Hi all needed a rant as am really struggling. I have not slept properly for about two weeks. Prof D Cruz diagnosed my numb hands as Thoracic Outlet Syndrome but having read up on this a lot I’m not so sure. I am waking up every half hour or so with my hands and lower arms numb regardless of how I sleep or where I put my arms.
On top of this I am struggling more and more doing things that used to be so easy. I make more and more mistakes and my memory is getting so bad I can barely remember what I was doing 4 days ago!
The pains that are running through my arms and legs at times are excruciating and the headaches make my childhood migraines seem like a walk in the park.
I am sick and tired of this disabling disease that nobody really understands apart from you guys and girls. When I was first diagnosed I though ok I can deal with this but I am tired. I can’t exactly take time of sick as it’s my own Company ski have to keep going but it is just such a struggle.
Add that to the fact nobody from Prof D Cruz, Dr P Holmes to Prof B Hunt appear to know how the deterioration in my mental faculty in Cerebral APS is really caused means there is no real treatment. Just take this medicine or that as it’s side effects appear to help talk about to feeling like a guinea pig! And I think I have read all the experimental papers on the research and they still can’t discover if it’s micro clots or the interaction with the epithelial lining of the blood vessels of the brain.
Sorry all it’s been a tough week and an even tougher weekend! Thanks for reading it’s done me good just letting it out.
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The normal MRIs are good news but then it is difficult to explain the cognitive problems. I have been told that MRIs do not get everything. It could be an explanation.
Have you done any Thyroid tests beyond the standard, very one size fits all tests? As both a malfunctioning Thyroid not picked up properly or indeed B12/Folate deficiency can add to these sort of problems greatly? MaryF
Rant away, your symptoms are unique to you but we can emphasise!Re the TOS, yes exactly the same as my symptoms, especially at night! I get woken to completely dead arms, then have to brace for the pain, when the blood starts circulating. Doesnt help you but at least you are not alone.
Just one thing coming to my mind, have you had your B12 checked recently? If that's running low it could account for some of the symptoms getting worse.
Might be time to start a diary, jotting down what you do, how you feel etc, so when that brain goes blank you can read & remind yourself.
Try and keep positive, pick up the good things in life, we are all struggling with that on at the mo?!
My neurologist just passed away if Covid, and my vascular surgeon is a much older gentleman, who has battled very severe leukemia recently. He has now retired due to his risk with Covid.
I have a new DVT in arm again, but the lowest the iNR for was 5.2. After clot the inr continued to be unstable and did dip to 4.5 for a day.
My new range after this current clot has been moved to 6.0 minimum.
I am frustrated that my hematologist will not let me trial fondaparinux with an anti platelet. ( I think the rapid failure of high intensity apixiban was the reason.)
Im going to ask for perhaps a trial if three dosings in a 24 hour period of enoxaparin plus persantine ? Maybe? Or... maybe trial again the split dose but add aspirin or persantine and clopidogrel both like you do instead of just the clopidogrel.
I felt so unwell last time we switched back to warfarin only offer about 7 days- ( had clots but I was still so unwell and clotting from apixaban) and clopidogrel had not yet had time to reach to level in my system.
Warfarin really does not suit me. I’m going from 4.4 to 8.8 in 2 weeks time. And still clotting.
So sorry to read what a rough time you are having. I hope you can find some relief. Sending you love and healing thoughts. Please keep in touch. Anita in Colorado
I suppose with cerebral APS I am similar but it’s in daytime when feet and hand can go numb.sometimes it’s just some fingers.my memory is rubbish and rely on my husband to remind me things.I look at something and for minutes can’t think what it’s called.eg a patio .I do keep a diary and a calendar where I write most things.My calendar with birthdays plus ages and appointments I can’t live without.I have other health problems so always told am complex.I had to medically retire from work when I was about 53 . I was told I have micro clots on brain and white lesions but it has effected my balance and have symptoms that mirror MS with walking. As for your pain you do need help with medication to control this or it will control you
So sorry to hear that you are struggling with so many symptoms . I had a period of six months where everything was getting worse for me. I asked to be put on heparin injections because I felt so much better on them than on when I was switched to warfarin. It did make an enormous difference and I have been on on it since. I think you need to be in touch with your consultant to let them know that you are struggling and maybe GP for some blood tests. Many of us were found to be low in vitamin d, and most of population are low this time of year in uk.B12 has also been mentioned. I found that going gluten free also helped. It may be a case of trial and error to find out what will help.
Do stay in touch on here, and I do hope that you start to feel better soon.
Sending prayers and good wishes. Your symptoms are my symptoms and your pain is understood. I’ve yet to see a specialist about diagnosed primary APS. I’m on warfarin and only have a GP and hematologist, both of whom I must instruct regarding symptoms and daily struggles. Quite honestly, without this blog, I don’t know how I’d get along-no judging, complete understanding, and compassion. I’m retired, have added vitamins D, B, and Zinc along with trying to stay off anything that resembles gluten or other inflammatories. Keep doing what you’re doing, remember-it’s a journey. Change your course as needed, enjoy what you can, and appreciate the folks you meet along the way. We/they are here for you.
Lure yes been building it up as was on last day of bridging prior to knee op being cancelled so didn’t want any more injections so as of last night was 3.6 but Prof Hint’s SO wrote to my Doc saying finger prick test not accurate but when I called saying can I have a pile of signed blood test forms they couldn’t understand why ! Bloody health unprofessionals. I know they are all doing a great job but for once I would like not to explain myself 20 times! See still ranting!
I too am so sorry to read of your struggles. I suffered from migraines and what MRIs revealed were mini strokes, plus DVTs. Got a diagnosis and placed on warfarin. Migraines stopped. MRI revealed no more mini strokes. But transient fatigue continued. THEN, I finally listened to a friend who kept nagging me about going on a low carb diet. I did, and within a few days, my whole life changed. My energy levels soared. Turns out? I had a gluten allergy/sensitivity. So, I would not suggest that going gluten free would have such a dramatic effect on everyone, but I highly recommend giving it a try.
I had been gluten free for over a month when that diagnostic GTT test was ordered. It came back negative, but I was told that negative tests are quite common in celiac patients who have avoided gluten for the weeks or even days prior to the tests. But all those rheumatoid factor tests? Went from "sky high" (IgG) and "high" (IgM) and "fairly high" IgA) down to a "boring" normal. All doctors who have seen these numbers conclude that, Yes, I do have Celiac and staying off gluten is very important.
And other food sensitivities/allergies are possible. Keeping a log of foods and activities against symptoms might reveal a trigger. Consulting with a nutritionist or a functional medicine practitioner may also help. (Functional medicine has an undeserved bad reputation. Functional docs seek to find and eliminate the cause of disease -- and not just treat the symptom. Finding individual causes rarely involves gains for Big Pharma, and treating individual patients for their individual symptoms and causes rarely can adhere to an established double trial/placebo procedure. )
Good luck, and thoughts and prayers from West Virginia.
Thanks Gina been tested fir just about everything Prof Hunt said Lupus like syndrome but can’t find anything out about that but test negative for lupus!
Really sorry to read what you are experiencing. I have APS which is under control now and take warfarin. I have lesions on the brain in my memory area found on MRI. I was up and down all the time and had to give up work in the operating theatres as my energy levels were so low I got exhausted and my memory was terrible. I now eat a gluten free diet and also make sure I keep my brain hydrated with water daily about two pints. I have stabilised since doing that but really sympathise with you. I now work for myself so can control my hours and with the food regime I seem to have been stable for a while. My mother gets the numbness and has Rheumatoid she gets dead arms and wakes in the night in pain. She has kept a diary and noticed certain foods do make things worse. Both my mother and I for some reason found Benecol yoghurts one a day beneficial but no idea why. She has stopped eating bread and feels better for the less gluten as do I. Food won't cure it all but I personally believe it can help to manage. Hope you stabilise a little soon.
Its very hard I know running your own company but at the same time it gives you a sense of still being out there in the world doing life and some normality although it is twice as hard. Are you able to cut your hours down and do your job part time ? Thats what I have done and life is a lot better. I am fortunate to have support from my husband which enabled me to do that. We had to get used to less money but my quality of life is better.
Stress is a big trigger for both myself and my Mum. Usually any stress has a knock on effect four to six weeks later.
There isn’t a single blood test for SLE. Diagnosis is based on clinical evaluation over time. It took Dr Hughes 18 months to get a diagnosis. There are lupus variants that cross dermatomyositis-myositis etc My initial diagnosis was MS.
I am sorry you are going through this and feel so poorly understood by your doctors.
Have you asked her if blood work may point to an undiagnosed food sensitivity. Despite being gluten free for 10 years, ( with much better health,) blood work run by Functional Med doc at Cleveland Clinicprompted the nutritionist to guess I was reacting to a "high histamine " food. I added tomatoes, eggplant, and cashews to my trial restrictive diet and . ... CASHEWS! I am allergic- sensitive to cashews! Who'da thought? My health took another turn for the better. At age 65 I have more energy and feel better than age 25.
I have CNS vasculitis and APS. Every time I have an MRI they also included an MRA which looks at the small vessels. Perhaps it would enlighten your doctors. Also, I found when I actually spoke to pathology, I found the pathologist most willing to share information. They could be looking in the wrong place and the pathologist may redirect them. Also, I hate to be the bearer of bad news, but I don't think it stops or that they will ever have a "cure". They can only treat the symptoms. Also, one of the best things on this site is that one doesn't have to apologize for a good ole rant. A good rant makes me feel more powerful and therefore gives me the fortitude to face another day. You are certainly not alone. Good luck on your journey. CanaryDiamond10
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