Sticky Blood-Hughes Syndrome Support
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Has anyone heard of neurological function disorder?

Iam really upset as I thought finally I was getting somewhere with answers to all these symptoms and when days I cant walk, cant function, cant speak, cant co ordinate.I have reacently had to be catheterised as was admitted to hospital as couldnt urinate and my bladder kept filling and filling I was in so much pain I had a perminant catheter for 6 days. I now have to self catheterise twice a day. I dont have signals to urinate and now my bowel is all over place. I have brain fog, memory issues, I can concentrate. This professor of neurological physio has said I need to see a phycologist and do more exercise as im overweight. But imonly on the boarder of being overweight. Im a size 14 in most clothes but mainly around waist and tummy and I think im retaining water as some days more bloated than others. Ive been keeping a diary of all my input and outputand when I take tablets, what I eat and drink and when I had perminant catheter I definatly produced more urine. I dont empty my bladder completly sometimes as I dont have signals. IM SO FRUSTRATED! I know my own body and have had mis diagnosis from my local hospital that why me and my doctor are sseeking a second opinion. Now this professor has wrote to my other consultant he has made me look stupid. I dont know whether to go back to myy doctor and discuss this professor of neuro physio and see what shee thinks. He has even wrote to the orthopeadic consultant and I havnt even seen him yet. So he may form an opinion on this professors opinon. I am so upset about this.what should should I do?

7 Replies

I am sorry to hear what you have been going through.

Maybe re talk all this through with your doctor & tell her how you are feeling about the results & the professor you have mentioned....see what they say? maybe she'll put you through another professor & see if they come up with the same answers? you need peace of mind if nothing else on this that the right diagnosis has been made etc.

I hope you get the answers you are looking for, Sue x


You were diagnosed in May this year from your profile. Being treated by a neurological physio for APS is really not what you want. You need to be referred to St Thomas Hospital in London and travelling from Milton keynes is really not that far. You say your GP is willing to give you a second opinion so I would ask to be referred there or secondly you could ask to go to either Kettering or Northampton Hospitals. The name of the Consultants there are on the HSF website under the specialists list of names for APS specialists who you should really be under for treatment. There are also private names there if you can afford and want to be seen more quickly.

I certainly would not be standing for one Doctor writing to another with an opinion before you have even been to see them! If you feel this is getting out of hand and you are being prejudiced then you must make a complaint to the secretary of this Doctor and the PALS department of the Hospital under which he works.



I agree with APsnotFab. Besides neurologists have difficulties to understand APS. Rheumatologs and Hematologs do.

It is important to keep the INR in balance to have any relief from warfarin. I understand you have a difficult situation now but try to keep CONSTANCY in what you eat.

Take care and good luck from Kerstin in Stockholm


Ditto above. I once had a doctor who had similar suspicions about my APS symptoms. He put me down for PTSD, ( which I did have after being attacked in 1976 --but hey! That was 1976!) and then got this overly kind dismissive tone to his voice whenever I tried to describe a new symptom which I was sure was the result of sludgy blood.

To be fair -- there is some research that autoimmune diseases may have their origin NOT in the thymus gland as earlier supposed, but in the involuntary nervous system. We autoimmune patients seem to have involuntary nervous systems that run on " high" and do not idle as often as they should. Problem is, many docs conclude from this association that we patients have some personality-defect which drives neurosis which drives the disease. Apparantly they keep forgetting the meaning of the prefix "in" ("not") in the word " involuntary."

And the specialists who are more likely to make this assumption seem to be neurologists. So second the above opinions: get thee to a hematologist who acknowledges how complex and mystifying blood chemistry is, or to a rheumatologist who knows that autoimmunity is complex and also mystifying and patients are not thinking themselves into sickness


very interesting Gina. Kerstin


Thanks everyone .Im gonna take this letter to my doctor. I have highlighted the irrelevant information and some of the information that is not true. I have complained to PALS at Milton Keynes coz the rheumatoligist I went to see before I was diagnosed with APS said some awful things to me. He wss completly unprofessional and rude and told me I had nothing wrong with me pretty much. Then I was diagnosed with APS by my haematologist as she was ask by my vascular consultant after having blood clot. PALS helped me but I think the neurological team at MK are all mates with this rheumatoligist as ive been ask by all of ghem why I am not seeing this rheumatoligist. Maybe im paranoid aswell as imagining im ill loĺ. I was under st thomas and they discharged me once they gave their second opinion. Im now looked after a haematologist at MK I do trust her but I dont trust some of the othrr teams. I do feel im being fobbed off. I am putting loads of weght on and my belly keeps blowing up like im 9 months pregnant. I am thinking of referral to northampton as I did look on the website and there are rheumatoligist in northampton recommended. Im gonna see what the JR hospital have to offer . My doctor is trying to help me but its all slow going.

Thanks everyone



Hi Andrea, it is me Monica from MK. I tried to email you personally before but it kept coming back, if you would like to email me - my address is in my profile - I will happily talk with you. I have had many of these symptoms and in May was admitted to the stroke ward at MK hospital. However they decided I had FUNCTIONAL HEMPARESIS (which my GP tells me is a mini stroke) and is also a neurological problem. Please do feel free to contact me and hopefully we can meet up and chat about it. I am here if you need a friend



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