I’ve had radiotherapy at the start of this year for prostate cancer. Although the outcome seems to be satisfactory regarding the cancer in the last 3 months I have been suffering from pain and numbness in my feet and left hand and I also have restless legs syndrome.
I live near to Glasgow and wonder if anyone has any experience of, or can recommend, a neurologist with a particular interest in these conditions?
Hope someone can point me in the right direction
I can't help you with your questions but possibly can give you some advice about your RLS. I noticed You started taking pramipexole 2 months ago. You should be aware that dopamine agonists like pramipexole and ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a... Be aware of the signs of augmentation which are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. When that happens you will have to come off it.
Have you had your ferritin checked? Ifso, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice. Improving your ferritin is one of the ways to help avoid augmentation.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
sorry autocorrect took over - should read neuropathy 🫤
Thanks - a lot to look at there
Hi, glad to hear that the cancer seems to be ok, but the radiotherapy is likely to have depleted Vit C, Vit E, and more relevantly given your symptoms, Vit B12 and folate (B9). Restless legs and peripheral or small fibre neuropathy common with cancer treatments. Be aware that doctors often don't test B12 or folate and that testing is tricky, in that there is no definitive test. Serum may be low, but may also be mid-range or high and still not be getting into cells. So first thing ask for a serum B12 and folate test, but remember that knowledge of proper diagnosis is poor and there are other tests that you would need to be certain that this is not a problem for you. Stress depletes vits too, so may also be playing a part, as I guess you've had a lot to deal with. Best test before supplementing as supplements will skew test results, and never let them give you high dose folic without B12 first. Cheers
I developed neuropathy from Chemo last year. Tried several supplements but acupuncture has help me the most. My hands are fine now 11 months since last treatment. My feet are getting better, mostly in the ball of my foot. I have been doing acupuncture for 5/6 months now. I don’t have pain, mostly numbness and feeling like my foot is swollen. My GP does my acupuncture, tried someone else but saw no improvement with them. Hope your gets better soon
Thanks for the information. I'll check out
There are some very helpful supplements you can take for peripheral neuropathy. A friend who has the condition did find improvement from taking foods high in these or the vitamin supplements.
healthline.com/health/neuro...
Thanks - lots to look at there. Before I started my cancer treatment I asked the oncologist about the benefits of taking supplements. Her reply was none!
How sad, but they get no training so don't know any better.
Whilst I agree about vitamins, nutrients and supplements being very helpful with neuropathy (which ones needing fine tuning depending on cause/s) I do disagree with this article about B6. The reason that people have neuro problems with B6 is usually because they are taking the vitamer (form) Pyridoxine, which blocks the action of the active form P5P. So you are supplementing but show signs of deficiency. I use P5P and have no problems. pubmed.ncbi.nlm.nih.gov/287... Cheers
I had hormone treatment along with radiotherapy. It was a 7.5-week daily course of radiotherapy that I opted to have each afternoon and rested before going to work the following morning. I had the dedicated support of my wife until she passed in 2018, December.
From the second radiotherapy session, Restless Legs Syndrome set in viciously. I cannot guarantee where the therapeutic beams entered my body, if at all at the intended prostrate infected sites, as I twisted and turned on the table while radiotherapy continued uninterrupted.
Since February 2012, the commencement of radiotherapy and hormone therapy, my testosterone level naturally decreased and PSA has been less than 0.2. However, as a legacy I am severely affected by RLS, despite various medication changes over the last 12 years.
The hormone therapy was stopped about 10 years ago, consequently, testosterone levels have risen since.
Although I'm in remission, the Catch-22 situation is that testosterone may fuel prostate cancer!
My main problem is sleeplessness and RLS.
I'm not sure if acupuncture and Chinese massage could help with these side effects.
Best wishes to all in the quest to alleviate your condition and help other sufferers.
Hi there Elouis and thanks for your message. I had 4 weeks Mon to Friday of radiotherapy and was pleased as I didn’t feel unwell or tired during it. It seems to have crept up on me a couple of months after the radiotherapy treatment ended. I’ve been on hormone blocker for a year now and I ‘m told that this should continue for another 2 years. My GP prescribed me pramipexole about a month ago and I’ve been taking a low dose as it does help me get to sleep. As you will probably know the down side is augmentation and I plan to talk to my doctor about this when I see him in 10 days time. My numb feet and left hand started just after the rls.
I’m quite surprised that your radiotherapy treatment was continued if you were not able to stay still during it. There is so much information about treating rls but as everyone is different it seems to be a suck it and see approach is needed.
What annoys me is the lack of acknowledgment by doctors that the radiotherapy could be the cause. Whenever I suggest that I wait for the noncommittal stare. Maybe I need to accept that it is academic how I got it and try to focus on how to best deal with it.
You are obviously much further down the line in having had your treatment 13 years ago but it’s worrying that you still have to suffer these symptoms. My first blood test said my PSA is negligible. I get a second one later this month and a third one in October. If they are all low then like you it will be deemed to be that I’m in remission.
Thanks again for your message - we are not alone in our experience!
About a year post-radiotherapy, at my follow-up appointment, I commented that I had to grin and bear the RLS onset. The consultant and his colleague just laughed. It made me feel that RLS is part of my radiotherapy choice. The prostrate cancer surgeon was not in favor of surgery due to my cerebral demyelination, which he considered an unavoidable risk.
yes it feels like all the attention is focused on getting rid of the cancer (definitely a good thing) but at what other costs? When I did all my reading up about side effects before I got my treatment I don’t recall rls being mentioned as a possibility. Although the mantra is about involving the patient in reality you take the advice of the doctors. I certainly didn’t feel we sat down with a blank page. The choice was already made. The option of not getting treated wasn’t much of a choice.
Am I angry at the disease or the system? Both I think and I suppose living in a country where you are offered treatment without looking at you credit card is a big bonus
There is a limit to what medical science can help patients. My gut feeling is that the consultants provide preferential treatment to their private patients, who oil their way with their credit cards. and/or influence.
You could be right - we live in a world full of regulations and standards that give the impression that everything is above board and everyone is treated equally but money is often the bottom line!
I'm sorry I'm seeing this quite late on. I hope by now your RLS is settling. I'm a qualified radiotherapy radiographer and in my opinion I'd be incredibly surprised if the radiotherapy caused RLS. Dis you have any chemo as this cause cause issues with neuropathy.
Elouis you mention moving during treatment amd you're not sure where the rays entered. The whole time during treatment you're being watched on a CCTV camera to make sure you don't move, so I'd say any movements you made aren't as big as you thought they were or treatment would have immediately been stopped. Radiotherapy at that dose is too dangerous to give to someone who isntwisting and turning on the bed as you described. It's a carefully calculated treatment aimed to miss vital organs and target cancer cells and movement during treatment is closely monitored.
Radiotherapy is localised and affects things locally so RLS to my mind is not caused by this. I could be wrong but I think it's some other cocktail of drugs, hormonal fluctuations or something else relating to the diagnosis that brought this on. I wish you well amd I hope you're over this bought. I'm typing this as I'm pacing my kitchen at 3:15 am with RLS!
Thank you for your reply. No I was fortunate enough not to need chemotherapy. What I find strange is that I have never been bothered by RLS or peripheral neuropathy in the past 75 years. They only appeared shortly after my radiotherapy. Coincidence or what? It would be interesting to know if any research has been carried out in this area.
Thanks for your reply - better late than never!
Update on neurology appointment 
Peripheral neuropathy.
Neurology Appointment Today
update from neurology appt last night 
