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WM presents a vast range of symptoms before diagnosis, which can involve extreme fatigue, night sweats, lack of concentration, increasing susceptability to infections such as shingles, breathlessness, sinus problems, possible weight loss or gum and nosebleeds.
In most cases the disease is slow moving (indolent), giving patients and doctors time to assess progress. Often the first symptoms are spotted by partners and may be confused with other diseases such as early MS, particularly if there is peripheral neuropathy (sensory nerve damage in hands or feet - usually tingling or discomfort) caused by the disease.
In a number of cases WM is symptomless and is picked up by a routine extended blood test which includes immunoglobulins. The patient may then be placed on 'Watch and Wait'. In some people it may never develop as full WM - sometimes called 'smouldering WM'.
The pathway for many patients is treatment resulting in remission then retreatment with a different therapy after relapse. As therapies have become more effective, the time to relapse has become longer and recent developments give the increasing promise of treating WM as a chronic disease which will be controlled in the long term, not unlike diabetes. For many, the main challenge will be dealing with the side effects of chemotherapy rather than the disease itself.
It's important psychologically for most patients to take control of their disease, rather than seeing themselves as victims, and learn to live with it and negotiate their 'journey'. Many become expert patients, reading about new treatments (perhaps setting up Google alerts to flag up news), attending support groups and involving themselves with online forums. Many choose to keep key blood test results on a spreadsheet to see how treatment affects them and compare their day to day feelings with the latest results. This may be a little alien to the average passive patient, but no doctor will fail to give you your results if you ask.
Sometimes dealing with the side effects of WM help the patient to be more positive. For instance some suffer from gastric reflux which can be easily controlled with daily medication such as Lanzoprazole and others from sinus infection which can be sorted by a simple operation. Even nerve damage can be tested to see if it's likely to be reversible after treatment.
It's inevitable that partners, relatives or carers come to feel more under pressure than sufferers.
Finally remember that you have the right to a second opinion in the NHS and no caring doctor should resist your request if you feel you are not making progress.
Lifestyle and Diet
The only definitive thing which can be said is that WM patients should endeavour to live as full and varied a life as possible. Some embark on fund raising challenges or even run marathons. The IWMF website contains a considerable number of lifestyle suggestions, including 'alternative' therapies, diet and psychology. 'The Torch' magazine usually has a food section.
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