Serious undiagnosed Illness

[bimjim]

Hi, can anybody please help with any of the following -

My husband started to feel unwell approximately 2 1/2 years ago, has gradually got worse and as yet we are no nearer to finding a diagnosis. He was diagnosed with Hairy Cell Leukaemia in 1993 and subsequently had chemotherapy (Interferon) for 13 months, then a break of 3 months and then 4 lots of Pentastatin at 2-weekly intervals. The Leukaemia returned in August 2003 and he had further chemotherapy (Chladrabine). The Leukaemia is now under control with yearly check-ups and he takes no medication for this. He is on Warfarin for life after 3 DVTs following  ruptured Achilles Tendon. He was diagnosed with Reflux Oesophagus in September 2008 and takes Nexium for this.

2 1/2 years ago he started to feel that all his energy was deserting him and he frequently had to to to bed because he was completely exhausted. He also felt that his food intake was not converting to energy and was eating small amounts every 2 hours (and still does) in order to try and keep his energy levels up but l hour after eating he is back to feeling very weak again. He is 66 years of age and worked all his life as a market gardener selling his plants/flowers on a market stall.   He was used to manual work for many years and found working long hours no problem.

Having seen 2 Endocrinologists and undergone numerous tests he has been diagnosed with Coeliac Disease. In spite of keeping strictly to the diet for the last eight months he feels no better and continues to get worse. We know it is unusual for someone on this diet not to feel better after a few weeks. The Coeliac Specialist we see said he thought there was more to this other than the Coeliac Disease.

He is fine when he is laid down and when he gets up in a morning. However, the minute he starts eating the glands in his neck ache to such an extent that he keeps a wet towel round his neck to try and help the problem. The muscles in his legs also continually ache. Once he has eaten food the aching glands in his neck and the aching muscles in his legs subside for a short time. He is continually tired out and very lethargic. He is not diabetic.

In the space of 2 1/2 years he has gone from being a keen cyclist doing 30 miles a day in the Dales to not now having the energy to fetch the morning newspapers a few minutes cycle ride away.

If any of you members have any ideas it would be much appreciated as we are now at our wits end. Many thanks for your consideration.

bimjim

[thyroidian]

Hi.
Firstly congratulations for beating the dreaded C.
I have read your post, and then got to the part were it stated you have had 3 DVTs, did you find a cause why you got repeated bloodclots.
I see you are on lifelong warfarin, have you been tested for APS?
This is a systematic auto-immune blood disorder, which can cause muscle aches , undiscribable fatigue, joint problems, cramp in the legs, and stomach problems,etc...
This is found with two simple bloodtests, the first being anticardiolipin antibodies, and the second test being Lupus anticoagulant.
You only have to test positive for one, of the tests for diagnosis.
Even though the correct treatment for the condition is warfarin, but they tend to run an INR of 3-4, for APS, and i dont know what levels your INR are.

Only if it is APS, then you may need to see a specialist who deals in APS, for the correct dosage.
I hope this has helped, and maybe you could rule it out,
Best wishes, if you need anymore help im here.
Take care
Nicola

[bimjim]

Thanks for that paul. I take note of your very interesting comments.   I hope you feel better soon.

bimjim

[2005paulrw]

How interesting that I should find your post on here right now! I have had pretty much the same thing and as yet it is undiagnosed. I have tried all kinds of things, been through treatment for so many different things, I have seen a nutritionist, a psychriatrist, had counselling,, had tests for SAD (it was unconclusive!), had the mecury removed from my teeth and had white fillings put in instead, have been on a diet to try to rid myself of Candida Albicans and while all this is going on I have had treatments for enlarged prostate (which have involved two procedures and many weeks off work) and I am now awaiting results of a biopsy to see if there are cancer cells in my prostate. I have been suffereing fropm muscle aches for about ten years and it renders me totally exhausted and unable to work. I did a search to try to find out any other reasons why I am still suffereing with all these muscle aches and pains - its like life is slipping away and I want to regain it. I am only 55 and feel I still have a lot that I want to do but these recurrent problems are being all too frequent and unopleasant now.  best wishes.. Paul

[bimjim]

Thanks amanda your comments are most helpful.

bimjim

[amanda0601]

Hi bimjiim. I can understand how worrying this must be for you. I can't give you a diagnosis as I'm not a doctor but I would assume he has already had all medical tests and been given medication. Do you think on top of his illnesses he has developed depression as I have seen this in my own family and depression alone can leave you exhausted and unable to get out of bed. You realy can feel terribly ill and not realise you have depression. I would suggest if all other areas fail he could try aquapunctre or hypnosis. A good hypnotherapist could give a past life regression also which has been beneficial to many people suffering illness and many go on to make a great recovery. I'm not saying this should be done over medical care but if all else fails he has nothing to lose by giving this a try. Many alternative therapy's have worked were medicine fails and I think it would be a good idea to look into these areas such as hyponotherapy and healing. I hope he feels better soon.