sorry this is going to be a real rant and rave I absolutely feel at the end of my tether
So please bare with me I was diagnosed at ST Thomas hospital after a week as an inpatient I was diagnosed with sero -negative APS and a demyelinating condition caused by an underlying vascular disorder
Although I had a positive lumbar puncture for MS and demyelination of C2 to C6 I had previously had many miscarriages and many many clots including an ileo femoral DVT and a pulmonary embolism
I was treated with steroid and azathioprine then 6 mths cyclophosphamide
Told to keep my INR at 3 to 4 to prevent neurological symptoms
In fact I was a success story I moved to Cornwall so long as I got my coagucheck strips and warfarin I had no need of a DR
Then I joined a new GP practice
The DR decided as I had not had a clot in 20 years I did not need warfarin and he wouldn't prescribe it
I was actually fine for nearly two years Then I developed a dvt in the left calf and was given Fragmin
It was the start of the covid out break and so I didn't get an appointment at the DVT clinic
in the end I gave up I had taken 6 weeks of fragmin and felt fine I asked the DR for warfarin again he declined
6mths later I developed excruciating Trigeminal neuralgia (diagnosed by DR google) which culminated in the most terrible pain I have ever had and The GP said he would ring back when I had pulled myself together
He did this 5 times altogether and as I was unable to speak my husband took the calls
He explained that I couldn't talk see out of my left eye and had lost all sensation on the left side on the left side of my face was a slightly purple colour
He told the DR he was ringing an ambulance to which the DR replied He was wasting their time
After visiting the TIA clinic I received a letter to say my MRI was reassuringly normal
Only to receive an appointment 3 mths later at the young persons stroke clinic where she explained I had indeed had a stroke ( Had lost a quarter of my eyesight in both eyes ) and had established white matter disease
She decided I did indeed need high dose warfarin (and again my GP would not comply as he didn't think it was necessary)
At this point I changed GP Practice Although they have given me strips and warfarin I fear it is too late
I just feel so ill I have given up the fight I feel I cannot fight them anymore
My DR rather insultingly I feel has referred me to a pain clinic
I am just so angry it is making me feel ill as I know I need a referral to a rheumatologist and a neurologist
I don't need pain relief I need urgent immune suppression I fear I have had another stroke I didn't bother going to the hospital this time what is the point
I think my only answer is a private appointment with Professor D Cruz ( which I cannot afford and will have to go into debt on my credit card after Christmas
There is absolutely no chance of my GP making a referral The anger is just burning up inside me it really is I have even contemplated suicide to get rid of the pain once and for all
Thanks for reading my post I feel better for writing it
Written by
mully
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Hi Mully...I honestly have no words but I empathise with the whole medical odyssey as we have similar stories (St Thomas, APS, Fragmin, warfarin, inadequate healthcare, mental health decline, etc). I am really sorry and I can only hope that you know THAT YOU ARE NOT ALONE IN THIS!!! I am going through it, and many others as well. If venting makes you feel better, so be it. I will be listening.
You are stronger than you think, although at times it doesn't feel like it. Reach out any time, and take good care of yourself because you are worth it ❤️
Incredible that a doctor decided to stop a treatment that was working, and consequently, you got a relapse of the disease! I really hope that you get better soon! Orlando
If you can't rant here where can you?Reading this and your previous posts I think I would be murderous - your entitled to be so so angry.
I really can't advise, yes you can complain to medical board but that is not what you need right now.
The only experience I can bring to the table was when my clexane was refused by my GP. I went white with rage, panicked as I didn't want further strokes!
In desperation I lodged a letter with my GP, copying in my specialist and my lawyer - stating that them withholding my life saving drugs they were putting me at risk. If anything happened to me. I and my family would hold them to blame. Three hours later I had a call my prescription was ready.
Not sure if that helps but putting something in black and white, how you hold your previous GP responsible for ignoring your diagnose, your desperation that you feel now, that you request to see an APS specialist should be met, even if that required you to travel to London.
I live in Devon (last 6 years) - I still travel to my specialist in London, so don't let them fob you off it's out of the area).
Keep going, your a fighter and please posting, especially if it helps xx
If you write a letter to the GMC much the same as you have above, adding in names and dates etc of what happened to you with your previous GP, it will be investigated and they will only ask you for the information that they need. They will explain to you the process as it goes along which is very straight forward.
No one should put up with what you have had to endure so I hope that it helps.
As for getting a referral now, everyone is allowed a second opinion. Therefore you must write to your GP's Practice Manager stating what you want and why and that until they grant it you hold them responsible for anything that happens to you as you consider your request to be very urgent.
I hope that things improve for you but always remember that you have people here that care.
Post like this make me so angry-because the doctors just won't listen!! I remember the long road to diagnosis and even though at the time my GP didn't know what was wrong with all the weird symptoms I was having, he didn't give up and I felt I had struck gold when a visit to the Rheumy after PE's, he said 'I know what that is and you also need to see Haematologist. I get 6 monthly blood tests while on Clexane (like Holly could never keep a stable INR) and after the first few triple +ve tests for APS hr told me there was little point for further testing as I would have this for life and needed to keep it under control. When feeling down and in pain you just don't have the energy to fight back. Some doctors take such a superior stance and won't back down when proven wrong. I do hope you can maybe get some answers on here re other doctors that may help you. Hugs from Oz.
Doctors like to play God and we tend to trust and believe them but when you know things aren’t right stick firm.You don’t need to be rude thou you feel like you want to be.I was in hospital a month and transferred from one hospital department ward to another three times.They didn’t know what was wrong.I repeatedly requested my rheumatologist and thought all would be ok on his ward until he asked his colleague to step in.Finally I had to give in to being discharged after privately purchasing a wheelchair as I couldn’t walk n they wouldn’t supply one.Thought agreeing to reduce one medication to please him and given referrals to others hospitals would be ok but they did not appear and was even told I wasn’t a patient of this one who discharged me.I was.I went to PALS and successfully gained the referrals and my rheumatologist was accused of neglect.If you do manage to see Professor David d Cruz as I did you will be in great hands as he blew me away with what he showed me on MRI which rheumatologist previously had said there was nothing.Things we’re explained and he got my rheumatologist to give stronger biologic for rheumatoid arthritis.Don’t ever give up
You are not alone! As many others on this site, my initial life threatening symptoms were dismissed by some doctors. I remember a middle of the night ambulance trip to an ER after waking, unable to roll over with total left side paralysis. Droopy left side face was an obvious symptom. But the ER doc said to the ER medic as he stepped away from my bed, " She has low cholesterol and blood pressure. She's young. She obviously just wants attention. She is faking her symptoms and YOU FELL FOR IT,"
After all these years, I wish I knew that doctor and could confront him:" How did I fake my left side facial paralysis? Tell me how. and I'll patent the procedure then offer the instructions for sale. Given the number of students who need another day or two to finish the term paper or cram for the exam, I'd be a millionare in a week!"
The answer is clear to me but I don’t know how you feel about it…
The true gift is you.
( I’m going to assume you mean Christmas gift debt?)
Do you know what it is truly your family wants for you at Christmas?
Your health! Please ask for this to be the only gift you ask for this season.
Your family will not want you to spend money on anything else. You can make small gifts for the holidays… a gift card saying that a cooking lesson to make ( insert name) favorite dish is the gift.
How do I know? ( well, we all would agree!)
But… my mother died on Christmas Eve / early Christmas morning of a stroke due to APS.
I am so sorry things are so bad for you currently, I am glad you are telling us about it. Do have a look on here to see if there is somebody you could go and see, also others from the Devon area maybe able to help you. ghicworld.org/ghic-consulta... I know it is daunting when feeling so ill, and can you find your most articulate and firm friend, relative, neighbour or work colleague to come with you to the GP surgery and support asking for a referral or to help you write to the practice manager. You clearly need your Warfarin. I will also say that it is really not uncommon to have other disorders, B12 deficiency is often missed as a) the levels are set rather low and b) it seems to be a post code lottery as to whether the GP's know much about it etc.
I enclose these papers for you, I myself had terrible problems with B12, (pills are useless), and my children all have Pernicious Anaemia. Since starting on B complex with Folate in it, (all overseen by our GP), and adding in B12 injections things are very much better for all of us.
If your GP is still refusing to prescribe your Warfarin, please do take that issue back to the doctor who diagnosed you stroke, last time. Write your medical history of these events in bullet points and your current symptoms and push hard, it is your right to have it, and you must gather your friends and family around to help you. MaryF
My prayers are with you. I have been on so many roads that lead to dead ends, cliffs and floods. I have found peaceful fields, valleys and love of people along my journey. The most important thing is listen to your gut and stand up for yourself. There is so many wonderful people here to help guide you and support you. And to hold you up!Hugs
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