Hi all really really need help and advice only 40 years old single disabled mum to 3 children no family or support. had many health issues spanning 20 yrs plus fatigue severe headaches numbness arms hands had bi-lateral CTS surgery told had ME in 1992 health deteriorated on and off episodes of bed ridden unable to eat weakness numbness and last 5 years fought early cancer 5 times 5 places all stage 1 had 18 major surgeries left partly disabled… Caused by HPV virus which is still rife in my body no cure and recurring. over the last 15 yrs memory deteriorated short term is terrible people have commented and noticed. I have neurologic bladder won’t empty (catheters) no feeling to pass water same problem with bowel and stomach slow motility incontenince (meds for motility issues) other symptoms I have are pins & needles numbness in legs, feet and back of head espesh behind ear right& left sides stammering when talking esp on the phone and a bit slow with words chose wrong word get annoyed!! memory short term getting worse noticed by family and my son really terrible people have noticed forgot to collect son from school and locked self out of house 3 times now and left taps on in bathroom and oven & iron on Hairloss, Vitiligo Occasionally feel have lump in throat and lots of siliva and need tissues to mop it up Hot feet on soles sometimes always hang them out of bed if in day have to find cold spots on the floor CTS Restless/spasm legs Shakes Cramps Temp control unstable sweating in bed shivering cold cant get warm and hot burning feet Weakness pain sometimes can’t walk and clumsy walk into things alot Fatigue bad some weeks leaving me bedridden Unexplained Co-ordination Dizziness, falls Weakness in legs severe need sticks and scooter some days joint pain right side have steroid injections Constant low blood pressure noted in all hospital stays Insomnia Bladder probs Bowel/stomach probs Bowel surgeon has just done a referral to neurology last week and I’m a bit scared now any ideas if my symptoms fit MS, Parkinson’s or anything else but I’m worsening each year and felt like I’m loosing it with all these symptoms and don’t know what’s wrong with me and I have no one in the world to talk to I am so alone 
sorry to trouble you guys I’m just lost xx
Hello and welcome 
We might not be able to tell you what’s wrong, but we are certainly here to talk to so you are not alone any more.
The biggest problem with neurology is that there are literally hundreds of conditions that share very similar symptoms so, while a lot of your symptoms are found in MS, they could easily be due to something else. The only thing to do is to keep an open mind, see the neuro, get the tests and then see where it takes you. You’ve coped with so much for so long Hopefully this new referral will lead to better support and treatment. It can take a while, so hang in there!
Karen x
Dear Jbee - I thought I had a long list and that I was being brave in the face of adversity. Clearly I know nothing. And all those awful things the doctors treat as individual illnesses and they never seem to put two and two together. I cannot offer any helpful advice but your post is helping me to put my troubles into perspective. Good luck. And like Karen says - hang in there!
Phill
x
Good luck I hope you find some answers and the help that you need xx
Thank you so much for your kind words they mean alot… It’s just a daily battle surviving the day to the next I just need some answers and I’m hoping the neuro will be able to help me but there’s always a chance they won’t know either it’s just been a long road of loneliness, no self esteem, friends, family or social life it’s a miserable existence if I didn’t have my children (only 1 lives with me age 10 my reg Carer I think I would have given up on life ages ago now!) apparently the consultant says because of red tape he has to write to GP to get GP (who is useless) to refer me to the neuro as this is quicker and will be dealt with faster than if the consultant bowel surgeon does the referral how crazy is that!?? Has anyone else heard of this stupidity? Thanks again Jbee
Ps. GP didn’t believe bowel & bladder probs had to fight him for a year to get re-referral to my urologist and bowel consultants
Oh phew! you poor lass. i just want to repeat that you are welcome here, where we`ll do our best to offer you support.
It is true, there are 350 known neurological conditions, which often have over - lapping symptoms. So sometimes, neuros have to take extra care when trying to come up with a diagnosis.
I fell victim to this and was mis diagnosed more than once!
I`ve spent 14 years in bewilderment!
My latest diagnosis is incomplete and I think that`s how it will remain for the foreseeable.
Look after yourself and hang in there, yeh?
luv Pollx
Hi Poll I am sorry to hear you are still living in limbo it’s so hard not knowing what is wrong with you makes you feel as if you’re loosing it sometimes especially if there are lots of symptoms! If you don’t mind me asking what tests have you had and what does your neuro suspect do you have similar symptoms to myself? I understand if you don’t want to share xx What can I expect at my first neuro appointment when it comes? Thanks again for your support it means alot xx
wow Jbee, you are so brave, I am not able to offer you answers but I wish you some happiness,
x
Thank you guys I’m just so lost with it all and struggling I have been bed ridden since Friday I had two steroid injections into two painful joints toe & arm and I’m so weak and my legs are so sore heavy pins & needles and restless I feel like I want to cry as they hurt so much and hurt so much I just want it to stop! I have a numb head at the back too I have no friends or family and feel so isolated all I have is my 10 year old son but he can’t understand how terrible I’m feeling this is definately a relapse of some sort! I just want some quality of life back I slept all day from 10am till 2.30pm and still felt as bad as I did first thing I hope my neuro referral is soon dont know how much longer I can go on like this… Meant to ring my OT for help today but didn’t even have the strength to talk to her about it all x x
Can your GP give you something for the pain?
Do try and call your OT tomorrow.
Kx
Hi again Jbee - this reply is really about the healthcare politics that have been going on and my opinions about what has happened to me but I hope it makes some sense in terms of your issues about referrals: the stupid referral business has happened to me and I asked what was going on - I was eventually told by one doctor that it is to do with budgets - they just tell us it is to do with speed to shut us up. As I now understand it and I am not an expert - the government made changes that put control of treatment budgets in the hands of GPs. If the hospital department makes the referral internally they have to pick up the tab. Because of their loss of control of treatment budgets they feel they have no choice but to send you back to your GP. This causes us stress, anxiety, and in fact slows everything down.
Do you laugh when you see these ‘wonder GPs’ on tv.? They are, bright, friendly, switched on, patient focused and so concerned. Where can I get one of them?
The speed of access thing relates to the new ability of the GP, in theory, to guarantee a hospital appointment within two weeks, and I presume this was factored into the legislation to sweeten the nonsense with the budgets.
I had a serious flare up of PV last March and told the dermatologist about rectal bleeding - she told me that PV treatment options were urgently dependent on a visit to the colorectal clinic in the same hospital - but via the GP. In my opinion this examination should have taken place the same day. Anyway, to cut a long and still unresolved story short, it took me weeks and many phone calls to get an examination - the two week thing did not happen. Finally the clinic doctor told me I needed a colonoscopy followed by an operation. I have now waited 7 months for the colonoscopy appointment - nothing. Basically, Kings have lost me in their system.
So I, and I bet most people on this site, have been through similar nonsense - my GP is not great and looks at his watch to make sure I am not getting more than 7 minutes. There is nothing worse than going to the GP and telling her/him that you want a referral to a hospital specialist on the say so of someone else at the hospital. It makes me feel like an errand boy rather than a sick patient struggling to take responsibility for my health in a partnership. Why don’t the consultants tell the GP to make the referrals we need - surely they could do it there and then with an email? I am nowhere near as unwell as you are and I find this stuff very hard. It is not only difficult physically and emotionally to deal with these people, it is also difficult to believe they are paying any attention at all to what is going on. They are in crisis themselves.
Similar nonsense happens with prescriptions, there is utter confusion about which drugs I should pick up from the hospital pharmacy, which ones should come from the GP and once again there seem to be budgetary concerns at the bottom of it. My PV consultant cheerfully told me that it was much better for me to get drugs via the GP. Well, no it isn’t - if I have travelled to the hospital it is better to pick up everything in one go. High street pharmacies are often baffled at the exotic stuff, or need to make a special order for it.
Time and again hospital doctors make errors in prescriptions and this creates queries that the hospital pharmacy can resolve in an instant. Having to go back to the hospital to tell them that their prescription is unclear is no picnic - I have been snapped at for this. Daftest of all is where the hospital pharmacy gives you something like 1 month out of three months supply of a drug to make you start using the GP for drug top ups.
When you are so incapacitated it feels cruel to be made to endlessly go around, to queue up for things, to untangle muddles and to give the same information over and over again.
I am sure nothing I have said here has made you feel any better. It sounds to me like parents in your situation need a support network. Have you found anything out there? Perhaps someone here has some ideas but I can see that without family support or close friends you are in a very isolated and difficult situation. I do not have children so I cannot offer any experience. I do remember as a young child plaguing my poor mum when she was sick. I can imagine how difficult things are for you. I hope things start to get better soon.
Phill
x
Hi again.
My symptoms are partly controlled with meds.
-
unable to walk at all
-
spasms in legs and feet
-
bowel and bladder misbehave quite often!..oxybutynin for bladder control and movicol for constipation
4.nerve pain…amitriptyline
My current diagnosis is not expected to change again.
The tests i`ve had are;
4 MRIs, 2 LPs, 2 EMGs, VEP, bloods
It is spinal cord damage/unknown cause
At your first neuro appointment, he/she will take a full medical history and probably do a physical examination.
Write a list of symptoms and questions, but try to keep it brief if possible. Neuros take notes, so be clear on main symptoms which you are having now. Good luck.
luv Pollx
It must be horrible for long term limbo-landers, i was in limbo for only 6 months. Wish their was more to help us all. Even just reading a few of your symptoms i can tell you have so much harder than i do. I can only offer advice that Poll has already given. Write all symptoms down. I have a diary that i write daily symptoms and one i write all symptoms that seem to be perminant.
Wish you all the luck in the world,
Hi Jbee x I was in tears reading your post x I’m so so sorry that you are going through all that and feel so alone with it all xx
Like lot’s of people in limboland emotionally you tend to go through very very low points, low points, and not so low points - very rarely any high points
Same as the others all I can say is use us - there is always someone here xxxxjenxxx
Hi everyone thanks for all your kind & informative words… Since speaking I have been really poorly confined to bed still no further forward GP refused to do repeat over the phone for complan drink so I called and spoke to him today said how bad I was feeling and I’m fed up with constant probs with my scripts and him refusing to do certain things while I know he pescribes one of the things I need to drug addicts!! But not me because of the expense how sickening is this!!! I was in tears on the phone saying how bad I feel and that I have been bedridden for weeks and he just hung up on me!!! going to email my occ therapist for help as I have had no help with personal care and not washed/showered for over 3 wks I’m too weak to do it and my son has been to busy with 8 lots of homework set each week bless the boy was still doing homework at 9.30pm I had to tell him to stop and carry on with it tomorrow… Feeling so desperate now I can’t carry on like this someone has to help us! I hope you guys are doing okay? No sign of a neuro referral from GP seen the bowel surgeons letter to GP saying neuro referral but still nothing
hi jbee
I’ve been a limbolander for 12 years, but I’m lucky that I have family around, you are so brave, the only thing you can do is keep going, even though it’s a struggle, on my bad days I still have to get up and do the usual school run and sometimes my vertigo is not very helpful, I’ve driven with buckets on the seat and allsorts trying to do the school run. Our kids are what keep us going and some days the only thing I get up for.
Nothing I can say or do will help but know that you are not alone, there are lots of us in the same boat with varying degrees of disability and symptoms.
julie x
Having never been in your position, I’m not sure about how best to proceed, but I think I would start with a phone call to PALS - your GP’s behaviour sounds outrageous and someone official needs to step in. I think I would also try speaking to the GP’s Practice Manager though - maybe another GP at the practice can help? Adult Social Services might be able to help too? You can usually get through to them by calling the local council office. If all else fails, get in touch with your MP. It’s amazing how many doors open when an MP starts to apply a bit of pressure!
Good luck!
Karen x
Jbee,
Just like everyone else, I wanted to reach out and give you a cyber hug. You really need one (or lots!). What a failure the NHS is if its beaucracy lets down patients in this way. I think Karen’s idea of contacting your MP is a good one - we had to do this (about another of my children) and his call made all the difference - the NHS staff suddenly started to do their job properly.
I would also suggest you call your Children and Families team - social services. They should be able to help your son through their Young Carers workers as I imagine he needs some support too. Social Services ought to be helping you too - it would be well worth a call. If you could have someone in to help you shower, or pick up prescriptions etc, that alone would help you feel a tiny bit better.
I know it might be horrible to call all these people and ask for help - but you deserve it!
Best wishes
V