Advise please... Sorry, long post!

Hi, I have lurked for a while trying to pluck up courage to post...

My name is Laura and I am 53. I was very ill 10 months ago, taken into hospital suffering from Confusion. I couldn't swallow so didn't eat anything or drink anything for a good week. I didn't recognise who my hubby and Sister were, was acting in a very strange way... Lost all bladder control, had jerking of my right hand. Couldn't really communicate with anyone.

A TIA was rulled out quite quickly but there was an abnormality showing up on the scans, I had a Lumbar puncture, CT & MRIs Loads of blood tests and they diagnosed me with Viral Encephalitis. After 5 days I was transferred from my local hospital in Margate to to the Kent and Canterbury in the neurological ward. I was treated with Acyclovir and slowly improvements were made. Although I was very weak but still wasn't drinking enough and after week was allowed thickened liquid & pureed foods only.

I had electrodes placed on my head and wrists and ankles. I began to talk a bit but in whispered tones only. Convinced people were talking about me. General confusion, agitation and forgetfulness!

Finally after 15 days in hospital I was allowed home but just a few hours before I was due to leave for home one of the neurologists came to see me saying I had APS. Not knowing what it was he explained it as having a blood clot on the brain! I was given warfarin and allowed home.

At my follow up out patients appt I asked my Consultant about this APS and the blood clot and he explained but I couldn't fully understand but he did say that I don't have 'a' blood clot on the brain. I have lots and lots of blood clots on the brain! Now to my way of thinking that sounds words! He said I would be monitored very closely over the coming months.

Then he said he wanted me to see another Consultant neurologist in Canterbury who was more of a specialist in APS. So a few months later when that appt came round he said he was concerned about keeping me on Warfarin for much longer but said that he would see me again in February/March with a view to stopping it.He also said I have an Encephalopathy! Haven't a clue what that is to this day, is it along side Encephalitis and or APS???

Now comes my worries. What if the blood clots haven't gone by then, how will they be able to know if they haven't come back?? And other worries plague me. Should I ask to be kept on Warfarin just in case??

My Consultant has already told my hubby that I shouldn't be left alone for long periods of time as he is concerned the Encephalitis could return. Oh and he said I have Autoimmune Encephalitis not Viral at my last appt! I am already Disabled, as I have ME & Fibromyalgia, COPD (Moderate) constant excruiating headaches since this all started, 24/7, chronic lower back pain and chronic pain in my hips, arthritis in both knees, have absolutely no upper body strength so cannot propel myself in my wheelchair, I cannot hold my arms up for long so can't wash and dry my hair, I cannot stand for more than 5 minutes before my legs wobble and I collapse, I have frequent falls. I am now always in a wheelchair when ever I go anywhere as my mobility has gotten even worse, my memory has really gotten so bad now that I can't even remember my last conversation, I cannot get the right words out, am so very tired but can't sleep properly, I feel like I am a burdon and just want to get better. I was told to expect a long recovery time but I am nowhere near what I was this time last year and even that wasn't brilliant but much better than I am now! They told me in hospital and my hubby confirmed it that I was very lucky to come round because at one point they couldn't even tell my hubby if I would ever get any quality of life!

My hubby is my full time carer and is a good man, he really has been taking great care of me and only leaves me when I am resting in the afternoons to go shopping knowing that I won't wake for a couple of hours. But it is only us as we live an good hour away from my Sister and two hours from his family! We don't have any friends so don't get to socialise so he doesn't really ever get a break from caring for me!

Sorry... Didn't realise I had written so much...

Laura

[MaryF Administrator]

Hello and welcome, I am very pleased that you have posted, I would be interested to know if your new specialist is off our list of recommended specialists? hughes-syndrome.org/self-he...

I will also add that many of us end up with a Thyroid problem alongside the Hughes Syndrome/APS, this is not always picked up due the TSH test which is often the only one they do. Often the ME and Fibro turns out to be that. I had this, and did extensive private testing beyond the TSH and it then showed up. It is also very important to get your vitamin D, B12 and Iron checked to see that your levels are good. An untreated thyroid can make you very immobile and unwell. Often the trio of disease is Hughes Syndrome, Sjogrens and a Thyroid problem.

I will also say you are not the first to have Encephalitis, and it is totally crucial that you have the right specialists who fully understands the condition. There are alternatives to Warfarin. It is not unusual to have in cases like yours a Rhematologist and a Haematologist with imput from a Neurologist if required.

I hope your next appointment is soon and they can sort you out.

Please use our forum as much as possible, as we can support you further, lots of members on here have complicated problems... MaryF

[Hidden in reply to MaryF]

Hello Mary F

The Consultant I was under whilst in hospital wasn't on your list. He is Dr Neil Munro. Bit of a straight lace type of man but I thought he was very nice and certainly miles better than the Dr I had when in Margate hospital.. The thing that I do remember from there was that I thought he was shouting at me, trying to get me to do things like read the name of the magazine by my bed, read out the headlines but I couldn't and got upset...

What my hubby told me afterwards was that I had refused to wear my glasses in my confused state at home the two days prior to my admittance and I am very long sited, cannot even see facial features without my glasses!

But of course I couldn't convey that to the Dr... Hubby said that I was getting worked up when first moved to Canterbury as I kept saying it was my fault they moved me! As it turned out it was a better move in terms of my recovery but did mean a 40-50 minute journey every day for my hubby!

The Consultant I am now under who has an interest is APS patients is Dr Moran, also at Canterbury. Have only met him once so far. Again another nice man but he is the Dr who mentioned taking me off Warfarin. The Haematology Dr at Canterbury is Dr Elliott. But I have only met her once. Although both said they would see me in 6-8 months time which will be about March time!

Laura

[LesJames]

Sounds to me like you are a classic for having an increased INR level. You maybe on that already or are you on an INR of between 2 - 3, Some doctors do not believe that an increased INR helps and that the risk from a bleed is higher. INR at a higher does make a difference I know. Hope this helps a bit if any.

[Hidden in reply to LesJames]

Hello Lesjames

My Consultants have said they want my INR between 2 - 3, everything was going well for the first six weeks and then it started going haywire, dropping rapidly to 1.1 and then going too high, right up to 7.0, so was sent for a full blood test and Michelle my warfarin nurse at Margate phoned me a couple of hours later to tell me how much warfarin to take and she said that after the full test it was actually 6.0 so not to take any for a couple of days and see her on Monday!

This went on for about four months but, touch wood it has stabilised now and sits anywhere between 2.3 & 2.8 so AI have to take 4mg and they seem happy with those numbers. But of course I don't know when they intend to take me off it and that's what worries me!

Laura

[Fra22-57]

I think you have had a rough ride and still not come off it.I read your post to my husband and had to stop a few times as got choked up.some parts of it was slightly similar to mine and I am thankful I have improved alot.the memory,slurred speech,not getting right words out and rubbish instead.the jerking of body and tripping and right side throwing across to left.My consultant diagnosed me with APS in brain.My head pains he said was blood vessels closing in it.it was seven months after mistakes made at hospital before I got diagnosed and now on warfarin for life. I am on amytripyline to help me sleep. I have RA and Fibromyalgia too.

Your post makes me feel so greatful for only having these diseases really.

Don't go away.. keep posting your updates Laura.

[Hidden in reply to Fra22-57]

Hello Fra22-57

I am so sorry my post upset you.... I can understand fully how upsetting it is to read something and your mind flashes back in an instant and its like look at a mirror... I am sorry you have been so I'll but I hope you don't suffer too much...

Yes it has been a long difficult road... I see the Headache Dr at my GPs surgery and he said I have migraine tendencies... How can anyone have a migraine for 10 months 24/7, 7 days a week with the pain being anything between 8 & 10+ is beyond me! I told him that I have only ever had 3 migraines in my whole life and these headaches feel nothing like a migraine!!

I would love an answer to these headaches because they really do interfere with my quality of life! Every night around 9/10pm I go to bed, not necessarily to sleep but just to get away from the noise of the TV and having the frontroom light on! I don't even like the kitchen light on as that is too bright. The pain is literally on top and around my head where as the migraines are always across my forehead so I really don't know!

Laura

[Teacher71]

Laura!

You sound like an amazing lady, you keep on fighting and never give up! Your husband sounds like a wonderful man!

Stay strong and post long and lengthy updates as often as you can!

Take care

Tracey x

[Hidden in reply to Teacher71]

Hello Teacher 71, (Tracey)

Thank you... Yes he is an amazing Man... Been beside me all the way! I know he hates anyone being I'll as he doesn't know how to deal with I'll health, so he says! But he has been a tower of strength.

He is usually the quiet type I'm the gobby one so he jokes but during all this he has been great. Although he said that one day whilst I was in Canterbury, about 5 days into my admittance there he and my Sister came to visit and I apparently got them to draw the curtains and was whispering in a none too quiet voice and tapping my fingers saying ' I'll get there in a minute' and trying to tell them something that I couldn't quite grasp!

So of course now they both rib me over it and mimic me! 'Sods' still we have to laugh else we would cry!

Laura

[LauraKlumpp]

Hello Laura.....What a terrific name. As it happens my name is Laura and I am also 53. I have a doctor who also does not like warfarin and is trying to avoid it as long as possible. She has me on aspirin and Plavix for now. My problem is I have a history of stomach bleed so I have to take Nexium which can interact poorly with Plavix. It is a balancing act to find the right drugs in the right combinations since most of us with APS suffer from multiple things and not just the APS. I would encourage you to take it one day at a time. Post your frustrations here for support when needed as this is a great source of people who do understand our issues. You may want to share this sight with your doctor it could provide insights that may have not been considered in helping you. I pray you continue to recover and God helps your doctors to find the right treatment for you!

[Hidden in reply to LauraKlumpp]

Hello Laura,

Yes we do have a great name.. 😊 With Hubby's strength I am trying to stay strong and can only take one day at a time. I've had to miss out on a couple of family things because I just wasn't well enough to attend but am determined to be as well as possible for my Sister in Laws wedding in April in Wales! Unfortunately I had to miss her 60th as I wasn't up to the journey but as hubby needed respite I sent him with his other Sister for a few days and my own Sister came to look after me!

I hope they find the right balance for you with your meds, you are so right, it isn't easy, what works with one doesn't necessarily work with another! Even I double check my Dr on what they give me because of the warfarin now!

Laura

[Debbweb01]

Hi Laura I'm Debbie! I live in USA! I was recently DX'd in Octoner after loosing my leg to APS AND many neurologists MISTAKES! They said I had CAPS/ CATOSTROFIC APS! I've read this is so rare they do no studies on it! I'm having problems with docs here in USA! My sister want to take me to England! Lol... We did have an aunt there as my Dad from Penz Anz a Pirate for sure!!! I hope u get the answers you deserve! I go on Jan 27th to APS SPECIALIST/ Rheumotologist! I feel like he will b good for me and set me in right direction! He is only doctor in USA that has set up a clinic with many APS Specialists! It's just so he's in NYC and I shall drive there! It will take 30-40 minutes, as I live on Long Island! I had my first panic the other day, in over 5 years! I was so frightened had bad headache and felt off! My INR was 1.14 on 3 different blood thinners! I panicked cuff the thought of Wat if they never found this! Wat if I was on nothing what wud my INR be! I started blood clotting at age 24! Tia's after the birth of my only child, had him early with high blood pressure and bad headaches! I know you r frightened, just breathe and know u will make it to ur appt on the 28th! If u feel bad call ambulance and go to Hosp! Please don't take any chances! Talk to me anytime and we must get bak to each othe to C how our appts go with new docs! I'm lucky enuf to live close to NYC!!! GODSPEED! Welcome and I write long posts too! I'm a writer! Can't help myself! We welcome ur long posts!!! Just keep pushing and writing!!!