Q: BOTH MY legs are stiff and hot all the time, and from just under my knees I feel like I'm wearing lead boots. The hospital says it's probably arthritis. Can you offer any further suggestions? I can't go on with this terrible pain. I'm 84.
TCC
A: DO NOT despair, I think there may be ways to end, or at least ease, this awful pain.
My suspicion is the sensations in your legs stem from a neurological problem — i.e. affecting the nerves supplying the region.
One of the most common causes of these kinds of symptoms is type 2 diabetes. Even when there are no other signs of the condition, the raised blood sugar levels can damage nerves in the lower legs, resulting in both pain (typically a searing pain) and reduced sensation, even numbness.
Type 2 diabetes is diagnosed with blood or urine tests to check blood sugar levels. But I suspect this is not the issue in your case, as you will already have had those tests and diabetes will almost certainly have been excluded.
Another common cause of these sensations is referred pain, caused by nerve entrapment in the lower part of your spine.
This is typically triggered by spinal stenosis, or osteoarthritis of the lower vertebrae of the spine: the body tries to self-repair — leading to inflammation and the formation of new bone, which in turn narrows the spinal canal (the tunnel that carries the bundle of nerves known as the spinal cord).
The spinal cord ends around the level of your lowest rib, where the nerves then form a bundle called the cauda equina, before forking and running down each leg.
In your longer letter, you mention you've had an MRI of your spine, which would have identified if you have spinal stenosis.
My thinking is that you have osteoarthritis of the lower spine, which has resulted in inflammation and excess bone that's impinging on these nerves.
I suspect the diagnosis has not been clearly explained to you, but your GP should be able to confirm this from the MRI results.
The next step is then to discuss treatment options — as well as possibly a prescription of anti-inflammatory drugs, the first option should be a consultation with a physiotherapist, as they can give you exercises that can make a real difference.
This usually requires a GP referral. But if, despite physiotherapy, there is no improvement within eight weeks or so, it suggests you need to see a spinal surgeon.
Although the prospect of surgery is daunting, there is no contraindication in a man of 84, providing you have no other health conditions that might preclude a general anaesthetic. I suspect an operation might give you the best prospect of recovering from your intolerable predicament, and I urge you to be optimistic.
Read more: Haemochromatosis is a ‘Celtic curse' which silently ‘destroys lives'
Q: I'VE HAD haemochromatosis for 20 years, and for most of that time was advised to have blood taken regularly to keep my iron levels as low as possible. I haven't had it done for five years, but would it not be a smart practice to resume?
JN
A: I CAN understand your thinking: haemochromatosis is, after all, a condition that leads to a build-up of iron over time.
In some people this causes no symptoms, but without treatment there is a risk that this build-up can lead to joint or liver damage.
Venesection, or the removal of half a litre of blood periodically (say, every few months), keeps iron levels in check. The aim is to maintain a ferritin level (a measure of how much iron is stored in the body) below 500ng/ml.
From your longer letter, it sounds as though your GP is closely monitoring your ferritin and you don't need to part with more blood.
But there might be another explanation: you also mention you have multiple sclerosis (MS).
MS can also cause raised ferritin levels and it does make me wonder about the diagnosis of haemochromatosis 20 years ago (before genetic testing became available), i.e. whether your MS has been the real cause of your high iron levels instead. If so, this might explain why your ferritin levels have not continued to rise.
I'd suggest asking your GP about genetic testing to confirm or exclude your haemochromatosis diagnosis.
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