Legs giving out on me, Why?

[snorkle272]

Hello. I am new to this support group, but have been diagnosed with APAS for the past 12 years. I had 3 strokes, a bi-femoral bypass and graft for my legs, and a small stent put in for my upper superior mescenteric artery. Now I am starting to experience my legs just giving out on me for no reason that I can feel. Does anyone know what this is all about? Thank you for any help.

[MaryF Administrator]

Hello and welcome, firstly where are you located, and do you have a main Hughes Syndrome/APS consultant looking after you and advising your GP?

MaryF

[snorkle272 in reply to MaryF]

Hello Mary F. I am located in Ontario Canada. I do not have a main Hughes Syndrome/APS consultant Looking after me or advising my GP.

[MaryF Administrator in reply to snorkle272]

I enclose this, as there is a name in Canada on the list who you could contact apsaction.com/research MaryF

[SoulRebel-APS]

I can't say what its about but I can tell you I have the same problem. Just walkn along and out of nowhere u just fall because ur leg decided it was done walkn for a moment or so. I'm with u. I dont know y but it happens to me to.

[snorkle272 in reply to SoulRebel-APS]

Thank you for letting me know you experience the same thing I am going through. I know it can't be easy to discuss. It has been suggested that my falling and my swallowing difficulties are psychosomatic. As in conversion disorder or all in my head. And I don't have a specialist to tell me what can happen with this illness. I am hoping someone on here knows of a specialist in Ontario Canada. Good luck to you, SoulRebel APS.

[LesJames in reply to snorkle272]

I also have this problem. Also if I stumble and try to recover my legs feel like lead. It is only through chance that I have not hit the deck. My INR is being kept as near to 3.0 at the moment because I started to bleed into my muscle. I have an appointment to see a haematologist next week after 4 years of trying.

[Lure2 in reply to LesJames]

Hope he is a Specialist also!

When I have an INR at 3.0 I have to take a Fragmin-shot to not get a clot or more symptoms. Try to selftest and then you can test more often and have control of your blood.

Otherwise ask for a trial of LMW Heparin! That should perhaps suit you better.

Kerstin in Stockholm

[SoulRebel-APS in reply to snorkle272]

Anytime. By joining this site you can now connect with the true specialists, APS PATIENTS. But all we can do is advise and share u still need a good dr. Sorry I dont know of anyone n ur area. I can also relate to the swallowimg issues. Its not all the time but I will suddenly not be able to swallow like my muscles forget how but I manage. Usually by I have to wait a 30 seconds or so but i have to stop an concentrate trying to remember how. Its odd but so far I have gotten by. I also choke a lot usually on nothing. Lol. I hope u find a specialist soon. Good luck. Take care. This disease has so many symptoms that sometimes you start to doubt urself. But if u cone here u will probably find other people with the same problem! Sometimes all u need is confirmation that its reall and not just n ur head. If ur dr is saying it n ur head find a new Dr.!

[Lure2]

I also fell before my blood was propely thinned several years ago.

Have you had your blood thinned and with what anticoagulationdrug?

Kerstin in Stockholm

[snorkle272]

Hi. I am on warfarin. My dose is alternating 9 and ten mgs. I check my INR monthly or more often if necessary. My vascular surgeon and the blood specialists at McMaster university want my level to be between 2.3 - 2.6. I can find out by computer the same day and then start adjusting it, before my doctor even knows.

[MaryF Administrator in reply to snorkle272]

For a patient with Hughes Syndrome/APS the level normally needs to be set higher! often 3.5 or even higher! MaryF

[snorkle272]

I don't think I have ever had my blood thinned except for being put on a regimin of warfarin , or heparin during my surgeries. How do they thin your blood? Through transfusion or with medications? Transfusion would be very difficult for me - because I have another blood anomoly as well. I am A+ but I have a negative C factor antibody as well. Thank you Kerstin for any help.

[Lure2 in reply to snorkle272]

Where do you live?

As you have been diagnosed with APS 12 years ago you should now have at last an APS-Specialist!

It is a Rheumatological illness and a blood-disorder also. We usually need a Rheumatologist or a Hematologist for it with a SPECIAL COMPETENCE in autoimmun illnesses like SLE, APS and also Sjögrens. These three are "cousins".

The Neurologists do not "get" what APS is - too thick blood that has to be anticoagulated at a steady level all the time to avoid clots and DVTs and Strokes etc etc.

There are few of them (the Specialists) but you must get one as soon as possible.

Read also "Sticky Blood Explained" by Kay Thackray. Liked by many members here and she has APS herself and writes about the difference symptoms we have. Good book to understand our illness.

You are already on an anticoagulation drug that thinns the blood (Warfarin), but you must be on a much higher level than 2.3 - 2.6. That is quite too low INR!!!

I have an INR of 3.5 - 4.0 and at that number I have practically no symptoms.

Some of us also have LMW Heparin instead of Warfarin to thinn our blood.

I wonder if you have got Lupus Anticoagulant positive as one of the three antibodies they cheque for APS via a bloodtest. Try to get your antibodies tested again. Perhaps they are negative and you were diagnosed by symptoms only 12 years ago. Some here are negative. Try to get your old papers from 12 years ago.

Stay here please and get that Doctor who can help you!

Kerstin in Stockholm

[snorkle272 in reply to Lure2]

Thank you for responding Kerstin. I was seeing a hemotologist up until 2 years ago. Every time I saw him, he would test my blood for Aps, and find the LAC. They were always present as well as 2 antibodies that shouldn't be able to exist in one body at the same time. Plus I have A-positive blood, but I have a negative C factor as well. But then Dr. Arnold left the McMaster hematology unit and the head of the unit has no interest in continuing to have me tested. I don't remember what the other 2 antibodies are. So I will request that my GP get copies of the test results, and for me to be re-tested. I have found the name of a hematologist who wrote a paper on APLS and she is just an hour away. So I am also going to ask for a referral to her. And I will do some research on increasing my INR level. Thanks again. By the way I am in Ontario Canada.

[Lure2 in reply to snorkle272]

I am so glad that things seem to go in your direction. If she does not know enough about APS look for another Specialist of APS. That is my advise.

Good Luck from Kerstin

[GinaD in reply to snorkle272]

When you take heparin or warfarin or even aspirin, we call it blood " thinning" because the medication slows down the bloods coagulation cascade. Which has the effect of making your blood less likely to clot, or, "thinner." A lot of medical terminology can be very confusing to one looking at it from the outside.

In the case of APLS patients, an immune reaction to a portion of that coagulation cascade causes our blood to clot, and stay clotted, at inappropriate times and places. In other words are blood behaves as though it were " too thick."

By slowing the inappropriate clotting reactions, our blood is more likely to behave like normal blood. The result is that when a normal person has an INR of one it means his blood is behaving normally. When a normal person has an INR of two it means his blood is twice as "thin," and he is more likely to bleed a lot.

But this correlation doesn't make any sense for an APLS patient. For some of us, an INR of 2 means are blood it's behaving normally, while others may need an INR of three or even higher.

One reason why many of us urge our fellow patients to consult with a specialist experienced in treating APLS is that experienced doctors are more likely to understand that a higher INR for an APLS patient does not come with the same risk as a high INR in a normal patient. And that often, APLS patients need a very high INR, or indeed coagulation with a different medication. Experienced doctors are more likely to listen to patients and try a variety of drugs to find a patients perfect match.

[snorkle272 in reply to GinaD]

Thanks Gena for responding to my questions. My family DR. knows very little about APS, and the hematologist I was seeing said my case was very complicated because of the Aps and having 2 other antibodies that shouldn't be able to exist in one person at the same time. Plus I have a negative antibody in my positive blood. He has since left the province and yes I need a new hematologist.

[SoulRebel-APS]

I am glad u are seeing a hemotoligist. Be sure to write down ur questions and if possible take as much lab results as u can. The more they know about ur blood work the better. Good luck I hope it all goes well. Take care.

PS: I have seemed to learn to fall inslow motion an will use anything I can reach to slow my fall and protect my head because I REALLY hate going to the ER! My family have all learned to bw ready for me to grab them and suddenly support my weight or stay still and rigid so I can use them to slow or stop my fall. Its now almost an instinct for them. They feel me they try to catch me or at least provide me to use them and slide down to the floor. Once I almost took my husbands pants down with me. Luckily we were at home and that was a rare fall because BOTH legs just said screw u ar the same time, its usually one or the other.

[snorkle272 in reply to SoulRebel-APS]

Thank you again, SoulRebel-APS. This site and the answered questions are extremely helpful. I feel much better knowing that this is not all in my head. Even my psychologist was beginning to doubt some of my symptoms - falling and swallowing problems. The first time I fell I was in the shower. I couldn't stop the fall but was able to make sure I didn't hit my head. I do not currently have a hematologist I am working with but hope to get a referral to one nearby. (She wrote a very interesting paper on APS, and I really need the help. If I do get the appointment It will probably be 6 months to a year before I see her.) We have since installed grab bars for me . I use them every time I shower, since I often feel off balanced and have brain fog so often. This site has been a real blessing for me. I am so glad I found it. I hope you are able to start falling less. Thank you for sharing.

[snorkle272]

Thanks APsnotFab. You have been very helpful with your suggestions. I recently read of hematologist close to me that wrote a paper on APS. I will be asking for a referral to see her. I think you are absolutely right about needing to have my INR in a higher range. I am pretty sure that I can get my GP to give me a trial at the higher range. If it alleviates some of the things I am going through right now - continuous brain fog, falling, shaking and swallowing issues, then the higher level would be what I need before things get worse. Last year it was vertigo and sudden hearing loss. I don`t want to lose anything more.

[snorkle272]

I learned from my chiropractor that my lower vertebrae were crushed together from having broken my tail bone twice. A few simple adjustments, and easy stretches and I am no longer falling. My lower legs still feel very heavy, especially when I start to climb the stairs.

[Lure2]

Hi again,

We answered on your question 2 years ago about your legs giving out of you and you fell.

Now you say that your chiropractor have found the answer with your leg.

I wonder if you now also have found a Specialist and also have a higher INR with your Warfarin (over an INR of 3.5) as I and also others know that "fallling" is a symptom of this illness. The blood must be properly thinned. I know you live in Ontario in Canada and I wonder if you have found that Specialist and that you are on a higher range of Warfarin. Could that also be the reason why you do not fall anymore?

Best wishes to you from Kerstin in Stockholm