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Sticky Blood-Hughes Syndrome Support
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Update on my appointment for my hand etc

Hi all,

I'm still waiting for a hospital appointment for my hand, now reached to my shoulder. No feelings at all now in the last 3 fingers, can't close the hand no more, the nerve pain is now reached up to the shoulder. Telephone hospital, they have advised to get back in touch with my GP as the appointment team has sent it to the neuro surgeon but as they have not had an appointment yet, it's now up to my GP to get in touch with the surgeons themselves. It's been almost a year now, and I'm not now suffering with my hand but my RSD has kicked in real bad and I've also developed a thrombosis due to my APS. My legs are now black up to the knees, I'm now in a lot of pain but I'm on so much painkillers, and a few antidepressants (for my RSD), also my iron is low & Vit B. My allergies are bad now how to carry an epi-pen. My IBS has gone haywire, (just put me down). Oh nearly forgot, the osteoporosis (which I don't remember ever being tested), but due to readings in my blood, the pointers, as they say, are high so I have got osteoporosis. (I don't get it).

I've told my daughter to be re-checked for APS, but they are adamant that she no longer has it. I've told her to get a second opinion, hopefully I can see if Dr Cohen can see her at UCH.

That's me up to date, and I just don't no what where how to cope with all this any more.

Yours frustrated friend

Teanna

25 Replies
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Hello, sorry things are so very rough for you, B12 deficiency can cause terrible problems. including weakness in the hands and also pain, I hope if you are low they can prescribe you injections, that will help. Also if your iron is low your thyroid will not be working so well. If you daughter has previously passed tests, then she will still have it, tests results can come and go. Do make sure they test your calcium and D. I hope your appointment is with somebody who fully understands your condition, sympathies from us lot. Hang on in there. MaryF x

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Sorry to hear of your terrible suffering .would you be able to get in touch with the neurosurgeon's secretary to see if a date has been given for you.

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Hi,

my GP has got in touch with surgeon, and I'm still waiting.

Thank you

Teanna

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Hi again my friend,

I understand that you have not found a new Specialist (you know what qualities she or he should have by know I guess).

Still you have to do that, find that Specialist.

Also for your daughter otherwise you will later be very sorry perhaps.

I wonder if you or your daughter (good for relatives) has read "Sticky Blood Explained" by Kay Thackray?

What are you going to do about the Specialist-problem?

Best wiseh from Kerstin in Stockholm

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Hi Kerstin,

It's absolutely driving me insane. Because I'm under Dr Cohen, she is great in her field, but she had no time for me at my last appointment (I only had 10mins with her), as the ambulance was late picking me up, so I was seen quickly (another clinic needed the room).

My daughter has contacted her GP again and as I said, he was adament she has not got it. But she lives quite away from me, her hospital has not got a specialised APS clinic. It was while she was pregnant the doctors had diagnosed and treated her for APS. but she did fall pregnant a few months after given birth to my grandson, and she still was treated with APS ( fragmin injections daily), all together she had been on fragmin over 2 years. Then when having a check up at her GPs, they told her that she no longer has APS and stopped her fragmin straight away. I don't know if she could contact her doctors secretary who she was under when she was pregnant. I have got the Sticky blood by Kay Tharkray, I can send it to her or buy one online.

Im just at a stand still, I hurt 24/7, I can longer bare this pain, im just hoping that this appointment is around the corner, I will let you when I do.

Regards

Teanna

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Hi Teanna,

Good that things are moving ....... only your daughter who has APS and have stopped the Fragmin. She must find a Specialist as soon as possible as this illness never go away when once positive or diagnosed!

We must never stop anticoagulation even if the antibodies are negative they will come back positive sooner or later. Trouble is the Doctors do not know our illness and have perhaps heard of seronegative antibodies.

Talk to your daughter again or ask her to be a new member here herself.

Sorry that you have such a difficult time at present!

Take care!

Kerstin

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Finally got an appointment to see a specialist mid next month. I'm still not happy, it's to see if it could help with the cortisone injection in a clinic (my GP gives these injections but she told me that I needed to see a neurologist first). Im really shocked because knowing I'm just going to see a GP but in another health clinic, surely my own GP could of done it. But I'm on a ladder now (at last), but my hand has deteriorated so bad that it's distorted the hand and fingers and the nerve pain is up to the shoulder. My hand goes into spasms, and they don't look normal, this happens if I use the hand for a little while. I no longer can grip, the to end fingers are now stone cold and the end fingernail has gone completely white, and it you just press it, it feels like a1,000 volts goes straight up my arm. (Sorry for going on or I may have repeated things buts it's frustrating). It also feels like a bit of RSD, as I cannot bare any hotish water on it, just like my legs, I have to use tepid water to shower, and to others it feels cold.

I also need to check my Thyroid levels as I'm fatigue all the time, I don't want to do nothing, my hair has started to fall out again. I'm in a complete mess. I was told to try a Gluten free diet, but will it help?? Last week I was unconscious for 6/7 hrs on the kitchen floor, I know, don't tell me, I should of gone somewhere, but to be honest I have given up on the NHS. I have a link line, but I do forget to put it on as I haven't had a fall for quite a while. I do have days when I'm in and out of it, (it's not due to medication), it's just my body telling me that it's exhausted especially if I go shopping for the day with my carer on a Friday, Saturday I cannot move and I'm incoherent.

I think I've said it all and I can tell you all because we're all going through some kind of health problems, but trying to tell the Doctors, it's a waste of time.

Again I'm very sorry for going on, but thank you for being there.

Kind regards to all

Teanna

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Is it possible you could be having mini strokes? ( I'm sorry to join in late to the conversation...) is your INR high enough? Holly is an expert on TOS- thoracic outlet syndrome- Holly- is this possibly a problem here? What is the problem with the arm? I'm sorry? I don't mean to be a bother by asking redundant of silly questions that don't apply- especially when you don't feel well.

I recently saw a very fine hematologist who explained the tiny delicate capillaries that supply the nerves coming out of the spine can clot...

I'm having this. ( off balance- mimickes the transverse myelitis, MS... maybe further up the spine can cause also the arm, shoulder, hand?)

Can happen every where nerves need to be "innervated." Bowels, eyes...

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Hi,

I did have a TIA due to a reaction to an antibiotic, and a possible second when I had a DVT & PE both together, (That's when I was diagnosed with APS).

I have lumbar facet joint disease and I have had back surgery. Ive had this since I was pregnant with my son (24yrs ago), ive been ill ever since. One thing after another. I will never be free of pain in my back, and that got worse when I had a RTA in 2008 in an ambulance. I also lost the feeling of the bladder, so I catheterise daily, (the bladder is made up of nerves etc. I could go on, but I'm now had enough, as the doctors say themselves, I'm to complexed. I was a guinea pig to them, nothing seem to work and I've never been free of pain for 24yrs. I can no longer lay down (since my accident 2008).

As you do when you go to see yr GP, I have a list, I also suggest things to her, and as I've said before in one of my posts, my GP replies, "you may have it," (that's only because my daughter has Fibromyalgia), her systems are quite similar.

I'm sorry to go on, I just can't bear no more. It's a struggle, I can't carry on with pain 24/7, and getting no answers.

Thanks for taking time to read and give advice, it's just nice to know that everyone can share and help when needed. There are worse off people than myself as I said.

Thank you

Kind regards

Teanna

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Sorry as to the pain and feelings that started in the hand then went up to my shoulder, it's a continuous pins and needles, then a huge electric shock if I catch the fingers esp the end 2, it shoots up my arm, and I cannot bear anything touching the fingers, esp the tips.

Sorry I re read yr message and missed out my feelings in the hanf/arm.

Regards

Teanna

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Hi, good that things are moving, hope the cortisone helps. Everything else is too much for you though - is it possible to get back and see Dr Cohen? Maybe ring secretary and explain how you are feeling, and yes you need all the tests done, iron, B12, Thyroid.. I know you are at the end of your tether with the NHS, but for your sake persivere, this is your health & you are important. Wear your alarm & dont lay unconcious/sleep for hours - this is not right. xx

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Hi Holly,

I've had blood tests done by my GP a few months ago and I was low on B12 also I'm on folic acid for Iron. I also compared some of my tests from the month before and I notice that a few of the was high, but my GP was to re test next month. But when I need to get answers, I get "maybe, it could be", but I never get the true answer because I'm to complexed. That's their saying not mine.

Thank you for your suggestions.

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Oh I get told that so often. Really annoying - but doesnt help!!

I re word it for them - yes Im complicated but at least not boring - please see me as a challenge and help me...

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Hi Teanna,

Good suggestion from Holly to call Dr Cohens secretary and tell her how you feel etc. Could that be possible do you think?

When you finally find a Specialist to go to, tell that Doctor that your daughter also needs a Specialist.

As you say you are among friends here as we understand how it is and the Doctors do not. You just go on telling us what is on your mind! We also learn from eachother. I hope you will be better very soon now!

Kerstin in Stockholm

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Hi again,

Because of my IBS, and everything else, would a gluten free diet help? I did see a dietician about my conditions, she suggested a few things, this was 2yrs ago and she was supposed to see me often until things subsided, she never got back to me. Now they only see people on emergency basis because of the cut backs, (just my luck). Would a gluten diet help with my other health issues?

Sorry for bothering you again

Regards

Teanna

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Hi Teanna,

Perhaps you could see your dietician again. You have so many things to think of at the moment but you could ask for a test of Celiac disease and that should be BEFORE you start to cut down on those foods.

We can be sensitive to Gluten even tested negative on the bloodtest for Celiac disease. I think most people feel better when avoiding gluten in bread etc.

Kerstin

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Hi Kerstin

Thank you for putting up with me, I really appreciate your advice and your patience with me.

I did have a patch test done a few years ago, and if I go through the list of my allergies your be stunned. From E45 cream, all NSAID, shampoo, medical dressings, creams, (so I have to buy my own), E320, Latex, some medications, No processed foods, compression stockings, (because of the elastic in them), The list is as long as an elastic band, so I have to carry a Epi-pen.

I just can't seem to get on top of things, I think that's why the Doctors don't want to get involved, to much trouble.

Thanks for listening, and giving me advice. And sorry for my complaining about things, there are a lot more people worse off than me.

Kind regards

Teanna

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Hi Teanna,

No problem at all to listen to you, on the contrary.....

With all that allergies I think you should see a very good Dietist! What we eat is of great importance especially for us with Sticky Blood and then I do not talk about the K-vit rich vegs this time.

MaryF talks about a lot of bloodtests we should order. Some of the bloodtests you can find here first on your post 16 days ago .

Keep well!

Kerstin

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Hi Kerstin,

Thanks for all your advice and your compassion to put up with me with all my health issues. I feel human on here (if you know what I mean)?

Thank you very much and I will look up the test as I forgot about it (Brain fog).

Kindest regards

Teanna

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Thanks Kerstin,

As regards to seeing Dr Cohen, I've got to wait until my next appointment, hopefully they can fit me in beforehand.

Thanks for your advice, it means a lot.

Kind regards

Teanna

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Hi Teanna,

Hope they can fix you in beforehand!

Marys Expert-tips about important bloodanalyses;

TSH, T3, reverse T3, Free T4 + Thyroid antibodies, Cortisol levels, Ferritin, Folat.

Kerstin

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Thanks Kerstin you have been a great help.

Kindest regards

Teanna

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Hi Kerstin

I don’t know if you had seen my message I sent to you but it was an update on my medical problems. I had an appointment with the pain management team and they were totally discussed that firstly I’ve been overdosed with opiates 6.5 times over the legal limit with the BSA. Some of my problems have been bought on by my medication. I was in shock. My Thyroid was caused by overdosing on opiates etc. The Doctor that I saw was brilliant, and has he said, whether you take 2 tablets x 4 a day or 1 x 4, it would do the same thing, it does not take the pain any less to what it is now. So my pain will not get any better, so the plan is to work with the PM team, (it could take as long as 2yes), also the physiotherapist (I did tell him that it aggravated my problems), he told me not to worry, everything is up to me, but the amount of medication is slowly damaging my organs. (I would not mind but it was their team that put me on them), but now they have they have learnt a lot since I last saw them.

My worse worries are my 2 girls, my eldest GP is so reluctant that she has NOT got APS, and really has been trying to get another opinion, no one seems to want to trend on ones foot, if you know what I mean, and it does not help with her having a bad flair up of Fyberomgia. (Again spellling my brain fog is all over the place).

My other daughter has under active thyroid but she knew that something was going on, she was always on the go, she has been really poorly, and that’s not her, she’s the one that’s keeps everyone laughing, etc. I told her to have the other 2 tests done which they don’t usually test, her GP was very rude and would not do it until she got enough evidence, she wrote a list of all her symptoms, eventually he gave in and she had the blood test and the next day they rang and her results was way of the marks. She has to see an entomologist (I think that how you spell it), it could be Hashimoto’s, I feel so sorry for both of them because I can’t help out with my grandchildren, I feel like I’ve letting them down, plus 3 out of 4 of my grandchildren have health issues to. (What a great nanna (that’s what they call me), I am to them. My daughters tell me not to worry, but I do. Now, Until my hand is sorted out (27th Oct), I have not got a clue what’s going to happen, even down to the osteoporosis and all the other issues that’s not been taken into consideration. It’s so frighting.

Sorry for going on, but that’s me up to date now.

Thanks all for your replies and advice, I don’t feel so alone.

Kind regards

Teanna

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Hi again Teanna,

I am sorry that you have got so many different problems also with your daughters. But your youngest have been taking bloodtests and things are happening. You will see things slowly will be easier for all three of you.

Hope you could see Dr Cohen soon and also try to get a Specialist for all of you three as you probably have autoimmun illnesses.

Please do not give yourself guilt for having our illness. I understand how you feel but It sounds as if your daughters understand what is happening as they are involved in trying to get tested and to find a Specialist.

I will keep my fingers crossed for all of you three and I wish that the sun will shine again on you and make you happy and well! Good Luck on October 27!

Kerstin

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Thank you very much Kerstin, it’ seems that I’m constantly feeling sorry for myself, I’m far from it. It’s just not knowing, and the guilt for my kids.

But thank you very much for yr advice and listening to me.

Thank you

Kindest regards

Teanna

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