Hi.This is my first post. Firstly I apologise if this ends up being quite long as I have had a range of symptoms for 6 years now. Just so you know, one thing I have NEVER suffered from is hypochondria! If anything I feel bad for bombarding my dr with my list of ailments. But my problems are very real and have had a dramatic effect on my life, before this started I was a normal young woman and now at 25 I am increasingly dependant on my mother and am rarely able to leave the house. Here goes;
At age 19 I developed a severe lower back pain that started worse on the left side and went down my hips and legs. I had suffered episodes with back pain since age 13 although I'd never had an injury, but this time was much worse and didn't go away, spreading further up. A few months' later I developed bowel problems mostly cramps and constipation but again I wasn't worried as I'd had cramps before and always put it down to IBS. Again the problems didn't go away but got worse, causing diarrhoea, occasional blood in stools, fissures, piles, stomach pain, acid reflux, nausea, vomiting, weight loss (I currently weigh 6.5 stone despite trying to eat a normal diet.) I sometimes have 'attacks' of pain+ vomitting that can last for days and cause me to bring up green bile. I had a colonoscopy and endoscopy a few years back, both showed nothing unusual. I started getting numbness and pins and needles/burning sensations on the outside of my thighs esp. when I was physically active. I saw a neurologist about 3 years ago who said this was 'consistant with bilateral cutaneous nerve disturbance' and noted that an MRI I'd had of my lower back showed my spine to be 'absolutely straight without the normal lordosis' he said this could be due to extreme muscle spasm or something else. He said my symptoms were 'nonspecific and probably unrelated' and didn't order any further tests. By this time I had also developed shooting pains in my left wrist and would sometimes drop things without warning, usually with the left hand. Blurred vision, difficulty focusing. Low blood sugar (hypoglycaemia) a few hours after eating which is eased by more eating but tested negative for diabetes. I believe this may be a secondary symptom of the stomach problems. My bowels are now incontinent and I have difficulty emptying my bladder completely. Heart palpitations or 'flutters' sometimes with chest pain. As time has gone on I have developed increasing fatigue, tiredness and weakness. This has been a gradual decline although I have noticed it is worse in the summer. I now have to spend most of the day in bed.
More recently I have developed a constant ringing in my ears which is worse on the left side and when I tilt my head back. Frequent migraines. Jaw pain like toothache but I have no cavities. Poor balance and dizziness which again has gotten worse over time. I use a walking stick to stop me falling over and if I close my eyes I am completely unable to balance, even just standing still! The numbness and pins and needles I felt in my legs is now occurring all over my body, albeit more dispersed. Its worst in my legs, hands and face. These sensations can be anything from numb to prickly to electric shocks or vibrations. My left hand now twitches sometimes as do my legs. I have noticed difficulty tightening my calf muscles unless I try hard and a loss of muscle tone even though I try to keep my legs moving. My toes curl up often. And when I'm tired I have to walk with my heels raised to stop my legs giving way. On occasion I've had a kind of temporary paralysis in a leg where for a few minutes I can neither feel nor move it, only for the feeling to come back in a surge of pins and needles.
One thing which I am a bit embarrassed to admit is that I sometimes have loss of concentration and poor memory. This is very frustrating as I've always had such a good memory in the past. One occasion that really frightened me was when I forgot the name of someone I had known for 3 years! The most recent development is 'lump in the throat' or globus sensation with a dull aching pain at base of throat. My GP believes this is due to acid reflux and I agree with him as it does seem worst at those times. However my uvula has now deviated to the right and he doesn't know if that's connected but said the uvula isn't necessarily symmetrical (mine was until now). Sometimes when I drink fluids a bit comes back up into my mouth and nose which scares me as I fear I might choke! Higher up in my throat there is a strange 'loose' sensation on the left side and when I look into my mouth with a mirror I can see that as well as the uvula my throat doesn't look symmetrical anymore, the tonsils are more visible on the left side and the soft palate hangs slightly different. This wouldn't bother me if not for the swallowing problem.
I'm thinking neurology may be key in all this i.e. the strange tingling etc sensations. I have heard of various neurological conditions but they sound very complex and I have never had a brain scan. The worse my problems get the more I'm starting to think there must be one underlying cause but I'm at a loss to explain it and the doctors have seen me in various departments only to come up with no explanation. Normal 25 years olds do not have this many separate problems esp. as I never smoke, drink, or take recreational drugs. My current medications are tramacet, lansoprazole, gaviscon and frovatripan. I'm scared that I don't know what's coming next and I have no diagnosis to prepare myself if it gets much worse. Sorry to go on so much! Any possible medical explanations or similar experiences would be much appreciated. Thank you.
I'm sitting here with my mouth hanging open, you poor thing!! You have my complete sympathy. But where do I start? Deep breath!
At first I wanted to send you to the Chiari Malformation forum. And maybe you should post on that forum - I'm not sure. You do seem to have neurologic problems, from head to toe.
Did they check you for a B12 deficiency or pernicious anemia (usually found later in life, but not unheard of at your age)? Did they check you for celiac disease with a biopsy during your endoscopy? I would have thought Crohn's, but they definitely would have seen something on the colonoscopy and possibly the endoscopy. So I'm back to celiac. Celiac can cause many vitamin and mineral and nutrient deficiencies leading to many of your problems. Was your thyroid checked? How about hormone issues - are your periods regular with no problems? Did they ever test your stomach acid - maybe you're not making enough - crucial to a well functioning GI tract and to absorption of your nutrients that help keep body systems functioning well.
How about family history - anyone even come close to some of the symptoms that you have? Were you a tippy-toe walker when you were little?
Even if you tested negative for celiac disease, I would recommend you try the diet to see if something improves with time. If nothing improves, you'll be no worse for trying it.
Make sure you keep reposting your above post until you start getting comments. Post away on any forum you think might be able to give you input. I repeat, you poor thing. I hope someone is able to help you.
Thanks for your reply (and sympathy!) That is interesting about Chiari malformation, I've never heard of it before so am going to read up on it. My gp suggested that sinus pressure could be part of the cause of my migraines as the pain is worst when I tilt my head forward, not sure how that relates to overall cranial pressure but my head does feel tight in general.
I've had blood tests with FBC and was told my nutritional levels were normal, I'd guess that includes B12 but will check it out. I have suspected I might be getting occaisional anemia before as I get cracks in the corners of my mouth. But then my gp did say that you can become temporarily anemic just from blood loss in the stools.
The only medical issues in my mothers family history is DVT, both me and her have some nasty looking varicose veins but not DVT. I wear compression stockings just in case (I have learned to plan ahead!) what with the limited mobility and leg aches etc. My dads family history is unknown as he was adopted but he himself had many of the same digestive symptoms as me and was diagnosed with diverticuler disease at 32 (unusually young). They also suspected he might have crohns but I don't know if this was ever confirmed as he ended up having an emergency colectomy. He also got migraines in his early 20s but nothing like mine.
I know they did take biopsys from my colon and stomach, as celiac is found in the small intestine I wasnt sure if that confirms for certain I coundn't have it but I assume it does (they don't really tell me what the results actually mean in detail very often!) I think the acid levels were normal aswell. One thing I've been wondering recently is if the digestive problems could be to do with poor overall motility/muscle function if there is no obvious disease. My stomach does feel full quickly. And without going into TOO graphic detail the proccess of having a bowel movement when I actually have control of it has become slow. Even the cramps seem drawn out!
I haven't had my thyroid checked but my periods are normal. I asked my mum if I was a toe walker but she doesn't remember. I do remember I needed custom fitted shoes when I was little because I have narrow heels and wide toes. Perhaps thats why my heels give way first when I'm tired. I tend to avoid the toe walking unless I absolutely need to as I want to keep my movements as normal as possible but easier said than done!
I would really like for you to give the gluten free diet a try and see if it helps. It can't hurt.
And if it turns out to help you, that would be awesome! You will need to take gluten free vitamins to make up for the vitamins lost in the diet. NatureMade is a gluten free brand. There's others I'm sure, but I haven't checked into that. Stick to the diet for at least 3 months. If you need help with the diet, just leave me a message.
I'm going to try to get an appointment with my gp and push for a refferal to neuro so when I see him I will ask about the gluten free diet. Would like to give it a go but will have to check with him first as the foods I can eat are already limited because my stomach+bowel are so sensitive. esp as I rely quite heavily on things like bread and starchy things to raise my blood sugar quickly when I'm crashing but I know there are gluten free breads available so shouldn't be too much of a ploblem. I'm in the UK so the brands available may be different to the US. My mum does the food shopping so I've just asked her and she says she will check what the supermarket has.
I don't have any explanation for you, I am sorry. I just wanted to let you know that I am 22 and have just as many separate problems right now, and it adds up to a lot of suffering. I spend most of my time in bed too, and also feel less sharp than I used to be. It's really frightening to think of what is going to come next. It also makes me feel extremely depressed to know that I don't have control over my life anymore, my symptoms do. I wish you the best of luck in trying to find your answers.
If you have a tendency for hypoglycemia, the gluten free diet might cure that problem within a few days. Or you might need a low carb diet - without the sugars and grains, etc. your blood sugar should even out.
i am a 39yr female and i have suffered from many of the same symptoms that you have reported to have suffered from. I have been seen by many doctors over the past few years and can never get an answer as to why i am having the symptoms they just keep giving me pain meds with no resolution. I noticed that your post was from several years ago and I was just wondering if you have since received and diagnosis?
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