Don't know where to turn.

So sorry you're suffering. Do you have deep fatigue? Does it get worse after any kind of exertion? These are two hallmarks of ME/CFS. I'm pretty sure there are tests for MS. I believe a good rheumatologist will know if you have MS. Diagnosing ME/CFS is trickier, because there are no biomarkers for this illness. If all blood tests, etc., come back normal, then you can start thinking about ME/CFS. A good specialist, preferably an infectious disease doctor, or even a rheumatologist, can diagnose this illnes on the basis of symptoms. Unfortunately, we often need to be persistent to get a correct diagnosis, but there are good specialists who can help. 

Hi

your poor thing ..my advice be a nuisance keep annoying your GP keep getting referred ...your symptoms are unusual and as u know doctors are like mechanics they go for the obvious rule it out and work down the list..so keep pestering until you get a diagnosis..if you don't pester them they think your symptoms have improved ..

i am no expert but your symptoms could be treated if you knew what caused them and possibly halted or improved , but left they could worsen ..

feel for you , and I hope you get the help you deserve soon ...

Hi h3nr:   I'm going on your bladder problem, as a secondry symptom to your back....have you had a MRI, and "yes", I know that usually needs a specialist to order same...and I'd go to ED next time you have a Full bladder and can't pass urine....to them this is an Emergency...from there they will, hopefully, look at all your other symptems, and find out if there is a nerve pinching....this I think/feel is your main problem. To test for MS, the deciding factor is a Lumbar Puncture...the spinal fluid will have a certain  ?protein in it which is a Positive result for MS....if you do go to ED, maybe/hopefully they will admit you as an inpatient (reallly hobble/stoop over)...accentuate your problems, in order to get them to notice you.   I order for this, do you have a family member/friend who could look after the girls while these tests are being done?   You do really need to hav the bladder problems looked at, as retaining urine can cause many after affects, as the urine will start to Backflow up into your Ureters and then into your kidneys (if you don't get a bad Urinary Tract Infection first...which in itself can lead to Whole body Systemic probs)...so ys, please....don't just sit on toilet and hope it will start to dribble out....not good...go the ED next time.....we will all be awaiting your results, so let us know. please?     Bron

Hi, I have had MRI and Ms has been ruled out. I too have experienced leg weakness and I have everyday bladder problems which are now part of my fibro. I also have episodes where my muscles twitch and jerk. At times it feels as though I have an internal motor like a car idling; a constant vibrating feeling. Sometimes certain muscles have their own heart beat! I also shake and have difficulty getting the key into the lock and spill my tea. I find diazepam 2-4 mg helps to calm things down a little. Caroline

Are your arms still strong?  Are you numb or have altered sensation anywhere in the saddle area (underneath parts, bottom, perineum and lady parts area).  Have your bowel habits changed and do you still have bowel control?  Answering yes to these would indicate something is happening in the spine.  If you need to see a doctor again, I would have those answers written down, so you don't miss any out and state them clearly.  It could be a nerve entrapment or at worst spinal cord compression.  You don't mention pain, so hopefully it's neither.  

You don't say how old the girls are, or if you had difficult deliveries. Could it be related to that (epidurals sometimes cause scarring)

I hope you get the help you need asap.

l also thought it sounded like a trapped nerve or something causing both bladder and leg weakness problem.  lve a long standing bladder problem, when aggrevated it can cause a pressure feeling with pelvic and  leg pain, restless legs at night in bed, leg cramp at times. Following sciatica and xray showed disc degeneration, but l,m not aware of it causing me any probs or sciatica since lst bout, but if bladder prob aggrevated it can cause general pelvic pain and at worst difficulty walking due ot what feels like pressure pain in pelvic area, , but only for  few minutes, Seems unusual for catheter to be used without a diagnosis, l guess your saying or thinking its down to yourself not using you pelvic muscles, as that been suggested to you, l,d be very sceptical about that when no diagnosis is offered.  Think l agree that at the time your unable to walk try to get yourself into a and e, get a lift or taxi at the time.  If you cant get hold of family or neighbour to babysit your girls you could take them with you initially.  Best Wishes.

I agree with Bron.  In the mean time, please drink loads regularly to keep flushing it through as they are an infection risk and the last thing you need is a UTI and shed loads of antibiotics pumped into you.  Best Wishes, hope it's sorted soon.

hi,  l also echo what Bron stated. lve had catheters in a couple of times following surgery, for just hours or a day, and thought it hard to deal with, and also agree on uti,s, its the way l got one in that short time.  Glad your family keep you going, as they do, children especially, and youve someone strong to fight in your corner if docs become too complacent, as you shouldnt feel a burden, though l guess many of us  feel that sometimes on bad days, but your family still need you. l hope you get treatment that helps soon.