Monday morning tingling in limbs which isn't to out of the ordinary because the start of every morning is rough for the first 3 hours and then I know how my day is going to go . Monday the tingling got worse instead of better .Mid day i had pins and needles . Tuesday morning was still bad so called DR's office who sent me to ER. arrived at ER at 12 noon and at 1;30 blood for PT / INR . 5;20 I was seen by Dr who asked me what he should do INR cam back at 3.9 , down from a 5.5 on Monday . So with all this going on in limbs I was glad my INR was up because I am a bad clotter . They weren't to excited about x-rays so they did do an Ultrasound on both legs groin to calf. . These showed a old clot in left leg behind knee but it wasn't a fresh clot so at 9;00 pm i was discharged with instructions to involve my Hematologist and also follow up with my PCP. Now just recently I lost my Nurse Shannon whom has been with me for ten years then a week later the rest of my entire team at my Dr's office ?? so I am home being quiet and still till tomorrows appointment with my PCP who is a new young DR that doesn't know much about the APS . he was learning from Shannon but now that isn't happening .Hematology is waiting for the report from PCP . Darn it doesn't rain but it pours . Needed to vent here before I explode. of all times for this to happen and it hasn't happened since 1/25/19 so it has been 3 years and now same problem . no reason for this unless it is nerves and I am a very hyperactive person for an old man . So sitting here trying NOT to dwell to much on it . I wish they would do a x-ray of lungs as this is the feeling I had back in 2009 when this all started and i had PE both lungs and 3 DVT'S . so far only the legs checked. Also my PCP is a young resident doctor that was just starting to learn from Shannon and I BUT losing the entire team isn't helping any . SO any advise other than jumping off a 2 foot high bridge { it will have to be a very very low bridge as I don't want to get hurt ?? HA } any others have these pins and needles return evry few years and if so what was found to be the cause if not clotting . Going o keep my INR up as high as I can get away with till this is resolved . my normal range is 2.5 to 3.5 so I was 3.9 yesterday so I don't want to come down any lower . Any idea's out there ???? Jet .
Pins and needles: Monday morning... - Hughes Syndrome A...
Pins and needles
That sounds really uncomfortable, and you have to follow your hunch if you have had those sensations before, for good measure also get your B12 and Folate checked just in case low B12 (Pernicious Anaemia) has joined as a side show as that used to give me dire pins and needles before it was treated. MaryF
I will ask my PCP to run them -I think I had asked him before to have my B-12 checked and my Creatinine was .99 last time checked was 4-12-21 and that was 1.46 yesterday of all checked that was the only one that was of. See here when you go to the ER they won't give us a readout of test results they send them to your Dr. !! I was liveried about that and they heard about it , I was not a happy camper . These are our results and they should be made available when you are discharged so that you have the ability to compare with past values . I wasn't pleased at all having to wait till you see your DR. .This is just plain wrong. thanks Mary for the Info I see him tomorrow at 3 PM and I do my PT/INR in morning .
Oh … the never ending merry go round.
Tingling in limbs can be from dysautonomia.
POTS can also cause this . Have you had a tilt table test? ( do you have a neurologist , or even better, an cardiologist with specialist training in electrophysiology?
APS patients are a bit prone to having POTS . Dr Hughes told me it’s because the blood is too thick and the tiny vessels that enervate the nerves for the autonomic nervous system can become damaged.
It’s also possible you might have other autoimmune diseases that like to travel with APS that have not been picked up on, that also tend to have POTS as a hallmark. Things like Sjögren’s, Ehlers Danlos..
I would have your new “team” check your thyroid as well- the full shebang. Also make sure you are not anemic, and that your ferritin in not low. ( anything below 50 is low.)
And the obvious , make sure minerals and vitamins are topped up correctly.
And to state the super obvious… if your lungs do not feel ok-or you feel faint or nauseated- call for help urgently.
Great advice! MaryF
Hi my buddy, troubles in the jungles here. I pray you will come out of this one, as you are a super man.... Now, who else have you been seeing for years with the APS, aside the new resident Doctor, I know you have a good team of specialists. I would contact one of your other specialists, explain what you are experiencing, all your symptoms, and tell them the new resident is not very versed in APS. So, no sudden moving, stay safe, for clotting, and keep posting, and try to relax, and get some rest, legs up my dear buddy. I, am praying for you, and many people here, are supporting you very well, we all have your back. If you feel uncomfortable in any way, go call for help right away, do not hesitate, please, you know your body best. I wish I could be of more help , but APS is not my best topic. I send all my healing love, and blessings, with Storm strong licks and peace. Let us know how you are doing, stay strong, and safe, Love, Thestormy sunshine Xxxxxx
Thanks All i will HAVE THE REPORTS TOMORROW WHEN I GET TO SEE MY PCP HE IS GOING TO HAVE TO RELY ON ME MORE SO NOW . HE USE TO GET NERVOUS WHEN SHANNON WASN'T AROUND SO I KNOW HE WILL GET ME ANYTHING I ASK FOR WE CAN'T FOR THE THYROID DO THE P S A IS IT WE HAVE TO DO T 3 AND 4 . WITH MY MEMORY FADING I CAN'T REMEMBER LOTS OF THINGS I USE TO . DON'T GET OLD GUYS IT ISN'T FUN HA HA I WILL NOTE ALL THE INFO GIVEN HERE but I WILL NEED TO SEE WHAT THE er RAN WHEN THEY DID MY BLOOD - IT WAS A BIG VIAL NOT A BLUE TOP AND THAT OLD GUY THAT DREW MY BLOOD MADE A MESS OF MY ARM -AS YOU KNOW I GET INR TESTED TWICE A WEEK FOR LIFE OR AS LONG AS I AM ON WARFARIN SULFATE . THEY KEEP TELLING MY I AM ON COUMADIN OF WHICH I AM NOT THAT IS A BRAND NAME I AM ON JANTOVEN BUT IT'S WARFARIN SULFATE AND MY HEMO SAID BECAUSE OF MY TRIPLE STATUS IT IS THE ONLY THING STRONG ENOUGH AND THE DRAW BACK IS THE INR TWICE A WEEK BUT IF CAN KEEP ME SAFE THAN ?? NOW AFTER PCP HAS DONE HIS THING PEGGY SUE AT HEMO'S OFFICE WILL TAKE IT FROM THERE I HOPE SHE IS A HARD ONE TO FIGURE SOME TIMES IT TOOK ME 2 1/2 YEARS TO GET HER TO AGREE TO MY 2.5 TO 3.5 RANGE FOR MY INR ?? I THINK I MIGHT OF MENTIONED THAT SOME WHERE ???? 3 TOMORROW IS THE BEWITCHING HOUR . WILL ENLIGHTEN ALL THEN IF I CAN KEEP MY COOL WITH THEM I MIGHT OF HURT THE NURSES FEELINGS THERE TRYING TO KEEP SHANNON IN THE LOOP EVEN THOUGH SHE WENT TO MAIN HOSPITAL AND ISN'T IN THAT OFFICE ANYMORE SHE WANTED ME TO GET OUT OF THERE BECAUSE SHE WAS AFRAID THAT NO ONE THERE NOW HAS ANY EXPERIENCE WITH ME AND OR THE APS. I HAVE BABBLED ENOUGH , NIGHT ALL YOU LOVELY PEOPLE .. BBN
Yes, keep your cool, make your own notes and follow your instincts, you do know best.I can't add any more to what has already been said, do let us know?
And never worry about ranting, we all need each other at times xx
Jet jet jet, I’m having pins and needles (tingling) on weekly or daily basis for the past 18 months. Assume it is a circulation issue or related to a light version of Raynauds .
Did an MRI today { Sat 8-7-21 } I have the neck C spine area by skull . They are concentrating on that area right now , DC Should be calling me as he is in Hosp. working today , hopefully I won't have to wait till Monday . I had horrible pain in left shoulder all during the 40 min. I was in machine. The tech's wanted me to go to ER again after I got out of the test. i know they won't do anything till hemo gets back to my PCP. I had hopes PCP would be calling me so That i can try to get him to move forward BUT ???
You will certainly be in my prayers this afternoon. If you need a verbal rant audience, feel free to call,
WELL My blood lab the Creatinine came back to 104 so that was good and because of the tests to check lungs for clots That is hard on liver and kidneys and if the creatinine was hi it could cause damage to . he knew i have problems with pressure up on the top of my spine where the Occipital where C spine enters the base of skull. I get TPI from Pain Care and then Therapy from Coppola Cranial Therapies which is a dry needling and the message to get these muscles to stay in the relaxed state . the pressure can make so i can't even tip my head back it makes pressure worse . So PCP is contacting Hematology before going forward with any pictures of lungs are done . Tomorrow at 7 AM I go for a MRI on the c spine to make sure this isn't the cause also . .in the mean time we are keeping my INR at high end of range 4.0 is the goal . this can be difficult with my roller Coaster INR'S But we will see what hematology has to say ?? because my INR is 3.9 they say well clot is unlikely What these Doc's have got to understand is that we can clot no matter where the INR is I mean not common but it does happen So this is where i am . he doesn't seem to want to do the lungs without hematology .
MRI This morning on C Spine - i was in horrible pain while in machine 45 min. I could of pinched a nerve or it's the problem area where the occipital muscles are . I can't go back to Coppola Cranial Therapy till one of my Doc's sends a letter of life long problem not able to be fixed so???? so far no reply to my calls as to was it done last week . it should be Pain care Care Steve that writes it because he was the referral Doc. So Dr Stevie said she would have to have Him { Dr Steve do it DR Steve is Pain care and DR Stevie is Coppola . confusing isn't it . left shoulder is just now starting to relax and i have been out of the MRI machine for about an Hour now . I feel like the Straw man from The Wizard of OZ !! parts of me here parts of me over there and my stuffing is falling out !!!!
Has anyone experienced pain along with pins and needles sensation?
Just diagnosed APS, Already have MS, Need support and advice please
Pins and Needles in my face... should I Be Worried???
