Hi, I have had what I would call a flare of my condition, where my right foot is floppy and slaps the floor when I walk. It gets worse when I have walked a bit far and am tired. Also my right shoulder has become weakened and painful, to such an extent that I have difficulty holding a kettle to make tea, or put my dressing gown on it's hook behind the door. I have seen my GP who arranged a CT. Several weeks have now passed and both symptoms have not gone away. The CT showed no sign of a stroke or tumour, nothing nasty were the words to describe it. There was some white matter, which has been attributed to aging or possibly TIA's. With my INR at 3.5-4.0 I find the thought of TIA's almost impossible. Is there or has anybody heard of such a thing. One other thing, My GP has referred me to the Mental Health Team who have been to interview me and may arrange an MRI following discussion with the clinical lead. The possible outcome could be a diagnosis of Alzheimer's/Dementia. Ho Hum!!
Merry Christmas to one and all, and may the New Year bring you what you wish for.
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LesJames
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HI there, I urge you to have your B12 tested foot drop is a symptom of Pernicious Anaemia, B12 deficiency, this can affect other joints and also cognition also. MaryF
I had a similar thing in 1997 but with months of excruciating nerve pain in my right leg too, running down the perineal nerve. When I saw Prof Hughes in 2002 he said that it sounded like a clot in a nerve. The muscle adjacent and to the outside of my right shin bone wasted away until the matter resolved and I was able to go cycling again.
Excuse me butting in in someone elses thread, but you just hit a nerve.. Literally! I'm new here and very new to Hughes. I have hand muscle wastage which has never been explained. Are you saying you had leg muscles wastage because of a possible nerve clot? Is that a thing?! Can you give me any more info about it please? Thank you.
The muscle wastage happens if a nerve is compromised so that the muscle in question is no longer stimulated and contracted by the impulses from the affected nerve.
I have read a little from earlier events with your APS. Who diagnosed you with APS and put you on Warfarin?
As Dave is saying it could be from too low INR (very very common among us) So I wonder how often you take a veintest (or do you selftest in your fingertip?) and is the INR stable?
If you selftest, have you doubletested with the veintest to assure the numbers do not differ too much and always the SAME difference. I have the same therapeutic level as you have (3.5 - 4.0) and selftest and my machine-value is 0,8 higher in INR than the vein-value at the hospitallab. This is very important to know! Otherwise you go around with a too low INR.
I hope the dogs are fine and get you out a lot as we need exercise with our thick blood.
I understand that you can not exercise when you have pain. I am not so cruel hope you understand.
They have never been able to see anything on my Scans as I have had microemboli. I do not know if you may have that too because it is rather common in APS . We have the same tricky illness but we are all different also.
No they have not. I had an MRI to confirm AS, which had already been diagnosed by a St Thomas's. They could not find AS but did find DISH and 3 herniated Disc's in the Lumbar area. I have had no treatment for that until just recently which is Hydrotherapy. I also had a full set of bloods done. B12 was 368, I paid for Vis D which was normal, elevated white cells PSA was Ok. Just like everything else. I find myself praying for them to find something just to prove it not in my head. Sad really. Thanks for all your support and comments.
I can not understand how your GP can believe you have got Alzheimers. You write such good English! I do not think there is something mentally wrong with you. Bad discs possible.
What does your Specialist of APS say about all this?
I wish you did ask for another anticoagulation drug. Could you ask your Specialist (who is it?) to try LMW Heparin the same as Dave is talking of; a Fragmins-shot every day. Then you do not need to take the INR and can eat whatever you want to.
It is not good when the GPs or Neurologists begin to talk about depression and demense etc etc. They are no specialists of APS. At least they could let you first try with Fragmin. Prof Hughes writes in his books that he is himself surprised how often it helps with thinning the blood. We have too thick blood, that´s all. If you have got APS that is.
If you have problems to walk with your dogs because of pain in leg and back that is not a mental problem is it?
Please do not give up on yourself. Do not let them put you aside. You are not alone here. We understand.
Thanks for your comments. AS is Ankylosing Spondylitis. I see the Lead Haematologist in January, I'll ask him if I can goo on frogmen. I have had the Mental test and was borderline, I now have to wait for the next decision. I try to test my blood every 2-3 days and once a month have the Doctors take it to see if there is a difference.
Have a great Christmas and and even better New Year.
Thank you for the Chistmas and New Year-wishes! The same to you!
Hope you can get Fragmins-shots in January which Dave think is better than Warfarin for him. It is easier at least.
They also tested me for dementia when I had those horrible events of not knowing if my parents were dead. That was before anticoagulation.
At that time I also saw a lot of Neurologists and had a small amount of a tablet to sleep better and the Professor who tested my brain told me to stop taking them as they got acumulated when I took them several days and that was not good for my memory and mind.
After anticoagulation I have not had any neurological symptoms at all.
So you are sure that the "clot"-theory from a too unsteady INR can not be an answer. And you have done the doubletests to find that there is no difference between the two. The veintest should be done at a lab that can send the result very fast so it will not be stuck somewhere.
A Neurologist wanted to operate me for carpaltunnelsyndrome but after Warfarin that pain was gone.
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