I don’t know if anyone has been following my problem regarding my Hand/Arm. After 2yrs from the start of the problem with my arm and to see the anaesthetist (which I was prepared for), but they decided to put me in the bracket of a High Risk patient, she told me that she had received a report (this was done within a week of seeing the surgeon), that because of amount of time that has passed, there is no way I will get any feelings up to my shoulder nor get my grip back in the hand the only thing that might work is 50/50 chance of stopping the pins and needles in 2 end fingers but there is also a 50/50 chance of getting a DVT,PE, a TIA and the worse is dying on the table. So you can imagine, I’d rather put up with the nearve pain,I’m hoping they will put me on some kind of nerve block although I’m already taking some medication but it’s not relieving anything at all. I used to have gwenathadine blocks (I’m not sure about the spelling),
She said if this operation was done earlier, it would have worked. My only hobbies I had was painting and making jewellery, (my family had set me up to have my own business), now it’s just a dream.
Could I take this further as I have lost everything. I just stay in looking at 4 walls. I’m at a low !!!!!
Teanna
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Teanna
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Nobody can advise you, but I can tell you at some time, most of us here have felt your frustration.
I have learnt despite what many doctors over the years have said to me I have learnt to listen to my body and go with my instinct and push for what is right for me? I feel as long as I know the risks and can make a rational decision then that decision should be my choice. Despite this reasoning I have still had to fight.
So - I must ask you to ask yourself those questions. Look and list the worse scenarios and the maybe positives, go with what you feel you can live with.
You mention your dream and your family support - now time to discuss this with them?
You may not like the outcome but the important thing here is its your life, your health and quality of your life is in your control.
I'm not sure this reply helps but it may change the way you look at yourself? Im really sorry you are going through all this xx
I agree wholeheartedly with this reply you have been given by my fellow administrator/colleague. As you try and work this all out with yourself and your family, do make sure you seek a second opinion with somebody fully recommended who understands Hughes Syndrome/APS and also see if there are other things you can do to help, ie is your B12 at the right level, as I know nerve pain is worse if it is no so, and all the other things I normally mention such as Thyroid function, D, folate and Iron, I realise this is skirting around the edges a bit, but better to make sure that nothing is making it any worse. Also perhaps talking to somebody independent regarding your stress levels would help, sending you a virtual hug. MaryF
Which operation were you going to have, if it's okay to ask?
I have many other health issues, including APS. I’ve had a DVT with a INR of 4.2. My liver is not working properly, and having tests and scans done. RSD which now comes Under Chronic pain sufferer, which is to do with the nerves in my feet and the left hand. Osteoporosis, suspected TIA (2 of them). Under active thyroid, now I’m having test down for lupus. The list goes on.
I wonder if you now have found a Specialist of autoimmun illnesses as I have read about Thryoid-issues as well as APS-diagnose. How is your daughter? Does she have a Specialist?
What anticoagulationdrug are you on. You had a rather high INR before up to an INR of 4.5.
She still is having problems with her GP in getting a second opinion for APS, she also has fibromyalgia. My mum has CIPD, and lupus, plus other nerve issues.
So it’s a vicious circle. My daughter is taking a small dose of aspirin,
I’m taking folic acid, I also had the pain management team come to my home (which is very rare), his going to change the gabapentin to the other one which is similar. And his also putting me on calcium and some other tablet as my spine is deteriorating. So now I’ve got to the stage where I’m giving up. I’ve never had a spot on my face, now I have this rash, (but it’s not the butterfly shape) but he did say that it don’t have to be to have lupus, my mums just has the rash. But I’m having the blood test done. I know I’m run down (sores in and out of my mouth.
It made me feel sad to read your post. I think most of us have felt very low at times with this illness. I have recently. I think we feel at our lowest when we feel out of control of our life and dreams and bodies. I saw a poster once it was a play on words. It said H.O.P.E in a vertical layout and then in small letters after each bold letter it spelled out Have only positive expectations. Which of course is what hope is. I would urge you to give yourself some hope. Is there a way of painting in a different way ? Can you find ways around the jewellery making. Can you work with someone else and tell them what to do so it is your design and vision still ?
I worked in the operating theatres before I got this illness and they do tell everyone no matter what the surgery there is a risk of dying on the table. Even people with excellent health. I think you need to look into how much risk there is for you personally and make your decision with more knowledge. Knowledge is power in life.
Stay strong. You are obviously artistic. Could you do some other form of art like design ?
Can you get out and walk ? sorry I don't know your full background. If you can don't sit inside it will make you feel worse.
I really hope you are in a better place soon. Dig deep.
I understand what you are experiencing. It took me four years of research and contemplation to decide to go ahead with a dangerous procedure. It is frightening. Finally i based it on: “ Is there anything more “I” can do myself? Can i live with this knowing “I” cant, and be ok with that”, i realized then i had to do whatever i could, or i should say, whatever “others” could do to help me. Its not easy being vulnerable but i cant spend another thirty, forty, perhaps fifty years as i am. Its just not acceptable! Echolailia: its your decision. I guess my advice is how much can you tolerate? I wish you well. Please keep us posted. Feel free to PM me if you need to. Cindy
You have told us before you live in the north of England. It must be possible to get in contact with a Specialist of autoimmun illnesses.
When I read what you say it is possible you have APS, Sjögrens (often misdiagnosed as Fibromyalgia as you also talk about) and also Thyroid-issues on your list.
So you really need a Specialist of autoimmun illnesses who has a great knowledge of APS etc.
I have learnt here that a Specialist is the most important thing for us together with a proper anticoagulation to thin our too sticky blood!
I wish you and your daughter good luck to find that Specialist now!
Probably I have already asked you two years ago but I do it again; have you read "Sticky Blood Explained" by Kay Thackray?
Prof Hughes says in his November-blog that he thinks that her book is the best book about APS. I totally agree.
Yes I have APS, and I’m under Dr Cohen at UCLH. But my GP got fed up waiting for something to be done at UCLH she sent me to another hospital. I did try to say to my GP that this hospital did not know much about APS, and that my dad was in ITU and I asked if they could test my dad for APS. There reply was that they do not do the test here because it’s too expensive, (by the time my dad had already 2 DVTs). Sadly my dad passed not along time after. And this is the hospital that has left me for 2yrs. This what frightens me as well. So I told my GP, Dr Cohen is the best in the field of APS, but she would not interfere with another hospital that’s already treating me (2yrs to late).
I am worried for you and your daughter that you do not have a Specialist of autoimmun illnesses!
Could you start again with Dr Cohen (I have heard about that Doctor) and if that is impossible as your GP thought otherwise. GPs are not Specialists of autoimmun illnesses and that is what you two need now. Sometimes we have to switch to other Doctors (also GPs if they do the wrong things with us). Many symptoms are related to our APS and it is most important to have a correct diagnose and correct anticoagulation and other drugs needed.
How old is your daughter? Can you talk to her about this and has she read "Sticky Blood Explained" by Kay Thackray perhaps? I guess not.
I have been on low dose amytriptaline to prevent migraines for about 5 weeks and it is working- still get migraines but not nearly as often. I just read, however, that it is in a category of drugs that can increase risk of dementia so plan to ask my neurologist whether the study was with much higher doses. I think it also helps me sleep better.
I wonder what has happened with your arm/shoulder today? Gabapentin, nerve block?
We have talked many times and I have said that I am worried about you and your daughter that you are not getting to a Specialist of autoimmun illnesses with all your symptoms from also other autoimmun illneeses (you talk of APS, Thyroidea-issues, Fibromyalgia, Lupus, etc You have also had high bloodpressure and I wonder if you have got that down now?
We know that autoimmun illnesses go hand in hand and can very easily be mixed together by a Doctor not knowledable of autoimmun illnesses. It is in fact difficult to get a correct diagnose of some of these illnesses.
I am sure you should be much better if you could talk to a Doctor who works with these sort of patients daily and who knows what drugs we need. I do not think you are anticoagulated correctly either (are you?) and as to APS that is exstremely important. I know you are talking about pain but autoimmun illnesses give you pain and pins and needles can have to do with too thick blood that has to be thinned. You need to be treated correctly at last!
As you live in England it must be some Specialist there for you and your daugther. I live in Sweden otherwise I should try to help you to a Doctor.
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