May 23, 2013 at 5:35 pm #449
I’m pretty desperate for help – can you guys help point me in the right direction to go now? First of all I want to say a huge thank you for Dr Diana as your videos and just you. You are amazing. I found your videos about EDS on you tube by accident and it was the first time when I thought hang on…this sounds like me! I seem to be more fortunate than many in my diagnoses so far, but I’ve reached a stalemate again and even my private doctors are confused about what to do next. I am very poorly – have been bedbound on and off for 4.5 years now. More on than off sadly. Anyone who manages to read all this is an angel I swear. Sorry but my problems are so complex with like 1 billion symptoms!
Going to post this in more than one part – probably stupid as no one is going to have the time to read it but cant cut out more i dont think! Aaah. Sorry but I’m desperate right now as im so behind on my course.
My early childhood:
• I have always had an indentation in my skull at top of my head.
• Walked at normal age. But definitely bright over achiever.
• I was diagnosed with asthma, hayfever, and eczema when i was 3.
• Nose bleeds for well over a decade.
• Always clumsy.
• Always tired and afraid of too much exercise, but would push and do the things I enjoyed anyway.
• Joint pain put down as growing pains more than once.
• I always remember was hypermobile but not realising it was abnormal until I later realised. I was also a gymnast and did yoga and varying points, but am slightly more flexible. However, I probably only score between 4 and 6 on the beighton scale. Family history of double joints, including a cousin who needed therapy to help him walk. I have often done things wrong which were pointed out to me at the time like holding my pen weirdly due to discomfort, doing handstands on my fingers not the palms of my hands, being able to clap my feet with my legs straight, touching forehead with feet, prayer position behind my back, and if I sit crossed legged I can put my face flat on the floor. etc.
• I always hated bright sunlight because it made my eyes hurt.
• High school years:
• When I was 11 the dentist found that when I had teeth removed I needed 3x the local anaesthetic for a fully grown man and it lasted ¼ of the time it should.
• I got my first period at 12 years old, it was heavy, painful, and they soon became very bad. At 15 after trying everything else I was put on the combined pill which made everything better to begin with. I was told to do it back to back so I only had 4 periods a year (yay!) Until I started getting galactorrhea (making breast milk – sorry folks!) in my pill free week and my prolactin levels were checked several times and were all normal. I stopped the pill 5 years ago but this symptom hasn’t gone (im 26 now.)
• I needed a brace and teeth removed because of small mouth.
• When I was 14 my jaw started locking and later dislocating on one side when I would yawn or eat chewy foods it would click. I went to the GP who told me “Thats a good party trick” and it was never mentioned again. I eventually figured out how to put my jaw back in my massaging the tmj joint – not that i knew what it was at the time. I eventually grew out of it after a few years. It still pops when i yawn but nothing serious.
• 14/15 I got diagnosed with scoliosis due to back pain when trampolining and horse riding. (Later when I was in med school the students could barely find it, so I assume the curve is barely there now.)
• I used to sprain things all the time, especially my ankles, but nothing dislocated other than my jaw.
• During my teenage years I was falling asleep in class, after school, and after exercise. It was put down to allergies (as I refused to give up horse riding despite being allergic to horses and hay etc…) and eventually when I was 17 I was found to have low iron (put down to my miserable periods.)
• My allergies were really bad – grass, pollen, cigarette smoke, animal hair, mould, feathers, certain foods/nuts, washing powder, perfume, smells would give me asthma/sneezing and headaches. If I rubbed my eyes with pollen etc they would swell shut. I went to a allergy specialist who diagnosed me after skin prick testing aged 17with year round allergies (perennial rhinitis) and oral allergy syndrome – my mouth/lips was swelling up and my throat getting very sore whenever I ate certain raw fruits and nuts which my body thought was silver birch pollen. So I was advised to avoid these and I eventually went on zyrtec (a year later) which helped. I used to get wheals on my arms when i was scratched my cats or get food i was allergic to under my skin.
• I had a huge problem with heat and cold. I would go shopping in the winter, and find that I hated it because the stores were too hot and the shops too cold. I don’t sweat properly, so my skin gets very hot and i get very weak and nauseas when hot. The only thing which sweats is my hands.
• My sleep was mostly okay during my childhood and didn’t have much problem sleeping and sometimes had trouble staying awake. I would have microsleeps and fall asleep for a few seconds and have dreams every time.
• I used to get bowel pain which i thought was kidney pain at the time – it was on the front not back but it was around the same area in my terminal ileum and i had to bend double until it went away.
• At some point I started needing to drink more and also I had problems if i didn’t eat. I couldn’t survive without breakfast otherwise i would feel faint.
• I followed the fad which my bio teacher encouraged aged 17 of not using salt in food at all. Big mistake!May 23, 2013 at 5:37 pm #3674
• 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.
• 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.May 23, 2013 at 5:38 pm #3675
Breakspear 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.May 23, 2013 at 5:42 pm #3676
This 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 xMay 24, 2013 at 12:36 am #3677
Wow, you have been through a lot. I am new to the site as well. I myself have not been diagnosed yet with EDS either and am waiting for an appointment in September for the Rheumatologist. I don’t have a lot of EDS knowledge, I am learning as I go, but some of the things you are going through caught my attention and so I thought I would throw some things out for you to think about.
Crohn’s can lead to vitamin b-12 deficiency, that in and of itself can cause a large number of neurological and autonomic symptoms that might be a good place to start and eliminate that as a possible cause of some of your symptoms. Your doctor can test for that. Even if it comes back normal from what I read they can be false normal and a more sensitive test may need to be done. You can get vitamin b-12 sublingual tabs that you melt under your tongue, trans-dermal patches, or injections.
I may be dealing with this from the PPI I have been taking for so long. I have started having a lot of weird symptoms that the doctor want to send me to a neurologist who specializes in Myasthenia Gravis, which is something else for you to look up as a lot of people Crohn’s can end up with Myasthenia Gravis too.
“Vitamin B-12 deficiency affects the nervous system, leading to a variety of symptoms. Sometimes, these may be apparent before symptoms related to the anemia. Neurological symptoms vary and may be nonspecific (meaning that these are symptoms that can be caused by a number of different conditions). Feelings of numbness, tingling, weakness, lack of coordination, clumsiness, impaired memory, and personality changes can all occur. Both sides of the body are usually affected, and the legs are typically more affected than the arms. A severe deficiency can result in more serious neurological symptoms, including severe weakness, spasticity, paraplegia, and fecal and urinary incontinence.
Symptoms of anemia are due to the reduced oxygen-carrying capacity of the blood. Shortness of breath, fatigue, dizziness, and pale skin can all occur with anemia. In anemia, the heart is placed under stress since it has to work harder to deliver enough oxygen to body tissues. This can result in heart murmurs, fast heartbeats, arrhythmias, an enlarged heart (cardiomegaly), or even heart failure. It is important to note that not all people who have vitamin B-12 deficiency and neurological symptoms will also have anemia.
A deficiency of vitamin B–12 can also alter the surface of the tongue, making it appear shiny or smooth.
Finally, sometimes pernicious anemia is diagnosed in a patient with no symptoms. In these cases, it is usually found incidentally when blood tests are ordered for another reason.”
http://www.b12patch.com/about-b12deficiency.html symptoms list
http://www.cdc.gov/ncbddd/b12/table1.html cdc symptoms list.
Seizures and b-12 deficiency.
I hope this information helps,
RebeccaMay 24, 2013 at 12:38 am #3678
Here is information on Myasthenia Gravis
“Myasthenia gravis can affect any of the muscles that you control voluntarily. It can affect muscles of the face, hands, eyes, arms and legs and those muscles involved in chewing, swallowing and talking. Muscles that control breathing and neck movement also can be affected.
MG does not affect involuntary muscles such as the heart, smooth muscles of the gut, blood vessels, and uterus.
For most people, the first noticeable symptom is weakness of the eye muscles causing drooping eyelids or double vision. In others, difficulty in swallowing and slurred speech may be the first signs. The onset of the disease is usually gradual, but may be sudden. Symptoms may come and go over time. Symptoms often are not immediately recognized as MG, especially if they are subtle or variable.
Symptoms, which vary in type, severity and combination, may include:
Drooping of one or both eyelids
Double or blurred vision
Weakness in arms, hands, neck, face or legs
Difficulty in chewing, smiling, swallowing or talking
Excessive fatigue in exercised muscle groups
Difficult breathing or shallow respiration
Most individuals do not develop all of the symptoms.
Myasthenia gravis is often called the “snowflake disease” because it differs so much from person to person. The degree of muscle weakness and the muscles that are affected vary greatly from patient to patient and from time to time.
While weakness in the eye muscles is the most common initial symptom in MG, in some patients weakness remains limited to the eyes for entire course of the disease. These patients have ocular MG. Others have generalized MG where symptoms are present throughout the body, usually including the eyes. For instance, it may be hard to hold up an arm to comb your hair or shave or put on make-up. With a weakened grip, it may be difficult to open jars. Weak hips may make it difficult to get out of deep chairs or the bathtub. Legs may tire when climbing stairs.
People with MG are more likely to suffer from another autoimmune disease as well. These can include thyroid disease, lupus, rheumatoid arthritis and diabetes. With thyroid disease, an episode of hypothyroidism may trigger a flare-up of MG weakness.
If a person’s ability to breathe, cough, or protect their airway becomes insufficient, it’s called a myasthenic crisis. These patients need mechanical breathing assistance in a hospital for a period of time until their strength improves. While most myasthenics never experience a crisis, those who have trouble swallowing and talking are the ones most likely also to have trouble breathing. Before a crisis happens usually there are progressive warning signs that swallowing, talking, and breathing are becoming compromised.”
I hope this information helps,
RebeccaMay 24, 2013 at 1:30 pm #3679
Thank 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.
LauraMay 24, 2013 at 2:17 pm #3680
I think it is a bit more of an intensive investigation than just a blood test, and it is not limited to only the eyes, although there are thoughs who do tend to have their eyes effected more than other parts of the body. I dont think blood test are the only conclusive test done to rule it in or out.
I am glad to be of help,
I hope you are able to get the answers you need.
RebeccaMay 24, 2013 at 2:22 pm #3681
Thank you. I will definitely mention it to my private doctor next time I go and make sure it is something they ruled out
LauraJune 6, 2013 at 2:15 pm #3718
My doctor has agreed to prescribe diamox – happy!
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