Discussions By Condition: I cannot get a diagnosis.

Can anyone help?

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: ruth40
  • March 13, 2009
  • 04:33 PM

:confused:Sorry for the long post, but I have tried to include everything.

Hi I have been ill for over 10 years but still have no idea what is wrong with me. I am a 42 year old woman. I started getting very vague symptoms that would come and go. These included feeling physically very tired, sore throat, feeling generally unwell and stiff some mornings.

I then got more specific symptoms that came and went. I was totally incontinent in my bladder for about 4 hours, I got pain in my foot that felt like 5 needles were sticking into it, and I got patches of numbness.

I then starting getting sharp pain - I think neuralgia - initially radiating out of my right eye. It then began to spread down various parts of the right hand side of my body. I also started getting a brain fog where I found it hard to think or at times even talk. And I became partially incontinent and with mild rectal incontinence and occasional muscle weakness and blurry vision.

I also noticed that the right hand side of my face would go red and be slightly puffy. I have since started getting symptoms on the right hand of my body and the redness and puffiness that come and go, has spread to the left hand side of my face. When I am most ill I get cold as well. I also in last 2 years have 1 droopy eyelid and I can't close 1 eye and expose my eyelid.

I have since figured out that I have periods where I am well - up to 18 months! - during this time the only symptoms I get are the pain. Then I get periods where I am unwell and I get all or some of my other symptoms and the pain spreads to new parts of my body and gets worse. I also seem very liable to get fungal infections and cold sores at this time.

I also have mild bronchiecstasis and an underactive thyroid. I have had an MRI, spinal tap and lots of blood tests. MS, lupus, B12 deficiency have been ruled out and my throid levels are now normal. They basically don't know what is wrong with me.

What worries me is that over the years the pain keeps getting worse. So any ideas would be very gratefully received.

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18 Replies:

  • So sorry to hear you're going through this Ruth, wow 10 years :eek:Have you seen a doctor more recently to discuss your health ? Curious to know if you have a regular doctor at present or perhaps it's time for a new one to go over your history more indepth. ? xxxSammy http://www.undiagnosedillness.org
    Anonymous 42,789 Replies Flag this Response
  • I have a regular GP. I was initially referred to a neurologist who carried out a number of tests, then monitored me for a couple of years. But he then discharged me as he said he didn't knwo what was wrong with me. My GP has carried out blood tests e.g. for lupus when I have asked for them, but he doesn't know what is wrong either. I have lived and worked in different buildings, and my symptoms have carried on getting worse. So I don't think there is an environmental explanation. At the time I got my first symptoms I was physically run down as I was working full time and studying at the weekend and evenings.
    ruth40 55 Replies Flag this Response
  • Can you describe your pain a bit more?Also,what caused your bronchiectasis?What meds are you taking(I presume some sort of thyroid.)Which eyelid droops,and is the pupil in it smaller than the other one?
    richard wayne2b 1,232 Replies Flag this Response
  • Cold sores are obvious,but how do you know you're getting fungal infections and what kind are they?
    richard wayne2b 1,232 Replies Flag this Response
  • I take amitriptyline for pain and thyroxine for underactive thyroid.The pain started with a tingling kind of pins and needles feeling and then moved on to become a burning pain. Not exactly the same, but kind of feels like I have been scalded. I have also had, although I don't have at the moment, a sharp pain, it almost feels like an electric shock. They don't know what caused my bronchiecstasis. It developed about a year before my other symptoms started. I was living in a damp bedsit at the time and I kept getting chest infections, so the guess is that this is what caused it. It is mild so only treated with postural drainage every day. My left eyelid droops more, but both iris are the same size. I get cracking at the side of my lips and little sores. I have been told by a GP it is a fungal infection. I get cold sores on my lip, up my nostril, next to my eye and on my chin.
    ruth40 55 Replies Flag this Response
  • The cracks at the corners of your mouth is known as cheilitis and can occur with a shortage of vit.B12,folic acid,or iron.It sometimes gets a yeast infection in it called candidiasis,which isn't dangerous.It can also result from ill-fitting dentures.I still don't understand your pain:location,severity,type.Does the amytriptiline help?
    richard wayne2b 1,232 Replies Flag this Response
  • Thanks - for info I don't wear dentures. The pain occurs on the right hand side of my face and scalp - it is worst around my right eye - and spreads a bit over to the left hand side of my nose, cheek and scalp. It is also on the right hand side of my neck, shoulder, arm and back, my genital area, the left hand side of my thigh, small part of the right hand side of my calf, and my left foot - particularly on the sole. I also more get some pain on the left hand side of my back. In all of these places I get a burning type pain - don't know how else to describe it.This is there all of the time but when I have a period of being really ill this gets worse. The pain has spread over the years - initially it was just around my right eye and down to my ear. On the right hand side of my abdomen I get a sharper pain that comes and goes. Hard to describe, but usually isn't too bad. I guess it feels like something is hurting internally and sometimes feels like it goes through to my back. Occasionally I get electric shock type pains - particularly on the bottom of my foot and my face although it has happened elsewhere. This is very sharp sudden pain that lasts only a second or two.These were more frequent years ago, and rarely happen now. The pain can be very intense although only for a second or two. Nothing controls it. The burning style pain is well controlled with 75mg of amitriptyline when I am well, and if I am slighty ill - indeed I hardly feel it. When I am most ill, this doesn't control it. At its worst it is bad enough to make me feel miserable and nothing is able to distract me from it. However it is rarely that bad. When it is not controlled is usually painful, but I can be distracted from it. Thank you very much for considering my post - I really appreciate it.
    ruth40 55 Replies Flag this Response
  • Rule out Fibromyalgia and Myastenia Gravis.
    Anonymous 42,789 Replies Flag this Response
  • Any ideas?
    ruth40 55 Replies Flag this Response
  • I have no idea what's causing your pain,primarily because it's in a nonanatomical distribution and involves so many nerves that I can't explain it.
    richard wayne2b 1,232 Replies Flag this Response
  • I had assumed that some thing is attacking and damaging my nerves directly.
    ruth40 55 Replies Flag this Response
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  • How recently have you had bloodwork done? The reason I ask is that alot of these symptoms have been related back to b12 deficiency. Please be aware that there is a lot of controversy going on about whether or not the serum B12 tests are really accurate. I know that you said this was ruled out, but I'm not sure if the dr was correct in telling you this was normal. 1. The WHO does not have a range set up for b12, in america under 200 is b12 deficient, in Japan it's under 550! 2. Some people can be "clinically normal" and still exhibit signs and symptoms of b12 deficiency. The test isn't very conclusive! Also, you really might want to see your dr about your bloodwork levels, have them test b12, ferritin (iron), vitamin d, and zinc levels. I had a few of your symptoms, and starting specific vitamin regimen has helped me out in just 2 weeks! If you want to know more about b12 - take a look at the "b12 is commenly misdiagnosed" thread, under tell us your medical story! (Warning: it's huge, but we are all here to help!)
    Anonymous 42,789 Replies Flag this Response
  • The neurologist I saw carried out complete bloodwork testing for lots of things including B12. All was normal. He then did the same after 12 months - again everything was normal. The neurologist said my illness was neurological, but he didn't know what it was.
    ruth40 55 Replies Flag this Response
  • Go to www.cdc.com/cfs, and read it all. You may see your diagnosis? Hope this helps
    AngilT 13 Replies Flag this Response
  • Hi AngelT thanks for the reply - unfortunately the link you posted doesn't work. Is there another address to the page you have suggested I look at?
    ruth40 55 Replies Flag this Response
  • Hi,Just copy and paste the link in the address bar. It goes to the Centers for Disease Control, Chronic Fatigue Syndrome. This is a devastating disease that affects over 1 million people in the US, with the CDC estimating only 10% have been diagnosed. I have it, and it took 4 years to get diagnosed. I hate to see anyone go through what I went through for 4 years, and I'm a RN. I can only imagine how difficult it is to get through the system when you don't have a medical background!I wish you well, and much better health!!!
    AngilT 13 Replies Flag this Response
  • I cant help but to wonder how extensive your Thyroid testing was. So many of these symptoms you are experiencing are similar to thyroid issues. Have they pulled a TSH with free T3 and T4 levels? Blood work is a hard test to prove thyroidism they have more extensive blood panels out there and also have an MRI type machine that scans over the thyroid for about 30 min and notices any abnormalities that blood tests cant show. Also have you had any ACTH testing for Adrenal functions? Cortisol tests etc, im a nursing student and actually happen to be going through a similar issue myself.
    Anonymous 42,789 Replies Flag this Response
  • The problem with most thyroid function tests is "normal" range is what is average for the population, but doesn't necessarily mean it's normal for everyone. I had 1/2 my thyroid removed because of nodules, and every TSH, T3, and T4 came out "normal". It wasn't until a DO ran a thyroid peroxidase test that it showed thyroid problems. Don't assume that since a thyroid test comes back within range that it's perfectly ok. Your range may be different from "normal". If you are having your thyroid checked have them also run the thyroid peroxidase test.
    AngilT 13 Replies Flag this Response
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