Pins and Needles in my face... should I Be Worried???

[jennybee]

I have had increased migraines and headaches, a few really disturbing dizziness moments and the latest short period of pins ad needles down the left side of my face. Went to GP who took my blood pressure (all ok) and said I should just wait and see, he was not familiar with APS (no surprise there!) and just didnt seem to bothered by this. he said if it got worse to go to A&E but seemed to have no immediate concern. He said because im on warfarin it wont be a TIA because im anticoagulated. Im still new to anticoagulants so dont know myself. Has anyone else had this before???? dunno what next step is, should i be worried or get a second opinion.... advice please. X

[MaryF Administrator]

Hi there, you need to keep a close eye, I am not on wafarin or anything, I am aspirin twice a day only, having had fragmin so far just for pregancies, but that could change one day... however If I were you, I would be off for a check up. Beyond your GP do you have a specialist you can contact. Sometimes anticoagulants need to be fine tuned. Also others on here who are better than me regarding INR will ask you what your maintained target is.. as if your GP does not have APS specialist knowledge perhaps that needs some fine tuning. Look if it continues go and get some help... you can always show them some articles off the HSF website... I know others do. Keep in touch. Mary F x

[Stannington-lad]

Hi

I sympathise with what you are going through.

I get the same symptoms I get this down the left side of my face. Numbness, tingling sensation, I also get numbness in my left leg.

Some times it feels like a stroke but my GP says and the migraine trust says that it is my migraine that causes these symptoms. You will get used to it and learn to cope.

Keep well and take care

[pluto5 in reply to Stannington-lad]

To me it sounds like stroke symptoms,as I have had several. I get numbness right down my left leg and both feet,and also down my cheeks, but it is all disregarded by the medics. Do you also have swollen legs and feet?The symptoms you have are all stroke related to my mind.

Since my strokes, these are some of the conditions I am left with.

It is rather that you have to grin and bear it. The doctors don't seem to have any answers.

[daisy11]

Hello- when my INR is below 3, then i get pins and needles, have had it for about two days now, I am also giving myself Heparin as specialists said when falls below 3 then Heparin. To think I had been on Aspirin for many years and then Warfarin and its a nightmare having to fine tune it. My daughter is on Aspirin

Hope you feel better.

[Manofmendip]

Hi Jennybee

These sound very similar to my 'funny turns'. What are your dizzy episodes like? My 'funny turns' usually start by a sense that I am being suddenly pushed, or turned or the floor is bouncing, or even a wall appears to fall towards me. I then get dull headache, whistling in the ears, pins and needles in one or more of face, hands, arms, legs and feet. I can sometimes get a sense that my arms or face are being tickled by feathers or cobwebs.I started to get these in Feb 2010 after being on Warfarin and 75mg Aspirin since July 2002, with a target INR of 4.0. I have had many brain MRIs and, although there are a couple of lesions, there is no recent changes visible. Two neurologists have said that these attacks are 'atypical migraines' but Prof Hughes says they are 'vasobasiler TIAs' that are caused by blood sludging due to platelet clumping. These TIAs are not well understood by neurologists, it seems, as they tend to expect to see one clot, affecting one area of the brain and one part of the body, they cannot seem to get their heads round the concept of sludgy blood gumming up larger areas of the brain stem and vestibular systems in the ears and causing a multitude of symptoms. My second neurologist was very dismissive of APS and said it was an easy tag to hang things on and that forums like this one encouraged patients to help each other dream up new symptoms; needless to say I won't be seeing this idiot again.

Prof H has moved me from Warfarin to Fragmin (Low molecular weight Heparin) injections and the 75mg Aspirin and this has helped to a degree; I can now get perhaps periods of two weeks between attacks but then I can get several attacks per day for several days.

I would be interested to hear more about your attacks.

Where are you based, could you get to see Prof Hughes in the London Lupus Centre, his private clinic; he no longer consults in the NHS.

Best wishes.

Dave

[viv112]

Hi. I have to avoid sitting in draughts, driving with the car window open or walking in the wind because it can bring on these symptoms. Also muscle spasms in the jaw muscles from jaw grinding and clenching (temporomandibular Joint (TMJ) Syndrome ) can bring on migraines, headaches and nerve pains. Your dentist could help you with this.

[pluto5]

I don't get all the same symptoms, but I am constantly feeling woosy with a tendency to stumble. I get tremors in my head and body which make me a fumble fingers.I didn't realise that your symptoms were TIA's as I get plenty of those, which my consultant called 'funny turns' and doesn't have an answer. ON rare occasions I see things which are not there, and at times I feel as though my hand is grasping at something when it is not.

I too have found that many doctors do not know about APS. They ask me what it is?

I don't know if this is of any interest to you?

[janekins]

I have pins and needles in my face arms and legs. I was in hospital in April with these symptoms and complete loss of speech. The same thing happened two weeks ago but my weaknesses were on the right side as well as dizziness which caused me to fall one night in the hospital . Once again I was told I didn't have a stroke . Problem is because they don't know they are saying it's probably functional and I've got to see a neuro psychologist. I don't think it's functional and neither does my gp who has known me for 25 years. Still feeling so weak and pins and needles doesn't go away.

I'm so glad to read others have these symptoms so I can tell the neuro psychologist!!

Take care everyone

Jane

[Suzypawz]

Hi hun I too have this symptom especially if inr drops below 3 what is yours at the moment? I know they said mine was possible TIAs plus I get what I can only describe as an ice cube being dropped into my skull too?!! Hope your ok xx

[jetjetjet]

Hi Jen - i have the numbness and tingling symtoms the[ pins and needles]i used to get them with flares , till last august a wasp sting got me into all kinds of trouble -- the numbness and tingling haven't gone away since in my arms and hands, where i used to get them all over-- this was my symtom when in 2009 they found all my blot clots- i am seeing a new kinda Doc these doc's treat the symtoms more than the cause , as we know there is no treating the sourse. the new doc, she has some idea's that just might work -- it's new and i believe it's worth a try.. they are going to like numb the pain receptors as i understand it . i have never heard of any thing of this type before. and it could work for some and not others. i am willing -and with my wacky system, who knows -- the more i learn i will certainly pass along any thing i find out. this won't be started for at least 2 or 3 weeks at the earliest- i am looking forward to working with my new Doc.. i picked her out of all the other doc's there because of her exstensive vascular work -- and in her brief the callenges she takes in getting her patients results -- i think i have a winner here -- time will tell. i don't see her again till nov.30 th..-------------------------------------------- jet

[Leigha]

Hello JennyBee,

I get similar attacks and always have felt they were tia's, especially when the side of my mouth would go down. But my mouth is not always affected, what does happen is the headache with the numbness on my right side along with confusion.

My neurologist always said they were complicated migraines and I felt he was not giving them proper attention. Saw him last week and this time he actually looked at my last MRI rather than just reading the report. Also, I took in my latest APS blood work, the IGM antibody was 118 (with normal being 20 or less here in the States). He now has changed his tune completely and calls them tia's rather than migraines. So, I guess it does depend on the doctor, on the circumstances, and on being persistent.

I would look for a GP who is perhaps more familiar with APS, if possible. Here in the States it is not easy, nor is it easy to find an expert. I'm going out of state to one of the countries top hospitals as am dealing with cancer and yet this hospital does not have a department for APS! Oh, they offer something in their rheumatologist department, but not for primary.

You in Britain are so fortunate, I'm telling all my doctors how much more advanced you are than we are..... and making them listen! That's an aside, but had to insert.

Best of luck to you,

Leigha

[Calico]

Yes, My right ear, back of head get numb. I get dizzy spells, difficulty swallowing, stiff necks. All despite being on aspirin and arixtra. Still trying to get into john Hopkins in u.s. I too have been told migraines but methinks it is TIAs. Hang in there.

[Manofmendip]

Wow, so I'm not going mad then. lol Being told by two neurologists that it is atypical migraine didn't add up for me but Prof Hughes explaining it and saying that even one of the secretaries at St. Thomas' keeps Fragmin shots in her desk for when she gets one of these was an eye opener for me. Basically, Prof said that platelets have a negative charge on their surface membrane and this keeps them repelling each other but APS damages the membrane and they loose the charge so the clump together and this makes the blood sludgy and it clogs up the vasobasiler part of the brain and the inner ear and, hey presto, our 'funny turns'. He's moved me from Warfain to Fragmin, which has reduced the 'funny turns' but I still get clusters of them. I also take 75mg Aspirin too and he told me to take another one if I get a 'funny turn'; that sometimes helps.

Best wishes.

Dave

[jennybee]

I have got an appointment at St Thomas in december but with the haematologist, would she refer me to a neurologist????? My haematologist now at my local hospital had never heard of keeping my INR between 3-4 so they still have me anticoag to 2-3, I spoke to her about it going 3-4 but she wasnt keen and wanted to do research so seeing her on thurs and then hopefully she'll change it. My GP said that if im on warfarin I cant have a stroke/tia or clot... is this true???

[Hidden]

Hello

I think you should try see your specialist as it sounds like it may be the start of a hemipegic migraine. I suffer from these type of migraine and causes weakness down one side of my body including my mouth dropping and eyelid drooping. My arm and leg are also effected. I have had 2 strokes but that doesn't seem to be the reason according to my Dr - its just another symptom of 'vascular migraines" My INR is usually raised with clexane and I am admitted on IV steroids for 5 days. My advice is don't ignore it - rather be safe than sorry.

Good luck

Pene

PS I still have the odd TIA whilst on warfarin - seems if it drops just a bit its enough to cause a TIA so be careful : )

[jennybee]

Went to my local specialist today and so tired of not being listened to. Was told to wait til I see the specialist at st Thomas In december. She also said in a round about way not to read too much on the web as sometimes people read too much into things and automatically tag everyday aches and pains to Aps. She couldn't wait to get me out the room and was in there no longer than 10 minutes. She's not prepared to increase my Inr to 3-4..... hmm let's hope I get somewhere at st Thomas'! So so frustrated! Why won't these nhs doctors listen to me....

[Hidden]

I have the same

[Lure2 in reply to Hidden]

You have answered a 2 year old post now. Good, because you have got a lot of good and useful answers above from that time if the fact is of course that you have got APS.

Take care!

Kerstin in Stockholm