Don't know where to turn.

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Hi all, hope you don't mind me popping and saying hi having a rough time at mo and not sure what to do.

I'm 32, married with two girls, been poorly just over a year now, I have many symptoms like shakes, forgetfulness, tried easy, muscle spasms, but my main problem well two really is the losing the use of my legs, the top half becomes weak and my news bend, bum sticks out, lucky if I can lift legs or even feel them until they become stronger again. My bladder also stops working when this happens, I hold my wee for ages, don't matter if I sit on the loo nothing happens. We had got used to the leg problems as it was happening every 8-14 days and lasting about 4 days, but over the last 17 days I've been able to walk normally for 6 of them which Is unusual. My husband is now worrying more as he has to go to work but I can't look after myself we don't know what to do, does anyone else suffer like this. I do have disc degenerate disease but been told that would only cause pain. Doctors have done test that come back clear and they don't seem to know where to turn now, they mention Ms then say no then go to Me, not sure they have a clue. but don't seem to want to help, feeling like a burden at the top of a pile x thanks for reading xx

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15 Replies

  • Posted

    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. 
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    • Posted

      Hi, regards the fatigue I only get that if I've had a crap night sleep, I can if done much for a couple of days feel like I need a day of rest. But regards the leg weakness it does not matter if I've sat and done nothing or walked and done housework all day, it still happens, thanks for replying xx
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  • Posted

    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 ...

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  • Posted

    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
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    • Posted

      Hi, I think lumber puncture is next step after Ive tried these new tablets gapentine. I have catheter too so I can now let it out on my own, I should of put my muscles in my bladder and bowel sometimes don't generate pressure to push/relise. Thanks for replying xx
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  • Posted

    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
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  • Posted

    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.

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    • Posted

      Hi both my labours where easy tbh, and they are now 12 and 8. Regards the pain, I have the odd days whilst I can walk where I'm in pain, but most of the time it's the crampy leg feeling, it's not till I can't walk the pain is emense. My arms are strong just get pain in one armpit. I've even ruled out of a trapped nerve, I have a bulge in t7/8 but says that's not the problem. Thanks for replying xx
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  • Posted

    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.
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    • Posted

      Yes; I, too, am surprised that they have given an "in/out catheter", without giving you a diagnosis....tha t is usually the "last resort", for patients who have "no" bladder control (eg Paraplegics etc), as the next possible complication, could also be bad UTIs.....your situation is very interesting.....am really awaiting what diagnosis they do give you??      Bron
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    • Posted

      Hi Lynne, I have to use the catheters as my detourso muscle does not generate the pressure to release the wee. I also go the over way sometimes too where I can't hold my wee and causes incontenance, thanks for reply xx
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    • Posted

      Hi h3n41:  I really feel for you....you have soooo many probs (seems like much more than I have to put up with)...and there are times that I feel sorry for myself....it only goes to show us all, that when people say, "there is always someone worse off than us", it's tooooo true. Please keep typing on this site, as it will do us all good to keep this statement in our minds....your issues, I would not like to have !!   to someone who does need all the TLC that she can get....it's coming from me, and I feel from all the others on here too.     a gentle hug.....Bron
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    • Posted

      Thank you so much, your words where so kind, and I think there are many times you could crumble, but my main reason for stay positive is my family, I don't want to show that I struggle with coping as if I start to show it then there will be a knock on effect with school and stuff. I have great friends too. Hope u have a great day, I'm in bed in pain with cramps legs, feel I may need to get up soon xx feel free to message me if u ever fancy a chit chat
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  • Posted

    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.
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  • Posted

    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. 
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