Medical Mysteries Support Group
This community is dedicated to people who suffer from an illness that has been difficult to define. As advanced as modern medicine is, there still exist many cases where doctors cannot pinpoint an exact cause for pain or other symptoms. Suffering with any illness is certainly difficult, but suffering with an illness that cannot be identified can be especially difficult...
Hi All,
Please bear with me as this is only my second posting to a group on this website.
I am 21 years old and have an undiagnosed illness and seem to be getting no-where. When I was a child I was underweight but healthy until I got to age of about 7/8 when I gained weight, I was then sent to see a Dietician to try and loose the weight with no luck. When I was 16 I started having severe pain in my stomach and went to see the Doctor who said I had an inflamed stomach lining and was advised to cut out as much caffiene as possible which I have done and to this day I never consume caffiene unless it is in a bit of chocolate. This then settled down after some medication.
Then when I turned 19 I started having bad stomach pains again but they would come and go. When I was 20 I suddenly started loosing weight, I was in size 14-16 clothes then went down to 10-12 and then drastically went down to a size 6! Without trying to loose the weight, I was having toilet issues and it would take me at lease 2 hours to get ready as I was constantly in and out the loo. Eventually my Mum said I needed to take a visit to the doctors, which I did. They did an examination on me, asked for a stool sample, some bloods and referred me to the Gastro department at the Hospital. All my bloods came back clear along with my stool sample.
The gastro decided they wanted a Gastroscopy, Colonoscopy, Ultrasound and to see a Dietician. They thought it was IBS and that is what they are still saying. I went through with the Gastroscopy but only just, I suffer from Anxiety and Panic and hate hospitals so it was a big ordeal and it took me over a week to completely get over it. and so they decided that the colonoscopy wouldn't be a good idea. The gastroscopy came back clear along with the ultrasound and the dietician has tried me on a low FODMAP diet however that hasn't worked and she doesn't believe it is completely IBS due to my symptoms not matching up to most IBS patients symptoms. So I am still awaiting results from that! Thats one mystery illness for me. Another is my feet! Since I was little I have suffered with chillblains, they were managable and I would only suffer for a few days a year, this then gradually got worse as I got older. To the point where during Ocotober and April my feet are in constant agony, I can't walk, I can't shower, I can't wear shoes and I can't go out. The doctors told me to keep my feet warm and never allow them to get cold, however I would do this and they would still be so red, swollen, itchy, burny! Last year I ended up in A&E as they were so bad! If they arent red and swollen they are blue! Even summertime I have pain if they get too hot. So the doctor sent me to have blood tests done, all came back 'normal' so the next thing they did was refer me to a Rheumatologist! Well they were wonderful, they listened they asked for more bloods and they said that they believe it is Atypical Raynauds, along with sending me for more bloods they gave me Losartan to try and get the circulation working, well I took them and my feet got worse, so I did as they told me too and stopped taking them as the pain was so bad! Went back again yesterday in the hope that they would tell me some good news that they knew what was going on, instead they said 'your bloods are normal so nothing to worry about, come back in a years time! If the pain gets worse or you get ulcers come and see us sooner otherwise see you in a years time.' I went in with a list of other symptoms like pain when being knocked even the slightest, aches, tired, no energy and a pain in my right arm down to my finger but they didn't want to know. So now I have no clue whats going on and have to put up with the pain. I dread Winter time as I know I will be in agony and will miss out on a lot of things due to not being able to go out anywhere. It isn't Raynauds as I know a lot of people with this and they don't have the symptoms I have. I am feeling at a complete loss right now as I just want to know what is wrong with me so I can try and manage it. Thank you for taking the time to read, I know it is long and I have missed out quite a bit still. Jess x
you've had to deal with. I don't know quite what to say. I went through about seven years of
different inflammations and digestive issues. Some twenty years ago I was diagnosed with
chronic fatigue syndrome and then about five years later with chronic Lyme disease.
Now, I'm not saying that you have either one of these. I do know that Lyme disease can
effect peoples' feet and often their digestion. It is caused by deer tics and other insects. Some
people may have no evidence of a rash or a bite and still have the illness. In the US few doctors know how to test for it or treat it. Most people go to alternative doctors. They can treat it with
herbs, antibiotics and various things. So I just thought I'd mention this. There's a website
at www.ilads.org that has information on it. No matter what, I wish you well and just send you
the best wishes for finding some help and relief for whatever it is you're coping with
You can always personal message me if that's of help.
Thank you so much for your information and the website link, i will look into that. I am gradually getting further with tests but having more ideas to ask to be tested for is always helpful. I have a few hospital appointments in the next 2 months so will keep you all updated.
Thanks again and hope you are well x