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29/M in UK suffering mystery illness for approx 18 months
Dear Forum:
I write in the hope that someone, somewhere has seen similar symptoms to mine at some point and could possibly provide some direction as to where the medical professionals currently treating me could look next.
I am a 29 year old, normally fit and well male. I observe a varied but moderately healthy diet. I walk and play badminton for exercise, and I also climb. Previous medical history includes Glandular Fever and resultant Hepatitis - however I cannot remember whether it was diagnosed B or C. This was approximately 10 years ago. The effects continued for around 2 years following diagnosis.
Around 18 months ago, I began to feel very run down and generally fatigued to the point it was difficult to get myself out of bed in the morning. No amount of sleep ever seemed enough. I also had the added complication of having acute sleepiness - where over a period of a couple of minutes I would suddenly become very tired and need to sleep. It is not possible to divert this, my body requires to sleep. When this occurs I "sleep" for a few minutes, although I am aware of what is going on around about me - noises etc. However for all intense purposes - I am unconcious. Additional general symptoms - I can experience days of severe flu-like symptoms and extreme headaches, often combined with the next major symptom.
In conjunction with the above, which does appear to be linked, I began to suffer severe allergic reactions which has been diagnosed as chronic urticaria. I can now tell when I am going to have a "bad" reaction as on the days preceeding I will begin to feel very, very tired and worn down and the flu symptoms will intensify and I will suffer horrendous headaches in the forehead.
When the allergic reaction occurs, it progresses over a period of hours - it will begin with rashes all over my body, turning to boils and blisters on my upper body and then ultimately without treatment anaphylaxis.
I have now been prescribed Fexofenadine and Prednisalone to control the reactions, where the steroid does not stop the reaction I have to seek emergency medical care.
Upon a major reaction and investigation, I become hypertensive which can hold at around 200/140 for several hours. I am not being treated for hypertension. I have regular blood tests which persistently return slightly abornmal LFT values, low potassium and increased CRP value - however nothing significant. Urine tests are generally normal although elevated protein is often seen.
Liver Ultrasound revealled 3 benign cysts, which were MRI'd with no immediate concern, however advice to monitor. I had a brain scan which was also normal. Most recently I also had a chest CT which also returned normal. Any scans I have had have been non-contrast as no-one is willing to inject any dye in case it triggers a reaction.
I have seen several consultants (privately) of differing specialities from Neurology, GI and Dermatology. I have been unable to undertake allergy testing as there does not appear to be any external trigger for the reactions. My GI Consultant was moving towards the direction of Wilsons Disease, however this was subsequently discounted following specific test. Due to the acute sleepiness, one other consideration was Narcolepsy - however this has also been discounted.
My life is affected on a day to day basis and I cannot remember feeling normal. I frequently contract colds and sometimes minor viruses - however I have been advised this is probably as a result of my immune system being lowered.
Can anyone help as no-one knows what to do with me here, or where to look next? All they can do is try and treat me when it gets bad.
Sincere Thanks,
Peter
I write in the hope that someone, somewhere has seen similar symptoms to mine at some point and could possibly provide some direction as to where the medical professionals currently treating me could look next.
I am a 29 year old, normally fit and well male. I observe a varied but moderately healthy diet. I walk and play badminton for exercise, and I also climb. Previous medical history includes Glandular Fever and resultant Hepatitis - however I cannot remember whether it was diagnosed B or C. This was approximately 10 years ago. The effects continued for around 2 years following diagnosis.
Around 18 months ago, I began to feel very run down and generally fatigued to the point it was difficult to get myself out of bed in the morning. No amount of sleep ever seemed enough. I also had the added complication of having acute sleepiness - where over a period of a couple of minutes I would suddenly become very tired and need to sleep. It is not possible to divert this, my body requires to sleep. When this occurs I "sleep" for a few minutes, although I am aware of what is going on around about me - noises etc. However for all intense purposes - I am unconcious. Additional general symptoms - I can experience days of severe flu-like symptoms and extreme headaches, often combined with the next major symptom.
In conjunction with the above, which does appear to be linked, I began to suffer severe allergic reactions which has been diagnosed as chronic urticaria. I can now tell when I am going to have a "bad" reaction as on the days preceeding I will begin to feel very, very tired and worn down and the flu symptoms will intensify and I will suffer horrendous headaches in the forehead.
When the allergic reaction occurs, it progresses over a period of hours - it will begin with rashes all over my body, turning to boils and blisters on my upper body and then ultimately without treatment anaphylaxis.
I have now been prescribed Fexofenadine and Prednisalone to control the reactions, where the steroid does not stop the reaction I have to seek emergency medical care.
Upon a major reaction and investigation, I become hypertensive which can hold at around 200/140 for several hours. I am not being treated for hypertension. I have regular blood tests which persistently return slightly abornmal LFT values, low potassium and increased CRP value - however nothing significant. Urine tests are generally normal although elevated protein is often seen.
Liver Ultrasound revealled 3 benign cysts, which were MRI'd with no immediate concern, however advice to monitor. I had a brain scan which was also normal. Most recently I also had a chest CT which also returned normal. Any scans I have had have been non-contrast as no-one is willing to inject any dye in case it triggers a reaction.
I have seen several consultants (privately) of differing specialities from Neurology, GI and Dermatology. I have been unable to undertake allergy testing as there does not appear to be any external trigger for the reactions. My GI Consultant was moving towards the direction of Wilsons Disease, however this was subsequently discounted following specific test. Due to the acute sleepiness, one other consideration was Narcolepsy - however this has also been discounted.
My life is affected on a day to day basis and I cannot remember feeling normal. I frequently contract colds and sometimes minor viruses - however I have been advised this is probably as a result of my immune system being lowered.
Can anyone help as no-one knows what to do with me here, or where to look next? All they can do is try and treat me when it gets bad.
Sincere Thanks,
Peter
Since I didn't know that it would delete the name of the company (healthy and all, I can't stand Spam myself...). I'll say that what she had gotten was a high quality multi, vitamin C, I believe something I can't remember the name for immune, probiotics, and I think that's most of it... I'll ask her. She seems to be managing some of her symptoms well...
I was having major fatigue symptoms and have had all the points checked for fibromyalgia with accuracy...
If what you had was rheumatoid then I would say that trying what I've tried (going on a mostly vegan diet and eating more raw foods) would help (there is a research article on PubMed verifying the efficacy of this) because it has helped me with a lot of my pains...
Um, I have a good friend with Hepatitis and she has a lot of fatigue due to her liver having major issues... She got on (and, trust me, I'm not trying to promote it but to her she considers these things a miracle cure) ******* products. She has a close friend who uses them and is a distrubutor (forgot how you call it) and she came up with all the best ones for her. I spoke to this woman and she says that the difference in my friend is like night and day, she said she was soooo fatigued before and, if I'm correct, she avoided some major medicine the doctor was going to put her on at the surprise of the doctor that the ******* products worked!
Hope this helps and that the doctors pinpoint the problem/find a solution because, I believe that once you have a diagnosis you will be better able to find the products of ******* that would work for you (I had to go through a health food store myself as I can't use spirulina... I'm unique like that and all...).
If what you had was rheumatoid then I would say that trying what I've tried (going on a mostly vegan diet and eating more raw foods) would help (there is a research article on PubMed verifying the efficacy of this) because it has helped me with a lot of my pains...
Um, I have a good friend with Hepatitis and she has a lot of fatigue due to her liver having major issues... She got on (and, trust me, I'm not trying to promote it but to her she considers these things a miracle cure) ******* products. She has a close friend who uses them and is a distrubutor (forgot how you call it) and she came up with all the best ones for her. I spoke to this woman and she says that the difference in my friend is like night and day, she said she was soooo fatigued before and, if I'm correct, she avoided some major medicine the doctor was going to put her on at the surprise of the doctor that the ******* products worked!
Hope this helps and that the doctors pinpoint the problem/find a solution because, I believe that once you have a diagnosis you will be better able to find the products of ******* that would work for you (I had to go through a health food store myself as I can't use spirulina... I'm unique like that and all...).
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