waking up weak not moving

[grenise]

hello,

i have been on here before but i have a symptom that scares me. often if i am napping or fall asleep in the car while my husband does an errand/ i wake up and then i notice my right hand and arm feel immobile. and my language isnt gone but i struggle. my husband used to say he didnt notice but now says he does. i recover in a matter of minutes, but i wanted to ask if i should worry-

also lately my arms will feel very heavy - they still work but feel weighed down. this feeling comes and goes. i do not have any cardiac issues, just had ECHO two weeks ago and was good, as always.

thank you for reading this!

[Lure2]

Hi,

You wrote here three months ago and talked about digestive problems. You told us that you should see a new Doctor very soon. We suggested you should look for a knowledable Specialist of autoimmun illnesses.

What you talk of today sounds like neurological symptoms from your APS.

I wonder if you take only baby-Aspirin or if the new Dr put you on any anticoagulation?

Please see a Specialist if you do not have one or tell your Specialist about these symptoms you have.

Kerstin

[grenise in reply to Lure2]

thank you- i see my neuro next week. i have basically been put on hold. my cardio has suggested aspirin 2x week. but i did not relay this symptom to her as it hadnt happened yet.

i wondered if a tia presented like this or if it is neruropayhy. they will blame MS on this but it isnt an MS symptom that i get and it is transient. i have yet to find a dr, that is concerned about my neuro symptoms- chronic vertigo/light headed, headaches and vision.

i will keep trying- have been to all major hosp near me in nyc, but since i havent clotted/stroked they are not concerned. i wondered if tia can be seen in ER?

[Lure2 in reply to grenise]

You should see a Specialist of autoimmun illnesses and I think you have got micro-embolies of APS like many of us (me included) have had during the years.

Some neurologists are not good with this illness to understand that we have too sticky blood as a symptom for our TIAs or micro-clots and APS can often be misdiagnosed as MS.

Microemboli or microclots are often not seen on a Scan but they do harm all the same in the long run. This is a tricky illness that few Doctors understand.

I have today two leaking heartvalves and pulmonary hypertension. I had very high bloodpressure before I was properly anticoagulated. My Warfarin have saved me so far so as long as I keep in range I feel ok. INR around 4.0 and selftest.

A TIA could present like in your case (read about APS and learn as much as you can).

The first drug we get is 75 - 100 mg of Baby-Aspirin and when that is not enough the Specialist may start a trial of LMW Heparin to see if the symptoms disappear.

Good Luck!

Kerstin in STockholm

[grenise in reply to Lure2]

i have what i hope is an easy question. is there a test which diagnoses micro emboli? i, too, think that is what i am experiencing. i do not see a diagnostic test for that online. how did they find yours?

thank you for your helpful answers!

[Lure2 in reply to grenise]

I am not a Doctor but I have learnt that emboli (a clot moving) and microclots are difficult to see. I have had this illness for 16 years now and the different Doctors have not found any clots on me. They have been found by the harm they have done to my body.

I am triple-positive with persistant high titres.

It is not an easy question you have. Perhaps someone can give you better info how to see the micro-clots.

I was diagnosed by symptoms and antibodies. After 10 years i started Warfarin but I wish I had started it earlier but I did not like the "ratpoison" Warfarin. How wrong I was.

[grenise in reply to Lure2]

i keep answering you and asking you more questions. can i ask more? i am newly diagnosed and have high markers on only two tests. but have had these symptoms for at least 10 yrs, probly started 15 yrs ago. did you never clot? my husband wants to take me to ANY dr who will listen. you said not being treated caused damage. may i ask what?

thank you for your patience.

christine

[MaryF Administrator in reply to grenise]

It is important that you see a doctor who fully understands this disease, some UK specialists are over on the right hand side of this forum under pinned posts, and we have more here on the charity website, global ones: ghic.world/ Also be sure to check your vitamin D, B12, Iron and also your Thyroid. You should also be checked out for POTS dysautonomiainternational.o...

MaryF

[grenise in reply to MaryF]

hi

my thyroid always checks put as does my B12 and vit D and iron. im in nyc and having a devil of a time getting a dr- been to HSS, NYU, Montefiore - did find a dr with HSS named Dr. Erkan. I am going to call him next as he just wrote a paper on the need for more drs to realize APS and symptoms. i saw another dr in his practice, but i guess i will step on toes.

[Lure2 in reply to grenise]

I clotted all the time before I was anticoagulated. But at that time they did not find anything on me and as I also was triple-positive with very high titres I got Specialists who understood this curious illness that so many Doctors do not understand has to do with too thick blood! We must thin our blood!

Are you better on baby-Aspirin? Do you have high bloodpressure? You also talk of of ECOs for your heart. Why is that taken? Even if we have this illness we are very different with symptoms etc.

But as Mary has also told you you should look for a Specialist of autoimmun illnesses who understands what you talk of. Check what she has listed here.

[grenise in reply to Lure2]

i was diagnosed with MS years ago. i have always had good blood pressure but i do get irregular heartbeats- so i get an echo once a year. and my MS is very manageable, i dont even take meds. a lot of my symptoms they always say i guess that is MS, and i just power on. and the vertigo my drs all say it’s NOT ms, but they tested for everything they could but never had an answer for it. now that my titres are all positive they dont blame the “dizzy” on that they just only look for a clot or stroke and since i dont have either...

i am severely underweight but they dont blame anything for that either.

i havent taken aspirin yet, i know i should. i guess since i have been on this site i only get advice from people here. i am SO used to drs jumping in to want to handle my stuff i have never had them NOT worry over me. and since i have never even had a clot and every d-dimer blood test (i get those a lot) is negative they say im not a risk. drs just tell me that except for these titres that i’ve got zero risk and that if they hadnt tested me, they never wouldve known. that i shouldnt worry. only 1 dr said maybe aspirin when i asked if i DID clot would he be comfortable with that.

im going to see the next dr asap, though.

[Lure2 in reply to grenise]

As we have said; read about APS on ghic.world/ and learn about our illness.

You must get a Specialist who understands this illness (!) and why not test 75-100 mg of baby-Aspirin and see if you feel better. Perhaps it is now (you have had it such a long time already) time to get properly anticoagulated as Aspirin is not an anticoagulation drug.

As I have told you we get sometimes very tiny emboli or clots and the only way to know if they excist is sometimes (if they do not show up on any Scan) to thin the blood and notice we feel so much better when the INR (if we take Warfarin which is for most of us the best drug) high enough to properly thin the blod.

Hope you understand that this time you must look for and see a Doctor who is knowledable of our illness!!!!

Kerstin

[GinaD]

I am no doctor, but it has happened before that APS patients are misdiagnosed with MS. Also, there is a sleep disorder which results in slurry words and movement problems on first waking-.

[grenise in reply to GinaD]

yes narcolepsy i think it is. and diagnosed with MS in 1996 and i definitely have lesions on my brain and just one on spine. i think i probably do have MS- i should play lotto cuz i’m so lucky😉 i dont think APS gives lesions so i guess i would have both...