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LauraParticipant
My doctor has agreed to prescribe diamox – happy!
Laura
LauraParticipantThank you. I will definitely mention it to my private doctor next time I go and make sure it is something they ruled out
HUGS
Laura
LauraParticipantThank you Rebecca, you are a star! I really appreciate all your research into this. I had a look at your links and a good think. Regarding the b12, I have had that tested many times and it was always normal. My private hospital have even treated it regardless but it didnt help at all. I had bloods done recently – admittedly on the nhs so not necessarily as good, but my b12 was within the normal range and quite high actually. Much nearer too high than too low. Will keep an eye on it though in the future. I know a very disabled bed bound person completely cured with b12.
Regarding the MG. Very interesting. It is something i heard about at med school and im pretty sure with the extensive bloods and they have found nothing. No lupus etc… And my eyelids dont do that as far as i know.
However, I will definitely keep an eye out for any new symptoms that may resemble these diagnosis as they are quite apt!
HUGS HUGS for your time and I hope you continue to have luck in your search for answers.
Laura
LauraParticipantThis is the last part I promise!
The problem now:
• I am stuck in bed and have been since oct.
• A few months ago i thought i realised many of my friends who had problems with certain drugs not working and ME had since been diagnosed with EDS. I did some research – and thanks to dr diana’s vids, I told my GP and he has referred me to London to a rheumatologist but the appointment is not for 3 months.
• However, I am worried I will be wasting the drs time because I only score 4-6 on the beighton scale and i don’t dislocate or have that major skin problems. My joints snap crackle and pop and I have problems with my neck and knees that sometimes they feel out of place and i have to wiggle to get them to feel right again. (when they click.) The veins in my wrists and hands are very visible. I think I may have thin skin. I would like to query whether my skin is more stretchy than normal. Although if it is abnormal it will only be mildly. I have a lot of stretch marks but have never been overweight. I do have piezagenic papules on my feet.
• I also have problems with pins and needles (bottom of my left foot has been there for 3 years and lessons when i stretch my foot up. I have intermittent problems in other places though.
• I am getting occipital headaches on and off and i have always thought they were due to dehydration – if i don’t drink enough then i get cystitis symptoms, bladder and kidney pain, dry lips and headaches which improve with water. But sometimes now water doesn’t help.
• My bladder is huge and will hold 2 litres but sometimes i have urgency and incomplete emptying.
*I now have symptoms of Raynaud’s as well as the erythomelagia.
• My sleep keeps going out the window. I have melatonin to remind me when to sleep, but if i do too much physically or mentally then I will not sleep. If I sleep often i wake up several times and cant get back to sleep again – often for up to 8 hours. Also being uncomfortable due to pins and needles or joint pain or period pain has hurt things in the past. However, some nutritional supplements, herbs etc, and putting the head of the bed up has helped with these problems and now although i wake up i do get back to sleep again yaY!
• I am also having problems with getting extremely tired after eating “Too much” which is now just childs portions. When I eat too much I got paralysed with fatigue, nauseas, bloated, sometimes sharp stabbing pains in stomach, cramps, heart rate of 160 on standing 140 on lying down. Mine is usually about 80-120. Despite having a stricture in my terminal ileum, the diet and LDN, and the pills from the doctor seem to keep my Crohn’s in check.
• Currently on round 7 of iron pills.
• The private doctor keeps thinking i have an infection and they have missed it and they keep looking, but all the tests i have both now and 4 years ago have been neg for infection and it is costing me a fortune to keep looking. He agrees I may have eds now but is refusing to see me until he can figure out what to do for me. (this was months ago.)
• Periods are also still bad, but evening primrose oil is helping.
• I have been reading the driscoll theory part 1 and want to read part 2 but i cant find it on amazon.
• I would consider trying zytec again but as my family and i between us have paid literally tens of thousands on tailored personal allergy treatments and i now have a daily immunotherapy which only works if i don’t take antihistamines im reluctant to do anything there.
• Considering asking them about mast cell problems, but im not sure if theyd know anything about them. I also don’t know if i fit the picture of mastocytosis anyway.
• Also when i tried omperazole for GERD, im pretty sure it made me vomit so i stopped it and it went away on its own because i could sit up more. (At one point they thought i had an ulcer.)
• Also I don’t know if i fit the picture of increased csf as my mri was normal, my mum thinks that my childhood head span was normal too.
• So I don’t know what i can do to help myself right now – scared as im 6 weeks behind on my uni course i do from my bed.
• I know the private hospital has fixed some things – hair and nails are better, brain fog improved a lot but has since got worse again and my stamina and strength also improved but went again. My heat tolerance has improved and it doesn’t wake me up as much, but i still cant share a bed with someone. I spent 3 years without a single infection, but after treatment, I started getting colds again which made me worse.
• I have a family history of hernias (hiatal and inguinal), vaginal prolapse, osteoporosis, osteoarthritis, cancer, stroke, ASD, IBD, Atopy, dyspraxia, miscarriage, heart disease, indentations in skull on top of head (I have this), TMJ problems. joint pain due calcification, hypermobile joints.Yeah so that’s me. Any help would be gratefully received and I will give virtual cookies. Also really willing to help anyone out if I can as I realise I have had more luck than some with getting diagnoses so if anyone wants to ask any questions just ask away.
Laura x
LauraParticipantBreakspear private hospital
• So I went to a private hospital when i didn’t get any better. They did tests and found hypocapnoia was causing the myoclonic seizures – 24mmhg instead of 39-45. They diagnosed me with POTS, dysautonomia. They also found severe malnutrition and evidence of leaky gut –so i was put on stuff like vit c(practically had scurvy) they found inflammation which later turned out to be Crohn’s disease –diagnosed 2010. Low blood pressure. Crazy strong reflexes especially on my legs and stomach. Blood tests showed I was making bone slower than the rate I was loosing it so I was at risk of osteomalacia. (but no dexa scan.)Candida. Mitochondria not working well. Chemicals in body.
• Treatment – co2 which helped with the seizures, immunotherapy for allergies – i had to come off all antihistamines as a result. It helps with some of my allergies. Nutrition and diet. Flurocortisone for POTS which lowered my pulse. Lots of salt. Anti candida diet and antifungals.
• I was given an MRI because of the water hunger but it was normal.
• In 2010 I got diagnosed with Crohn’s after a colonoscopy and was put on steroids. When I had the colonoscopy the conscious sedation didn’t work for me. When I came off the steroids the private hospital put me on a no grain, no sugar etc diet and low dose naltrexone. (LDN was a miracle in may 2010 it got me out of bed for the first time in 19 months. EVntually i got to the point where i could walk 4 miles a day (even though my limit had been 20 metres for 1.5 years!) Various things such as infections, my sister dying, and overdoing it (kayaking) have put me back in bed since.
• The only problem is now the doctors are running out of ideas.
• I ended up in bed in October and i am still having problems. My wisdom teeth are partly to blame as they were giving me constant infections and have finally been removed but im still having problems. The surgery was a general as they know that the sedation doesn’t work. The local wore off quickly but the general worked as it should have no problems. The surgery itself was also good – i healed well.LauraParticipantAdulthood:
• I made it into med school by some stroke of luck and struggled on.
• Sleep got worse and I became insomniac for a few weeks in year one with anxiety and panic attacks but I got rid of those within a few weeks. Once these had gone I was fine again.
I was having trouble getting exhausted though and would need to crash.
• In year 2 I went to Egypt and when I returned I had gastroenteritis and diarrhoea which never went away after 6 weeks. I was told I had ibs and treated for it but it didn’t work. When later bloods found a raised ESR I was told Crohn’s was likely and I began to get very weak, having difficulty walking, feeling very hot, having joint pain worse than usual etc and i went into hospital for 3 days. They did a sigmoidoscopy which apparently missed the crohns as i was diagnosed with ibs again and found to be iron deficient again! So more iron pills.
• Eventually I stopped sleeping very well due to worry id fail my exams because i was sleeping 15 hours a day. The insomnia, depression, and anxiety kicked in for a few weeks and i was given a 3 week course of zopiclone to get me through my exams. It didn’t work and i was still only sleeping a few hours so i was given beta blockers, which made me feel very spacey but worked.
• I went to Ecuador a few weeks later and getting away from everything helped. I was cured by the time I came back and haven’t suffered any mental illness since really (thank God!) I did however have a few flu like illnesses when I was out there volunteering. I also got bitten by horse flies at one point and had massive swollen reactions on my legs which itched and hurt and made me exhausted and unable to sleep. At this point i would usually sleep fairly well or have the occasional night where i just couldn’t sleep. At the end of the 2 months i caught tonsillitis – 3 infections in 2 months – so unlucky! I was still having some diarrhoea still but that had also improved with time. I became exhausted for a while after and they suggested post viral fatigue.
• I had to repeat year 2 because i failed one of my exams. Year two went well to begin with but eventually i began to get much worse. I was always exhausted, had a headache, had bad joint pain, bad muscle pain which got worse the more i did – a lot of walking left me with twitching burning legs. Accupuncture and Chinese medicine helped somewhat and i eventually started doing less because my mum was helping so much with sending me meals and doing my washing and was sleeping so much. After overdoing it my body would hibernate for 21 hours a day. I would also get told off for forgetting stuff and get laughed at when my brain would go blank. I also got told off for yawning in classes and regularly would start falling asleep when in a dark warm room! I’d try everything to stop it but nothing!
• Eventually i passed year 2 somehow and went into year 3 which was mostly clinical years. I was given a diagnosis of CFS by an immunologist and because i was very dizzy told to put salt back into my diet – miracle! Helped so much! I had a synacthen test which was normal. At first i was doing really well and loving it but it didn’t take long for me to get an infection and that was it. 3 months in i had to stop because i ended up in bed and never got out again.
At this point my sleep cycle got out of whack. I ended up in bed for the next 6 months with severe fatigue, severe brain fog, not so bad pain because i wasn’t doing anything, fasiculations of my muscles, myoclonic jerks, troubles with light/sound/surprise of any kind,.
• sleeping very badly – dreaming all the time and even having lucid dreams, sleep paralysis. (stopped sleeping on my back due to the paralysis which went away eventually.)
• At one point I started having myoclonic seizures. (Doing too much (pushing mentally or sitting up too much triggered it.)
• I had to teach myself to walk properly again as i has sciatica which fortunally went away and did not return.)
• I also was drinking 7 litres of water a day, losing weight. I was practically underweight despite a healthy appetite and eating lots.
• Waking up every 5 mins to pull layers on or off. When I would get cold i would curl up in layers and feel low and slow until i warmed up. Hot was anxious and I would collapse and be too weak to move with hot skin. The only thing which cooled me down was ice. I would get hot swollen feet which would hurt and be red and veiny (I think erythromelalgia.)
• Constipation and during my periods diarrhoea.
• Hair loss.
• Bleeding gums. Bruising.
• Clumsiness.
• Acid reflux diagnosed by gp due to eating lying down no doubt.
• Hypoglycaemia type episodes with shaking and everything but no evidence of lowered blood sugar, would pass if i ate.LauraParticipantHi I can’t find the Driscoll Theory part 2 either – it has disappeared from amazon. I was hoping to buy it as an e book so I can read it as soon as possible. Although the paper book seems to have disappeared too.
Found part 1 and read i just now – very interesting. Thanks for all your hard work Diana. You are amazing.
Laura
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