for potentially reducing neuro-inflammation. Have you tried any of them and did they help?

Cucurmin
Luteolin
Resveratol
Gastodia Elata
Obovotal
Inflexin
Pipera kadsura
Ganoderma lucidum
Berberine
Isodon japonicas
Epimedium brevicornum
Stephania tetranda
Stinging nettle
Fisetin
Pycnogenol
Boswellia
Kratom

Here is the link to the thread that I got this quote from.

 

[andyguitar]

I couldn’t talk for two days properly but gradually and rapidly improved.

This can only be seen as a positive outcome. Rapid improvement. A lot different to permanent disability.

 

[triffid113]

You said u don't get out, prior 2 TIA due to "sensory overload". These are trigger words 4 me. I experienced that at age 50. I could only get around by looking at my feet because the big world caused sensory overload. This only happened to me for about a week because I tried DHEA 50mg and for 15 minutes felt like I went through a funhouse mirror, then I came out the other side normal.

idk if this is what u meant by that term. idk what else might help if u don't want to try DHEA, but I can only say it's an adrensl assist and there are others, such as rhodiola. Even Hy Basil (tulsi) might help be ause it lowers cortisol, which raises DHEA. However you peak out in DHEA at age 30 so, depending on your age, tulsi might mot be enough?

I get frequent but much lighter TIAs because of genetic high blood pressure and winter dryness. I take supplements that thin blood, like Vitamin E (1gram). My dose is my dose. My allergies put my immune system through an olympic feat, so I take olympic level anti-oxidants. So I sometimes see more light through one eye than the other and sometimes feel/walk crooked. I drink more water then, take more anti-oxidant blood thinners. you can prolly google for a list of supplements that thin your blood. Well, maybe I"m mistaken, but I think that would help. Best wishes.

 

[triffid113]

btw, thete is someone here named johnmac who says this:
Completely eliminated my severe anxiety symptoms with three supplements!

 

[Zebra]

Hi @Sallyagerharris

First of all, I am so sorry for all that has happened to you and for all that you are going through.

I don't have expertise in this area, but I do have some relevant experience.

I am going to be super frank and say I do not believe ME/CFS can cause TIAs or strokes. I suspect you have a second illness at work here.

1) Has your neurologist worked you up for clotting disorders?

2) Has your neuro, or other healthcare providers, tested you for the many forms of autoimmune vasculitis? This group of disease is capable of causing damage to both small and large vessels, depending on the type of vasculitis.

If you haven't had such testing yet, I'd be happy to look over my medical records and send you a list of all the test names.

In the meantime, I will say that one MRI I had early on in my disease process showed stenosis in 2 major arteries consistent with vasculitis.

My two most recent brain MRI/MRAs show multiple T2 hyperintensities consistent with areas of inflammation or small blood vessel damage.

I was very scared when I read these MRI/MRA findings could be a precursor to diseases like dementia, so for me, the quest is to find out what is causing these changes (which are NOT normal for my age) and to see if there is any treatment available to prevent further damage.

These days I'm preoccupied with more emergent issues with my heart and lungs, but I would certainly carve out time to send you blood test info if you intend to ask your doctors to do further work up.

Please tell me your doctors are striving to get to the bottom of this!

I was recently hospitalized for a near total collapsed lung, and was positively stunned to be patched up and discharged 3 days later with zero information about why this happened to me. All to be tested and sorted out as an outpatient. Crazy!

My most heartfelt wishes for a full recovery!