anna

Hi Julie, I have just read your post, with reference to the blood viscosity have you ever read about Hugh's syndrome?! "The symptoms are so wide-ranging, most of us probably suffer from one of them: migraines and headaches, memory loss, poor circulation, blotchy skin, tinnitus and earache, tummy cramps, DVTs, recurrent miscarriage, infertility, giddiness, visual disturbance, leg ulcers, seizures, and even mini-strokes (a transient ischemic attack or TIA) or a diagnosis of MS. But if you've been reading that list and have ticked off more than a couple, it is highly likely you could be suffering from a syndrome that's not only extremely common ? affecting about one million people in the UK ? but which is under-reported, misunderstood and dangerous to ignore, despite being simple and cheap to screen for and treat. Now, thanks to a new book that outlines 50 different case histories, anyone who may have this condition, known as Hughes Syndrome, can learn if they are at risk, and go armed to their GP to demand the blood tests that will put their minds at rest." This was taken from an article in a UK news paper. http://www.telegraph.co.uk/health/4400796/Hughes-Syndrome-simple-to-treat-but-all-too-often-ignored.html I am sorry to see you have had some worrying results come through, my thought on the DD issue is to question if the results are pointing to DD or are they just reaffirming how mucked up our bodies are! I have been on CC blockers for many years now and do not have too many problems with them but when I have been without them for a week or so my Angina type symptoms and migraine return with vengeance, this has lead me to believe that vasospasms may have something to do with my symptoms, I am still working on why all the vaso spasm's though!!!

We have decided to try and find a Dr. that will listen to my children about neck issues as we really think that this might be the key to the many symptoms my children and I have. We took my daughter to a Osteopath once not a good move made her feel so ill after. Oddly enough my daughter felt really ill after having Acupuncture to relax her neck muscles, I wander if that might point more to instability as when her neck does relax she gets more symptomatic. Maybe as her neck alignment becomes more precarious as her muscle are no longer able to hold things together!!

Hello nowwhat! I am starting to think up a Abbot and Costello like sketch here now!!! "You nowwhat, no that would be the old me now it is whatever, whatever next, yes that's right! Sorry could not help that! Regarding the neck instability issue, my children's main EDS problem is their unstable necks, but we can not get any Dr. to look into this, they are just not listening to me or my children when they say their neck feels like it is 'out' and they have odd symptoms etc. Dr. seem to think necks can only be unstable due to major trauma and that my children are too young for any thing else!!!

Any chance whether you know if this poor lady has been evaluated for possible Multiple Endocrine Neoplasia?! MEN1 is a very rare condition that can affect men or women at any age. Although it tends to be an inherited condition, known as familial MEN1, it can sometimes occur in people who do not have any family members diagnosed with it and it is then known as sporadic MEN1.

I am not sure if this would be possible for consultants in Ireland, but when trying to find a new Cardiologist for my daughter, I did a DR. Fosters consultant search, then I wrote or emailed any that looked like they were up for a challenge!! I found a guy near my daughters UNI and asked him if he might be able to help! He said he might and was more than happy to try and help, so fingers crossed!! Might you be able to find someone this way?! Also the waiting list to see Prof. M is sooo long daughter was referred to him over 9 months ago and we were told he has a very long waiting list, that is for sure!!!

Hi Sue, Two of my children have had some sort of blood test to see if they had IBD, but that was negative, I am not really sure if that is a conclusive test for celiac disease. Hi Julie, When my daughter was about two and a half she was prescribed Nalcrom, we where told to give it to her when she wanted to go to a party and might have some food that usually effected her badly. As it was given as a take on special occasions type thing I guess we did not see much benefit! But as my son's GI problems are back big time we might ask and see if the GP will try this med out on him.

Hello Julie, Oh CEDS is classical EDS and HEDS is Hypermobile EDS (Ehlers Danlos Syndrom. We are not sure about the whole allergy type problems all three have a milk/dairy intolerance. It seems to be an intolerance not true anaphylactic type response. Daughter had constant colic distended tum, failure to thrive, bile ridden diarrhea, any time I feed her or when she had formula milk. Of cause Dr. thought I was mad and that she needed more feeds!!!!! She is 18 and still can not tolerate any milk products, but can eat some things that contain reconstituted milk proteins. From birth my twin boys were put on soya bottle feed as daughter had such problems, they too can not tolerate any milk products, like thier sister. All 3 have had odd reactions to certain foods all have Hay fever, used to get hives for no apparent reason sometimes after eating a meal other time who knows why!! My daughters GP has her on Telfast (Fexofendine hydrochloride)high dose when needed, due to her getting a swelling throat out of the blue, now one of my boys is having same throat problems. We do not have many allergy Dr.'s in the UK so we have never been sent down that route, no surprise their !!! I am still in the mind that EDS or genetic mutations in the formation of collagen is the key here I still think that folk with dodgy collagen are more likely to leak more!!! Like gut wall is more easily penetrated by invaders, thus triggering some form of Autoimmune response, same goes for our nervous system, infact I feel that stuff that would normally be locked out of a system path way is breaching our natural barriers because it is getting through the areas of defective collagen. In my view that is the reason not all people with connective tissue disorders have other things going on as well, it comes down to where we are genetically predisposed to having weakened defences! Again I see the same thing going on in ASD. As for the question why do not all folk with ASD or Mast cell disorders have connective tissue disorders, I would say they probably do have some form of connective tissue disorder but it just has not been mapped yet!! does that make sense??

Shall I complicate matters even more?!! OK here goes! I have one son diagnosed high functioning Autism, a daughter with ASD traits and OCD, my dad had major ASD traits, my brother is self diagnosed high functioning Autism. They all have EDS, my dads family had it's fare share of ASDers and guess what they all had CEDS!! My mums side of the family HEDS also had it's fare share of let us say excentrics and many of them have allagies, my mum is very very chemical sensitive I am to a lesser extent. My children are all milk intolerant and have environmental allagies!! I know their seems to be a EDS Masto pattern emerging but not sure if any ideas why this might be happening, but I am sure one will be found some day.

Another thing that might be of help is leg massages, leg exercises, when my daughter was bed bound we found that the leg massages helped give my daughter some much needed energy. We found that slowly slowly working on body balance, seemed to help with her mental state.

Dear Julie, Thank you so much for your post I will pass it on. Sorry that your poor son has to deal with such things too. Anna

Hello All, I have a question for any of you who have bowel dysmotility and EDS, how has it been treated?? A young person on another site has just been told this: Test results show that I have no muscle tone, severe nerve damage and no pressure in my bowel. He has given me two options to consider: 1. End ileostomy 2. Peristeen Anal irrigation - for a trial of 3 months Any ideas on possible alternative to this? the surgergen is not at all interested in the fact that this person has EDS by the way!

Mary P, Yes that article relates to a pregnant women, I can not find any other pier reviewed article it's a pain. One of my son's is due to have his adenoids out again (yes again) and have some other work done on his nose. We have postponed this op for a couple of years now as my son has such bad reactions to even local dental anesthetic, he gets bradicardia then major tachycardia. When he had his tonsils and adenoids out at 3 they could not wake him up. We are desperately trying to find some written protocol for ANS dysfunction folk, so that we can give it to the anesthesiologist.

Hi Mary P, I just found this article on anesthesia in a POTS patient: Oxford JournalsMedicineBJAVolume97, Issue2Pp. 196-199. Expand+Anaesthetic management of a parturient with the postural orthostatic tachycardia syndrome: a case report W. L. Corbett1, C. M. Reiter1, J. R. Schultz1, R. J. Kanter2 and A. S. Habib1,* + Author Affiliations 1Department of Anaesthesiology, Box 3094, Duke University Medical CenterDurham, NC 27710, USA 2Department of Paediatric Cardiology, Duke University Medical CenterDurham, NC 27710, USA *Corresponding author. E-mail: habib001@mc.duke.edu Accepted March 13, 2006. You can read the full article for free on the net, I wander if you could email these guys and ask them if they have any info on anesthesia protocol for POTS patients!!

I just read the post on hyperreflexia and it got me thinking as to why my children have poor to no reflexes might this be a clue to what is going on in our family? One of my boys has NO gag reflex the Dr. doing my son's GI mobility test was well shocked he said he had never seen anyone with no gag reflex like my son and he has done esophageal manometry testing for years!!

Thanks guys, yes I think she will have to learn to respond sooner to her SVT's and thanks Flop I will look into the blowing syringe method, it would be the more practical than the legs up she was told to do by her old GP.

I guess the main problem with my daughter is that she gets very disoriented when like this and tends to need prompting to use a counter maneuver, her friends just tell her to do what ever and she does and that has been that so far!! I really do understand the whole not having to realiy on others as this is so important for independant living full stop. We are still trying to find my daughter a new cardio she has just moved into adult services and her paed. cardio is no longer involved in her care, so he can no longer discuss her care with us!

Ok guys need your help again! My daughter is due to start Uni in Sept, but the disability assist folk are a little concerned about my daughters odd spells of SVT's, partly my fault as I explained that daughter usually gets her friends to help her with a vasovagal maneuver, now Uni are concerned that this will be asking a lot from her dorm mates!! So what if anything could you folk suggest we do that might help the disability assist guys feel more happy with this!!

Yes get it checked, but do you mean fluid like phleme that makes you want to cough a lot in the morning and you bring up sticky white stuff or do you mean you can not breath well and have a heavy chest that makes you cough?! Do you have edema in your ankles, arms ect?! With the bed if you can put 4 inch blocks under the legs at the head end of your bed, you might find tha helpful, as you will not need to be able to bend in the middle!!

I have seen the cooling vests on Ebay? I am looking to get one for one of my boys. Are you any good with a sewing machine, may be you could make yourself some designer cooling gear!! or could you get get someone to make you something. Sorry not too helpful, one of my boys is having heating problems at the mo, well for the last six months or so he has had bouts of over heating big time, especially when he is laying down!! we are trying to sort this out by plotting son's temps/ symptoms for the next few weeks, as GP wants to see if he can see what path way this is coming from. Until then we are stuck as to what might help him.

It seems to be standard practice, here in the UK that with episodes like this neurologists recommend a video diary, any chance you could get someone to record these episodes for the next few weeks?! Most times a good neuro can have a good idea of what is going on, when they watch the episodes for themselves. Have you looked into Narcolepsy and Catoplexy? Does any of the following sound like your symptoms? What is narcolepsy? Narcolepsy is a malfunction of the sleep/wake regulating system in the brain which until recently was of unknown origin. Its most common manifestation is Excessive Daytime Sleepiness and sleep attacks. The other conspicuous symptom is a sudden loss of muscular control triggered by amusement, anger or excitement which is called cataplexy. Other symptoms of narcolepsy are: ?Temporary paralysis on falling asleep or awakening (sleep paralysis). The periods of paralysis are usually brief - a few minutes - but can persist for up to 30 minutes. Episodes of sleep paralysis may alarm patients, particularly those who experience the sensation of being unable to breathe. ?Hallucinations - vivid images or sounds - on falling asleep or awakening (Hypnagogic and hypnopompic hallucinations respectively). These hallucinations frequently combine elements of dream sleep and consciousness and are often very disturbing to patients. ?Moments (but sometimes extended periods) of trance-like behaviour in which routine activities are continued on 'auto-pilot' (Automatic behaviour). ?Interruption of night-time sleep by frequent waking periods, marked by quickening of the heart rate, over-alertness, hot flushes, and agitation. This disturbed sleep can contribute to a feeling of tiredness in the morning.

Hi Anna, I read your post and wanted to know which CCB you are on. I also have super high b/p readings and possible variant angina. (Prinzmetal's). I've tried both the Norvasc and Cardizem CD in the past. I get spasms all the time not just in the chest area. If you wouldn't mind sharing your info that would be great. I was just concerned for myself since I read a study (I know they are all biased and not reliable) that women over 50 have a higher risk of heart attack and breast cancer on them but at this point I know I need something to control the b/p ,tachy and spasms. Hi Rene I am on Amlodipine 5mg : GENERIC NAME: amlodipine BRAND NAME: Norvasc So it looks like the same med you have had before! To be honest I think taking any meds come with a down side, but I was getting to the point that I felt like I was having a heart atact most days, the CCB have stopped that. I did not read the study on CCB's and higher risk of breast cancer and heart attack in the over 50's females. will look into this.

Ok my children had an appointment with their cardio yesterday and he has refered them to Professor Mathias in London, as he thinks Prof. M may have some new ideas that might help my3. Anyone out there been to this clinic lately, I am not too sure if we really want to travel again to be fobbed off again. Does anyone know if GP's in the UK are allowed to try out meds without a consultants say so?!!!

Ok this has made me think about the whole POTS diagnosis!!!! My children still and have always had a HR in the low 40's to mid 60's while spine or while sat and fidgeting, but on standing or staying still their HR go up into the 90's when they walk around it goes up even more any cardio stuff and their HR go 170+ within seconds, is this a normal POTS thing. My children all do dance and physio and are well conditioned, muscle wise.

Hi Rach, Myself and my children were first put on Lanzoprazole but it just did not work, so we were put on to Omeprazole that actually worked for us, that said when we have bad bouts of GI stuff my son and I have needed to have very high doses for a week or two. Pitty about the apples. I wander if your GI problems might be down to the B12 deficency now, I have just looked up some of the symptoms of B12 deficiency, wow I never thought about it before but I wander how much is ANS related and how much might be a deficiency thing, my kids are due for a blood test so better get some more detailed ones done this time!!! About vitamin B12-deficiency anaemia You need vitamin B12 for many important processes inside your body, particularly for making red blood cells and keeping your nerves healthy. If you have a short supply of vitamin B12, your body won't make as many red blood cells, they will be abnormally large and won't last for as long as they should. If you don't have enough red blood cells, the tissues and organs of your body may not be getting enough oxygen. This leads to the symptoms of anaemia. Symptoms of vitamin B12-deficiency anaemia The symptoms of vitamin B12-deficiency anaemia include: feeling very tired breathlessness after little exercise palpitations - the sensation of feeling your heartbeat thumping in your chest headaches a reduced appetite a sore mouth and tongue If you have vitamin B12-deficiency anaemia, you may also look pale or jaundiced (have a yellowy tinge to your skin and the whites of your eyes). As well as the symptoms of anaemia, vitamin B12-deficiency may cause symptoms related to your nerves. This is called vitamin B12 neuropathy. It may affect your movement and sensation, especially in your legs, cause numbness or 'pins and needles' and decrease your sensitivity to touch, vibration or pain. It can also cause confusion, depression, poor concentration and forgetfulness. These symptoms aren't always due to vitamin B12-deficiency anaemia but if you have them, see your GP. Complications of vitamin B12-deficiency anaemia If vitamin B12-deficiency anaemia isn't treated, there are a range of possible complications. For example, it can affect your movement and co-ordination and cause confusion and memory loss. It can also put you at risk of heart problems. Ask your GP for more advice.