pulsating in the neck

[Salmonious]

Just a quick question. I would sometimes get this throbbing in my neck right where the arteries are or there about. It would go from the bottom of my neck right up to the back of my ears. I didn't get it very often and it didn't last long but I had a bad fall about 10 days ago and banged myself up. I hurt my elbow which swelled and bruised to the point that the skin almost hung off the bone it was so big. I also did some damage to my clavicle and my back but I didn't do anything about it. I thought I would just ride it out but the throbbing in my neck has increased 10 fold. I have to rub it a lot. I mentioned this to the doctor but it was ignored and has me concerned. Is this something that anyone else has experienced?

[Lure2]

Hi,

I have forgotten if you now are seeing a Specialist of autoimmun illnesses in Canada as we suggested a couple of months ago.

You then said that you were on nothing for Hughes Syndrome (like Aspirin or Warfarin ...)

You had a fall and should perhaps be seen by such a Doctor to talk about your symptoms of APS?

I have forgotten .... are you positive to the antibodies or/and have you neurological APS-symptoms?

Kerstin in Stockholm

[Salmonious in reply to Lure2]

I have been tested for LA and came out positive 3 X's. The letter I have from the last specialist said "She has had testing done, which shows that she does have a lupus anticoagulant or antiphospholipid antibody which would explain the elevated PTT potentially and perhaps the clot that she had, but would not explain the bleeding."

The bleeding was from a hernia surgery.

I am still looking for that specialist and am not looking as far away as Toronto, Ontario. I live about 4 - 5 hours away, so now I am waiting for some responses. I have got my fingers crossed.

[Lure2 in reply to Salmonious]

It is your life Salmonious! You decide about your own life.

Some members travel to an other country to find a Specialist who understands our illness.

We can not do more on this site than suggest you get your symptoms treated as they probably would ease when you are on some sort of thinning of your sticky blood.

With good wishes from Kerstin in Stockholm

[Salmonious in reply to Salmonious]

It is suppose to read "and am now looking"

[lupus-support1 Administrator]

If you are anxious, I would return to your doctor and explain. Only your doctor can give you piece of mind.

With good wishes,

Ros

[Salmonious in reply to lupus-support1]

I have gone to the doctor several times and had an ultra sound done on the neck arteries and they said it is fine. However they cannot or do not tell me why it hurts.

[suntap]

Hi

I have the same pains but kind of shrug it off as just being another quirk of this disease. It almost feels like a clot traveling up my neck. i get so many weird and wonderful pains and symptoms with this disease. Good luck.

[Salmonious in reply to suntap]

Yes! That is exactly what it feels like.

[Lure2]

I come back to my last answer to you above and my questions as to our illness.

Most of us with this illness need a Specialist and not until we find that Doctor we are in "limbo" (not sure that was the right word).

Kerstin

[HollyHeski Administrator]

I agree with Kerstin, you need to get to a specialist - last time we spoke you were getting a referal?

I get lots if weird pains, sometimes to the point I think maybe '999' time - but really dont want to go to hospital, as that beings further frustrations, I try to ignore.....scary but I hope I know when not to ignore.

You have had scans so be reasured but keep notes so when you do see a specialist you can discuss in full.

If they get worse and you are really worried then call 111 or 999 for urgent assistance.

[GinaD]

Do go see a doctor again, preferably one who is a recommended APLS doc — though the symptoms may or may not be APLS related. My late Mom had similar symptoms. As I helped her run down possibilities I learned that in her case, an incomplete but possible list for her included fluctuating blood pressure, irregular heart beat, dental or jaw issues, spinal cord injuries, or even an upper structural GI problem. You do need a doctor to sort this out! And since doc 1 was stumped, time for another consult!

( In Mom’s case she had a hietial hernia which produced those symptoms whenever she ate rice or other high starchy foods.)

[Salmonious]

Do Lupus support groups consider LA as part of their group even though it is not lupus? Every time I go to search up answers the net keeps taking me to the same groups so I was wondering if they will be able to help me find a specialist or is this just a mix up on the names?

I found the letter from the specialist that does not want to see me cause I missed an appointment and in it he says "This lady has divergent things going on as potential explanations for her high PTT. She has had clotting and bleeding and has lupus anticoagulant.......I will also investigate her for bleeding and for other causes of high PTT".

So what I am gathering from this is I should not have been able to form hematomas from LA? Is that correct? When I had my significant hernia surgery the surgeon said he had a tube inserted to watch for bleeding during surgery but he said it was dry so there was no problem. However, with in hours I had two very large hemtomas in my belly and was told that was from bleeding. He was very surprised. I am just trying to figure out how these are related to this disease.

Thanks

[Lure2 in reply to Salmonious]

I agree with Gina,

It is time for a Specialist of autoimmun illnesses who has had patients like you before and who knows how to treat you. Only the best one!

Very important you find him or she now and that you will trust that Specialist.

Kerstin