Why aren't my legs working properly?

[WendyWoo50]

At a TIA emergency appointment recently (thankfully I had not had a TIA) as part of the examination the doctor tested my reflexes. In my arms they were fine but he tried six times to get a response from my legs to no avail.

Eventually he got a weak response by asking me to hold my arms up and hold my hands clasping my fingers (sort of as if shaking hands with myself) then when he hit just under my knee with the reflex hammer, he asked me to pull my hands apart with resistance.

Recently it has felt like the message from my brain isn't getting to my feet and I have to concentrate on walking. BUT... The doctor was happy once he eventually got a response in both my legs. (Nothing showed on the brain MRI scan).

So I am wondering if anyone else has experienced this and if so do you know why? I'm wondering if it is APS (I did have a bad headache and felt dreadful at the time) . On the report to my GP he noted my reflexes as 'normal' - I do not understand as I ended up bruised because he hit the same place so many times on both legs! Hence there is no further interest!

What causes lack of leg reflexes, can it be linked to APS and why was the doctor not interested?? Thank-you 💋

[Yllek]

Exactly the same happened to me a few weeks ago. I was seeing a new rheumy and he couldn't find either of my leg reflexes and made me turn into a funny position and then he got a weak response. Nothing abnormal was recorded.

Not sure whether it just takes a few attempts with some people anyway regardless of whether they have APS or not.

[Wittycjt]

Me either... oh well

[MaryF Administrator]

I am fine most of the time, but if I have severe back ache, a flare in my lower spine, then I lose sensation in my feet! MaryF

[amy1808]

Get it often usually lower leg and unsteady on my feet . O the joys of APS

[WendyWoo50]

So is this no reflexes an APS thingie then? Or not? 💋

[designer16]

Prof. Hughes explains this disease as a small vessel disease. The blood is to thick to get through those tiny blood vessels that don't show up in Ct or MRI. Those tiny vessels supply the nerves among other things. This can effects the transmission of the signals. It could be the blood supply is not getting there. That's why the higher INR makes us feels better.

Designer16

[WendyWoo50 in reply to designer16]

Thank u that makes sense!! 💋

[allisonmschmitt]

This was a big issue with me that sent me to the doctor in 2012. It suddenly felt like I was walking with someone else's legs, or walking in molasses. I had to use a cane and had horrible imbalance issues. 3 years later I tested positive for LA six months apart and went on aspirin which helped until my body began getting used to it.

I saw a neuro who did nerve function tests/emg which showed significant lack of current from brain to nerves/nerve damage. I was also having horrible migraines and suspected TIAs (but with a clear brainscan).

He told me I was too young (very kind) to have a stroke that might disable me and put me on aggrenox. I have been significantly better, excepting a few flares.

So yes, when your legs go and you have APS there are two potential scenarios...a spinal infarction/block, or "sludge blood", which I believe someone spoke of regarding small vessels that do not get enough blood.

For me, it WAS APS related.

Why was the doctor not interested? I have found, sadly, too many can have little knowledge of what symptoms can go with APS...and even if they do know, if you're on meds...I guess they figure, "we're doing all we can". That seems to be the attitude I have gotten so far from everyone but my neurologist.

[Lure2 in reply to allisonmschmitt]

Hi,

Is your Specialist a Neurologist? I hope he or she understands that we have very thick blood that has to be properly and stable thinned.

Are you on Warfarin or only Aspirin?

Best wishes from Kerstin in Stockholm

[allisonmschmitt in reply to Lure2]

If you were responding to me, For now, yes, my specialist is my Neuro, and so far, he has been the most educated on APS. I believe he saved me from a pending stroke, he believes this also.

They will not put me on a thinner due to no "verified" event other than suspected TIAs. I take aggrenox, and antiplatelet which also contains aspirin and a vasodilator. I am going to find another rheumy as my old one who dx with LA no longer accepts my insurance. I did go to a new one, but it was not acceptable. I waited 2 hours to see him and he tested me days after I finished a medrol pack. Every one of my tests, even ones I normally test pos. for, came back neg. I wish I'd have thought to ask him before he did it, but after a 2 hour wait in horrible chairs, I was in terrible back and leg pain and was grateful he was going to test me. I will keep looking.

Kind regards,

Allison in Georgia

[Lure2 in reply to allisonmschmitt]

Hi allisonmscmitt,

If you tested negativ to the antibodies for HS/APS you still have HS/APS as you have tested twice positive to Lupus Anticoagulant. You were then on Aspirin and you say your Neurologist saved you from a stroke.

Might be, but look for a Doctor who knows autoimmun illnesses as a speciallity and who will let you start a trial of LMW Heparin. With your neurological symptoms you have had you may well need a bloodthinner.

We can have negative antibodies (sero-negative) for some time but we always have HS/APS for life.

Kerstin in Stockholm

[allisonmschmitt in reply to Lure2]

Kerstin, thanks. I know - and I can tell by my body that of course it hasn't gone away. The aggrenox is the best thing I've tried yet, but when I had a flare a month ago, I was slightly imbalanced again...the odd thing is, most of the doctors I've been to don't quite understand that the antibodies fluctuate, esp. with plaquenil and prednisone. I am looking for another rheumy. I will not go to a hematologist again, yet. My first experience was nothing short of insulting and humiliating and frankly, I take care of my dad with dementia, live in a rural area and can only fight one battle at a time. I'm just grateful after all this time, I'm as far as I am. Thank you for your response.

[Lure2 in reply to allisonmschmitt]

Hi allisonmschmitt,

You say that Prednison produce false negative antibodies.

Who told you that or where did you find that?

I also think you should be better anticoagulated as some of your symptoms may well be from HS/APS. Try to find a Rheumatologist this time who knows autoimmun illnesses and how to treat them.

Kerstin

[allisonmschmitt in reply to Lure2]

Kerstin,

You ask for the effects Prednisone can have on APS/LA antibodies - for the quick summary, first page, second column, 2 paragraph from end, before the chart.

Excerpt: " 4. LAC activity diminished in all patients, and was absent in patients 1 and 2 after 2 months of treatment. When prednisone was discontinued, LAC and ACL antibody levels returned to pretreatment values in all patients".

onlinelibrary.wiley.com/doi... Note the references after the article.

Prednisone can produce the same results in ANA and Lupus and a host of other diseases because that is the main purpose of the drug, it masks inflammation by backing down antibodies in the immune system. I am not a big fan of Prednisone and personally would not have taken it unless I had to; I was so ill with a respiratory issue (not infection) that I had to or I would have been in ER. It also turned out I was ill with proteins in my urine, most of which also cleared after the prednisone.

I tend to agree with you on the idea I would probably do better with an actual thinner, but to date, no doctor will put me on one until I have an event. My neuro tried his best by sending me to a hematologist and despite her refusal, put me on aggrenox. He sees me every three months. I am fairly sure he will be concerned about the blood pooling in my liver, as it is associated in one journal review with APS. Might this be enough to convince them? I do not know. I intend to print out several things to take to a new rheumy, one that has sense enough not to test immediately after a round of prednisone and hopefully one who can connect the dots of the tests I have in hand.

It is a frustrating journey many of us take...and what I am just floored at, is the adherence to the criteria above all else, and while I am sure it is a way to do no harm, the wait, in patients with a significant amount of evidence leading to APS, it almost begs harm come before treatment.

Thanks,

Allison

[Lure2 in reply to allisonmschmitt]

Hi again and thanks for that great job.

I know very little about these things so I am glad you could explain some of these difficult things.

Kerstin

[designer16 in reply to allisonmschmitt]

Well if you got a neurologist to care you are lucky. Prior to seeing Prof. Hughes 5 years ago I had so many doctors who had no time to figure out what was going on. 21 years ago I was diagnosed with APS/Hughes because a positive blood test. Then I tested negative. Doctors said my APS went away. I had problems with my right leg & back pain. I had a L4-L5 fusion with a graft which failed. The said they needed to redo the surgery which I wished I never did because they gave me hard pack cells which through my platelets off. Now I am in a wheelchair trying to get strong enough to walk. This is the first year after seeing Prof Hughes that the doctors are doing what he has suggested. I am on warfarin with a 3.5-4.5 INR. I just hope it is not to late for me. I know & I have been telling them it felt like someone left a tourniquet around my neck. My arms , my back & legs hurt. They feel so heavy. I am lucky I finally have 2 doctors that believe me & listen. I am telling you my story so you can avoid getting like me.

My weakness progressed as well as the disease progressed while doctors didn't believe me or Prof. Hughes. Believe me there was a lot of them.

Designer16

[WendyWoo50 in reply to designer16]

I'm so sorry to read ur story u have been through a terrible time. I hope that u get the help and support u need now.

I had a struggle but we now try to keep my INR between 4 & 4.5 and when I'm in that range I feel much better although still have pain in my legs.

Thank-you for taking the time to answer and I wish you all the best 💋

[allisonmschmitt in reply to designer16]

I am sorry you went through this. I have gone through 3 primary care physicians, 4 neurologists, a pulmonologist and 3 rheumatologists....the last one tested me directly after a prednisone pack and every single one of my tests came back *negative* and he said, "I don't know what is wrong with you." I asked if the prednisone would produce false negs, because some of my tests have been pos. over five times (and why they keep testing these is beyond me since online medical journals say twice is enough). He stuttered and said he did not know how much. The answer is "yes". Prednisone can produce false negatives by backing down antibodies and inflammation. So the entire battery of tests he gave me were worthless. The neurologist I saw was one who'd seen me for over a year with my father. Out of desperation, I saw him. He did an emg/nerve test and I have lasting damage. He is the one who prescribed the aggrenox antiplatelet. He referred me to a hematologist who told me "You don't look sick"....and you haven't had a confirmed event. I cannot treat you, we take care of very sick people here." I told her her behavior was unacceptable and she should be ashamed. She sent me a registered letter banning me from the entire facility because I calmly told her what I thought....so my road has not been smooth. I paid for, out of pocket, for a calcium cardiac score. I knew it would give me a pic of my entire chest. I have nodules on my lungs and scarring. A year later, a follow up scan shows I have more scarring, calcified thyroid nodules, one 17mm, one 8, additional nodules on the lung and blood pooling on my liver. I will never walk right again, but at least with the aggrenox, I no longer hit the walls when I do walk. That said, my perception of depth/height remains off. 6 weeks after my last scan, not one word from any doctor on why there is blood pooling in my liver and nothing about the thyroid nodules. So....while I am lucky to have my neuro, I am still fighting for other doctors to do their jobs. I am going to my gp and have him give me a ref. to an endocrinologist for my thyroid....and discuss the blood pooling in my liver. I am also going to another rheumatologist. It is devastating to have this and have to fight for care and I am terribly sorry for your struggle. All I can say is keep looking and don't give up until you find the ones that listen. Oh, I did have a neurosurgeon try to operate on my spine....I declined after researching that less than 30% get any relief and it often makes the situation worse. With APS, I wouldn't have surgery unless I must. I have spinal degeneration and mild stenosis in my lumbar and cervical area and a hemangioma in my thoracic? (brain not working well today).

[designer16 in reply to allisonmschmitt]

If you don't mind me asking, what country do you live in? I am fortunate to see Prof. Hughes every year in U.K. He has finally managed to get through to my cardiologist. I am doing warfarin & getting better. But that is also a challenge because I seem to not tolerate the USA warfarin. I suspect I am allergic to the fillers. If I am not able to get the U.K. Brand Teva I not sure what I can do.

Designer16

[allisonmschmitt in reply to designer16]

I live in the US. Georgia, outside of the north ga. mountains. I am glad (and slightly envious) you get to see Dr. Hughes. I think that is every American's (with APS) dream.

I am going to work with my GP by taking him articles by Dr. Hughes. A little at a time. My GP seems to be open and has been helpful.

Teva pharmaceuticals are available here, however, what I have found is it is very difficult to get a pharmacy to order from a particular supplier.

I use CVS pharmacy, and they have a broker (middle man) who gets them the 'best' deals in generics - I think this is pretty common for the larger chain pharmacies, so 6 months, you may get one supplier, and the next six months, another.

I was asking for an alternate supplier of Plaquenil, and they said it could not be done and gave me that reason.

That said, there may be another pharmacy that will get the supplier you need, esp. if your doctor orders it.

Best,

Allison

[designer16 in reply to allisonmschmitt]

It is very nice to meet you. I live in California. Yes I feel blessed to be able to see Professor Hughes. Like I said before I owe my life to Prof Hughes & the people on this website (especially Mary F). My health was going down hill quickly & no drs. Here in the US could figure it out. I think it was because my APS TEST were sero negative. As far as the meds. I am allergic to many medications here in the US. I need to get Warfarin from U.K.

Designer16

[allisonmschmitt in reply to designer16]

It's very nice to meet you too. I'm happy to be here myself. I get down sometimes because I expect doctors to at least be curious and most aren't. I also need new ideas/perspectives and opinions. I've read the comments for a while, but decided to jump in. Been a tough week with dad and I really am worried that all my organs seem to be under attack. I can't even imagine getting to meet Dr. Hughes. I'm sincerely glad you got to.

Allison

[falling2peices]

My arms gave no visible response during my evaluation for disability but ofcourse the examiner said nothing to me but she kept doing the test over n over

[WendyWoo50]

Ok silly question. Why is checking reflexes classed as an important diagnostic test if the doctors simply keep hitting us with their hammer and making us do strange contortions until they get a response - no matter how weak. Then satisfied they record the reflexes as fine and move on! Never mentioning it again. I just don't understand what's the point.

Analagy: your on your driving test/examination and are asked to reverse around a corner; you drive onto the path. The examiner asks you to practice the manover again and you do it again. You continue to repeat it until finally after six or seven attempts you do it without driving on the path, all be it a bit haphazardly. The examiner ticks the box and tells you to carry on. You pass your test!

Obviously something is wrong with your driving! Do you see what I'm saying? 💋