paralysis of foot, severe back pain, weakness with headaches. different diagnosis.

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Painful lower back when upright began in my mid teens and saw a chiropractor for a couple of years for that around early '90s.

Along side this knee pain became an on going symptom/side effect, hurts to have knees bent when kneeling and crouching on floor hurts within 30 seconds of pins and needles in feet and legs which increases to heat.

Damaged lateral ligaments in both knees early 2001 (ran up a flight of stairs left knee gave way, on crutches for 6 weeks and did the right leg in trying to get in a car on crutches!!) crutches for almost 3 months.

Physio at the time got the consultant orthopedic to do an mri which showed also small tear in meniscus. They noticed my knee caps where out of alignment also and was creating a new groove under knee cap. Repeatedly had knees taped up and they gave up after a while trying to adjust the knee caps. They put it down to Chondromalacia Patella and said re adjustments to life would make it bearable..... I was put on various meds over the years, co codamol, naproxen, gabapentin. noretriptyline.

Over the next 10 years I put up with knee and back pain. in 2012 I saw the pain clinic who gave me a left sided injection of steroids and anti inflametaries in lower back and in 2013 he did both sides a lumbar sympathectomy and burnt/cut the nerves to knee.

in the last 3/4 years Ive seen 3 chiropractors who all told me to go to GP and be referred to an Orthopedic team for the back pain. I also saw 2 osteo's who also said to speak with GP about it. Saw GP 3 times about the pain and what other professionals had said and each time refused a referral/referral was never sent.

I can remember around 5 years ago at work I would have trouble with my hands trembling and writing care plans. Difficulty changing bed sheets/duvets as fatigue in arms. I also had the odd sensation of not feeling my left foot below my knee and feeling unsteady on it when going up and down kerbs. At this point I was walking around 15 miles a day both with work and dogs. Mentioned to gp at a review and she just said to monitor it.

1.April 2014 my hands began to buzz and tingle as if I had clapped my hands together very fast and hard. If I put them in water-hot or cold it was like they were burning. Had trouble again with fatigue in arms with showering clients and making beds.

some time in May '14 my left leg began to buzz like a mobile phone was going off in my thigh. This continued daily to October. It was worse when driving and holding the biting point and Id often stamp my foot in footwell to get the feeling back-it wasnt numb as such but asleep??

Along side this my memory was getting worse, couldnt remeber door codes, dates of birth for clients and names of medicines etc.

Never had that in the 8 years previously in the job. I also began muddling up words and saying the wrong word completely not just a similar word but one that made no sense. I also stutter somewhat trying to find the right word and can forget what I am saying mid sentence! Husband notices this the most and I do it daily. He says I get a brain fog. I am more aware of it when I am tired.

saw a Gp in the August '14 she said I needed a neurologist and orthopedic referral. She first noticed delay on reflexes and moving toes upwards on Left foot

Sept 6th had mri, I had been on a dog walk that day and found it very difficult to keep up with the group of us, even a lady who was 3 days overdue was way ahead of me lol!!! First time I really noticed a struggle walking a distance I had done many many times previously.

Sept 7th woke up feeling I had fallen downstairs, my whole pelvis and sacrum hurt as if bruised and mobility was poor. Left leg felt heavy and got heavier as the day went on. By 3pm I couldn't sit or lay down comfortably and leg was almost impossible to move. Ended up A&E and after a cocktail of drugs I could lay flat on my tummy. They noticed the lack of movement in left foot but all they could offer was if I couldnt wee or became incontinent go straight back.

GP signed me off for 11 weeks and prescribed tramadol 100mg twice a day. They took me off the co codamol and gabapentin I had been on for the previous leg pain.

Headaches began 18th sept and I initially blamed the tramadol, came off all meds for nearly 3 weeks to see if made a difference, none made. GP prescribed Sumatriptan which didnt help and Amitriptyline which helped a little.

Back pain on going throughout, leg began to ease up after 6-8 weeks and physio.

Returned to work 9th Nov, leg began to get heavy and buzzing again, by 5th Dec I woke unable to move toes or ankle. Spent 4 days in hospital who ruled out lower disc problems and it was "unknown" discharged and went private to see Neurologist.

It seems Ive had lots of little bits going on over time and each time its got a little worse or lasted a little longer. this time since december is my longest bout of fatigue and pain.

Private neuro did a brain and full spinal MRI. results is no tumour or ms. He has said its an infection which has wiped out body and will take time to recover. Hes optomistic I will recover fully. GP says I may never get better!!

Before learning to drive '13 I had eye test in 2012 and needed glasses for reading and distance was fine.

I had my eyes tested again in July '14 as 2 years were up, no change to prescription.

When I was in A&E in the sept they mentioned getting eyes tested but I cant remember why but I remember telling the optician they had told me, maybe I was getting headaches then?

That optician wrote me a letter to take to gp asking to see the ophthalmologist but that never materialised and when I saw GP last thursday (12/02/15) she found the letter that had previously been missed by the gp and promised to send that asap and chase up mri report. 2 days later they had sent a letter and I am booked in to see the eye clinic team on 24th Feb at RSCH!!

Neurologist noticed eye issues but didnt explain them he just kept repeating the tests of focusing on his fingers and moving things.

On his report letter I got he wrote "both discs pale, unsustained gaze evoked nystagmus to the right also seen on fundoscopy"

Went for another eye test on 30th Jan after seeing neuro who agreed with what he has written in letter and to discuss with GP.

Ive noticed cars jump when driving and things moving cause me to refocus a lot and can be a little hard to judge distance. I see things out the corner of both eyes jump around such a phone screen or stair gate bars. If I wave hand in front of face it seems theres several hands in slow motion causing a shadow effect. I cant read this text with just right eye its too blurry but left eye is crystal clear. Optician said im no longer allowed to drive.

I saw GP again yesterday (19th feb) and she says i am puzzling and she needs some time to go away and really think about what to do next or treat this. So for 2 weeks ive to keep (another) diary of everything I can and cant do. my pain score and mood. Then see her again in two weeks and go from there......

My biggest concerns are no one knows what is wrong other than saying its an infection. But they never say WHERE it is or WHEN i got it. They say its since I woke up in dec but what about the weakness is September? They havent treated me with anything for an infection and Ive had LOTS of bloods tests and not one has shown infection. Including whilst in hospital.

Ive had to quit my job as a carer as I cant drive and I am now needing a wheel chair if I leave the house as I dont have the strength to walk far and my back pain is too intense. I have to sit leaning forward to ease it. I also cant raise legs properly to walk, I shuffle and swing my pelvis side to side rather then hips frwards and backwards (normal walk)

Im 34 years old and a mum of a teenager and this has changed all our lives. husband has to fill in the gaps for me when im strugglign to think and speak and he needs to remind me about meds and support me with household tasks.

Today gp has sent me a letter saying she thinks my blood glucose is fluctuating too much and causing all my symptoms and if I get that controlled I'll be fine!!! So now is it no longer an infection and its insulin based???? I am so fed up.

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5 Replies

  • Posted

    I have also suffered leg spasms for the last 6 years and electric chock like feelings under my skin. I also get itchy bones in my thighs and shins before the spasms occur??? This is daily.
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  • Posted

    Hi Sarah, Im so sorry for all that your going through dont give up !!! I know its hard but keep pushing , YOU NEED TO REALLY FIND OUT WHATS GOING ON Please let us know how you are doing stay strong . I know how you feel about 15 months ago I went in for revision hip replacement , as I have had hip displaysia from birth I have scaitic nerve damage from surgery , and i lost my job I take Tramadol everyday 2 to 3 times as its the only meds that i can handle I do get headaches sometimes . Now im very depressed just trying to push forward with positive attitude . Im going to see neurologists to see what or if anything can be done im also seeing pain management doctor , and physical therapy 3x week .

    I hope you get some answers soon let us know

    take care

    Jackie

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  • Posted

    I feel for you hunny, I've been ill for 10 years with every symptom from head to toe and they put everything down to fibro, OA and my doc is puzzled with me so your not alone I'm seeing my doc atm for muscle spasms head pain eye pain watery eye tremors ect ect and she still doesn't know lol I think we know more than them lol after all it's our bodies that are feeling all the pain. I hope you get sorted soon as I do. Take care x
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  • Posted

    Here I am, still no improvement and Gp still none the wiser! My walking is still incredibly painful and restricted. I see the neuro physio on the 24th so I am hoping for a bit more of a plan and insight as currenlty its all still uknown. I have been cleared to dribe if i am physically fit enough and I have tried a few short journeys but I cant concentrate enough and I hate sitting up straight in the seat. 

    My moods are getting far more lower and gp just says to think positive and find something to make me laugh as thats great medicine.......I didnt know whether to laugh, cry or walk out when she said that. She began talking of a pain clinic but then became distracted. I will push for this next time. Its disheartening having to fight to be believed. She does however agree my mobility is v poor and my gait is painful. x

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    • Posted

      I now have a diagnosis. Neuro physio was good. She told me I have functional neurological disorder (FND) and told me this is what neurologist had diagnosed me with.....I explained I was told it was an infection.....she was apologetic as she thought I'd been informed. I hadn't sad

      She gave me some exercises to do and have me a website, www.neurosymptoms.org and said go home and look at this and it will explain everything. She said join the groups and get as much info as you can. She couldn't offer me anything else. Her explanation was its like having ms but without the damage to the brain.

      I wrote to my gp to update her as between us we'd still not had a diagnosis. She wrote back to me saying she knew all along I had FND but didnt feel the need to tell me..... I am floored by this admission. She had me crying in her room scared out o my brains with what was happening and she knew all along!! I feel totally betrayed. She also refuses to amend my meds to what the neuro wants me on..

      So now I have answers but ive not a supportive gp to help me battle this. Its a very new diagnosis and the help is limited and often u are belittled by ignorance. Much the way ME and depression was for years.

      I just feel ive hit the bottom. sad

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