Is there anyone suffering lymphoedema or arachnoiditis?

[Dollbae]

I am experiencing trickling water down the leg with uncontrollably electric shocks and movements that’s so uncomfortable what am I to do who am I to see that could help me Understand what’s going on with my calf’s

[Lynora]

Have you been seen by a neurologist for arachnoiditis? If not, you should ask for a referral.

[Abbie104]

Hi Dollbae

I've got lymphodema in my breast, arm & back and the feeling of water running down your appendage is unfortunately normal (if you have ACTUAL water, it might be celulitus & you should contact your GP immediately). I also get occasional shocks in my arm which I've been told is the nerve end and / or the pressure from the lymphodema when it's swelling. These can be startling to painful, though always unpredictable.

Find out if you have a lymphodema clinic nearby and / or get your GP to refer you immediately (due to the lockdown, they might not be able to see you, though they may be able to give you some guidance).

Because lymph is moved around the body kinetically, the more we're able to move the better, so because of where it is with me, I move things (like handwash) slightly out of reach, so that I have to streach constantly. If you find it difficult to walk, then the simple moving of your leg up n down should eventually help a bit.

Theres also facebook groups which can be helpful, even if it's just to know that your not going crazy.

Hope things become a little calmer soon x

[DeadfootMo]

Hello if you can take photos of the limbs that are affected and upload them to your gp's they might get a clearer picture of what you are referring to. In these Covid times I think all patients who want to have some serious advice have to go the extra mile to get it, as clinics and surgeries have a closed door policy at the moment and have done since March. I have to admit it though I am pretty disgusted with the lack of medical services from GP practices these days, as in all honesty I see no reason why they can't see patients in surgeries.

I am also infuriated by the amount of automated phone calls there are, as these are like hoops of fire to jump through before you can even speak to someone. I often find myself asking the question if a GP doesn't want to provide a public service in the name of medicine why bother becoming a GP in the first place?

The rigmarolle even for a repeat prescription is a joke. Covid -19 days or not, I feel all GP's have been given a paid holiday courtesy of the task payer. Meanwhile, the government sends kids back to school, and all other workers back to work, but GP's medical centres and hospitals have cancelled essential health services and operations and treatments to the detriment of the nations health and well being.

So Dollbae I wish you all the best in getting seen to asap, as you shouldn't be left suffering any longer than necessary.

[Jennymary in reply to DeadfootMo]

Was interested to read your thoughts on repeat prescription, when lockdown first happened I registered with Boots online to get meds delivered, had nothing but problems, eventually I was told by them that all my outstanding scripts had been filled and I could go back to Patient Access, which I used before lockdown, I duly ordered meds only to get a curt text informing me that I've been enrolled on Repeat Dispensing, GP's send scripts to a central database, I contact pharmacy who request from said database, this is supposed to save GP thousands of hours a year, so if your having problems might be worth trying to find out if you're on this scheme

[BedfordBoy in reply to DeadfootMo]

I couldn't agree with you more! It's disgraceful how GP surgeries are like fort knox and you can't even speak to a person, just answer phones. Mind you, the other day after much persevering, I managed to get through to a human to ask for more antibiotics, as my emergency supply was running out. I wish I hadn't bothered. She was rude, not listening at all and then to add to the insult, she laughed at me when I said if I don't keep the antibiotics up I could die, as I've been hospitalised a few times before (cellulitis and sepsis).

I was livid and said I'd like her name and she refused. I asked to speak to the practice manager and she refused that too. I emailed a complaint to the practice and got no response.

A couple of days later when getting my annual flu jab, the practice manager smiled at me and said "we meet again". No mention of the complaint I made. I'm thinking about how I escalate this as the whole practice don't seem fit for purpose. In my view, they are all in the wrong job if they don't like dealing with patients.

[DeadfootMo in reply to BedfordBoy]

Hello Bedford Boy, You have a right to know who you are talking to and when I get through to someone I always ask who I am talking to first, Then I tell them what my problem is or what I need a repeat of or why I would like to talk to my GP or someone else on the practice representing my doctor. If I am lucky I will get through all those stages, if not the advice is to ring 111 for emergency prescriptions or advice. If there is an immediate emergency the advice is to ring 999 and ask for an ambulance to the nearest A&E department. Of course this could depend on the time of day when you ring.

If anyone had a complaint to register the Family practitioner committee (FPC)used to hear complaints as well as the British Medical Association. (BMA)

With respect to antibiotics most GPS will not prescribe these unless you have an existing condition at that time that needs them. GP's are being advised not to prescribe them for people to keep as stock on the off chance they might catch something. Many GP's are looking for alternatives to antibiotics as over time your body can fail to find the antibodies it needs to fight infection and they do render you as needing stronger and stronger antibiotics the more times in the year you have them. And then apparently they are of no use to you if you become dependent on them.

The same can be said of painkillers and steroid treatments.

[BedfordBoy in reply to DeadfootMo]

Hi deadfootMo,

On my last attack of cellulitis my GP agreed that as I have been hospitalised several times and I nearly lost my leg due to sepsis, that I was allowed to have a small quantity of antibiotics at home. The quicker they get in my system, the quicker I recover and the less chance of me being carted off to hospital. Previous GP's had the outdated reverse view so I was so happy that my latest GP was forward thinking.

The trouble with the surgery is with the receptionists and managerial staff who think they are more important than the doctors! As shown by the total lack of respect to me when I rang the surgery.

In the past, I've had to plead with them because they took me off the yearly flu jab list without authority. I have had flu jabs for the last 12 years due to health issues. The doctor over ruled them and told them to reinstate me. They act like they are in their own little kingdom at times!

My complaint is still ongoing and the GP has sent me a email saying that he's at last looking into it.

There's villages in the middle of Africa with better access to a doctor than my village!

[roysome in reply to BedfordBoy]

Do do something about it. Take your grievances to the highest level possible.

I too have experienced the haughtiness of a doctor's receptionist. They do have a reputation.

Some seem to think that they are trained as medics with the way they behave.

[BedfordBoy in reply to roysome]

Hi RoysomeI felt fully justified with the complaint I made as I was sent a letter from the surgery.

They found that the standard of proffesionalism was lacking and they apologised to me. They are retraining the offending member of staff who was rude to me and I was satisfied with the result. I'm not one to complain about trivial things but they really didn't give me any other choice but make an official comaint.

So I advise anybody else who is getting sub standard treatment to do likewise. It's the only way that standards will improve.

[DeadfootMo]

I'm not so sure about the validity of GP's saving money, what is being saved are the paper proofs of prescriptions as Dr's no longer print these as they have an electronic record, but the chemist in checking for what they order in and dispense print out the prescriptions instead as its documentary proof for payment from the NHS Trusts. So there is a nominal carbon footprint saving for GP's.

Re what system I am on, I couldn't really say, to me its just a repeat prescription service where I ring my GP with what I need, they then inform the chemist and the chemist then orders the meds in and then finally dispenses it to me. My chemist is a boots store too, but only until recently I used to collect my meds from the chemist, but last Tuesday I broke my 5th Metatarsal on the side of my foot, so received my first ever delivery yesterday, free of charge.

However, what used to be a 24 hour or 48 hour dispensing system from your GP, in Britain and in most larger chain Boots stores the pharmacy may take 4 or 5 days before they have your medicines ready to dispense.

[Toui]

Hi

I have Adhesive Arachnoiditis and a Cyst pressing into the spinal cord between L4/ L5 and S1 caused by dissectomy and decompression 3 years ago. The more I talk to GP and consultant, the more I realise they do not know enough about this condition which is considered rare in the UK.

I also have the symptoms that you describe - electric shocks through the toes into the legs, crawling insects, numb feet with loss of proprioception, involuntary twitching and jerking that can keep you awake at night, spasms in the legs, frequent flare ups with neuropathic pains from the head to your toes, etc...I know and feel your pain.

However, I found arachnoiditishope.com by Dr Forrest Tennant and this gives you a complete low down of the condition and how to manage it. It is worth a read.

I have also been successful at claiming a PIP and a War Disability Pension with the higher mobility supplement. I am happy to assist with my own experience , if it helps.

[2-hot-4-sleeves]

have you seen an orthopedic specialist? My lymphedema is in the arm but for years I've had back problems with sciatica and sometimes have the associated neurological problem of feeling fluid running down leg or I keep trying to brush away the "bug" that isn't really there.