I will try and keep this as much to the point as I can, I find myself, like many of yourselves stuck in the land of limbo. Where I am not diagnosed but under investigation.
A little background info-I am 34 years old and until September I was a full time Carer for the elderly. I loved my job and led a very active lifestyle, I own 2 dogs who I would walk 3 times a day up to an hour a time and was on the go from day light until I finished work at 10pm.
Here’s where it all becomes long winded, Ive had knee pain and back pain since teenage years, I was diagnosed with Chrondomalacial patella aged 19 I believe when I ruptured my meniscus and torn lateral ligament in my left knee.
Over the years the knee pain progressively got worse as did the lower back pain, I attributed this to the way I walked, I waddle like a penguin due to knees which in turn damaged back. Knee caps twisted and ended up carving a groove out of each underside of knee cap and I was seen under the pain clinic team who in 2012 and 2013 gave me steroid injections into lumbar area to the knee nerve and in 2013 cauterised the nerve. This helped tremendously but I explained that now I realised how much my spine was hurting now I had removed one area of pain. I was on 1200mg of gabapentin a day and co codamol 500/30mg 4 times daily.
I can only describe the pain as crushing or compression on something in lower back which is only relieved if I lay down or lean forward. Although leaning forward only eases it, its agony doing the forward motion and then temp stops the pressure pain if that makes sense.
I saw two Osteopaths in 2013 and a chiropractor who both said I had disc problems (xrays were done) and to go to my GP and ask to be seen under the orthopaedic team. GP point blank refused and blamed heavy work load (I worked 7 days a week and 50+ hours on a quite week)
I then began dropping items such as pans of water, cups pens etc. I had a tremor in hands which I couldnt control and weakness in legs began. GP just wanted to monitor it.
- April 2014 I had terrible pins and needles in arms and hands and when I washed my hands it felt like my skin was burning.
- May/June I had a vibration sensation begin in left thigh which ran to my shin and was like I had a mobile phone in a pocket just constantly buzzing. This went on daily until October.
- Around August I was mixing words up and unable to speak properly-I once was trying to say dinosaur shape I said dipe the two words couldnt be seperated. I would get words wrong such as dinner is in the garden rather than oven. Not muddling similar words ie fridge with oven but actual very different words such as oven and garden. I struggled to remember clients dates of birth, addresses and if I had locked their door or turned off the oven. It reached a point I forgot names.
- GP initially on the 11th August said I need to see a neurologist and a orthopedist for the ongoing back pain.
- September 6th I had an MRI of lumbar spine done.
- September 7th I woke up unable to move left leg. It was a dead weight and I couldnt get comfortable in any position and was out of my mind with pain. I felt I had fallen down stairs and hit my sacrum it was that sore to touch. I was taken to A&E who were very good with me and managed my pain but had no MRI results and thought it was a disc problem and to wait on report. They organised physio to be done and I was signed off by my GP.
- 18th Sept I saw a physio from the muscular skeletal Clinic who told me discs in lower spine all ok but prolapsed in T5 but as I wasnt complaining of pain or problems higher up they just dismissed it. She couldnt fit me in for 8 weeks so I went private in the mean time.
- 19th Sept I was prescribed tramadol for the pain and I began getting awful headaches. Ive had them every day to date and was prescribed 10mg amitriptyline for them in the beginning of Nov but it hasnt helped much. i weaned off the gabapentin in October and the codeine as nothing was helping pain wise and GP said not to take if no relief.
I went back to work on the 9th November against my GP wishes, she told me I was unable to do a physical/manual job any more with my back and to change careers. That wasnt feesible at the time and as I was a single mum at the time it wasnt an option. Intially I went back on light duties and was managing to keep going.
Then my work load increased and on 4th December I was walking with a terrible limp as my left toes hurt and my leg was heavy once more.
5th Dec I wake up and notice I have a very red big toe which is obviously infected and I was shocked at how white my toes were. I wiggled them but nothing happened. I felt them and my foot was ice cold.
I struggled to get round work and by lunch time I couldnt lift my foot on the clutch and I couldnt raise my leg so the following day I made an appointment with GP who prescribed antibiotics and said if toes no better in a week go back. If I couldnt pass urine or weakness got worse to go straight to A&E.
On 8th December it was so bad I couldnt walk and the pain in spine/pelvis was the worst its ever been. I went to hospital on the advice of my physio (i rang her) and A&E admitted me pretty much straight away.
I spent 4 days in hospital with leg weakness getting worse and being on oramorph 2 hourly.
After 2 days I was given an MRI of lumbar spine as they thought a disc had ruptured. The ortho team came round on 3rd day and said from a surgery pov there was nothing to be done. No obvious reason to the symptoms and to go home and rest. Day 4 I was d/c. I spoke with Gp when I got home as I had yet to be seen by the neuro team despite first referral going mid August! I ended up paying privately to see a neurologist on 22nd Dec.
Explained all the above to him, he booked me in to see him again after the new year and I saw him 8th Jan where he arranged an urgent MRI of brain, cervical and thoracic spine. At that point my foot has been unresponsive for 5 weeks.
Report from him to GP was the following :
- Functional gait with stiff left ankle and leg, only just able to perform heel to toe ( I fell over doing this) stand on toes but not heels.
- Both discs pale-- now I assumed this to mean discs in spine, as thats what we were always discussing but apparently its my discs in eyes I found out yesterday!!!
- unsustained gaze evoked horizontal nystagmus no INO (internuclear ophthalmoplegia)
- Tone increased in left leg variable giveway weakness,
- leg reflexes brisk ( i HATE reflex tests its like electric shocks)
- unsustained clonus on left leg.
Yesterday I saw him for the MRI results, he was very brisk in what he was saying and we were in there no more than 5 minutes. no lesions or tumours which is excellent news but admittidly wasnt something I was expecting or even considering. No signs of MS-this was my biggest fear. Spinal results all came back negative/clear no signs of any damage what so ever.
Basically he feels ive had an infection which has caused damage to my nerves and effectively paralysed my left foot. He feels it will get better, he couldnt give a time frame and has referred me for a neuro physio. When i took the paper work out to the desk she exclaimed oh hes discharged you from clinic. That was never mentioned I just assumed I would see the physio then back to him.
My biggest gripes/concerns no blood test I had done in the hospital-some done twice a day ever picked up an infection. No blood tests done prior or after have picked up an infection.
Where is the site of infection? Brain? spine. If so my CSF hasnt been tested so ho can he be sure 100%
How can he be sure its not MS when a lot of everything else points that way and I have read up a little more today on how an mri can miss it. Even more so the pale discs in eyes, thats not something that just occurs its normally a marker for MS or brain tumour.
I booked an eye test today based on the nystagmus getting worse and shes told me I am not safe enough to drive now as its progressed to a point where I lose track of moving objects. shes also said the discs in eyes were clear at my last eye test in sept so thats a new thing. All she could suggest is to go back to GP when the Neuro report comes back and go through it all with her and see what she suggests.
I just feel now that he doesnt believe me when I say I am in this pain and that its all in my head. Family have reacted that I seem to want to have MS, but i am trying to explain I just want a reason, something to validate to others exactly how I am feeling as I now feel people think im making it up.
Since dec I am unable to walk far at all, I need a wheelchair if I leave the house (Ive bought one) and I find it hard to even walk up the stairs. My legs just fatigue so quick and collapse under me. the pain in my spine peaks when I am upright. i cant even eat a meal at my table as being upright hurts so much but leaning forward means I cant eat. Ive lost almost 2 stone since Nov despite lack of exercise and eating normally. my whole life has changed dramatically and I just feel im slowly falling dpwn a hole. Losing the “right” to drive today has been a final straw. I havent driven since my foot went dead but had banked on getting an automatic after seeing the neuro so I could still at least have some independance. Now thats gone too.
today I just feel Ive hit a self destruct button and no longer care what happens. Ive never felt this low or this way before at its terrifying. Gosh I am so sorry that is SUCH a huge essay. I tried to cut it down but at the same time I felt I need to explain everything as it may mean something ot someone???
Thanks for letting me just pour it out. S x
My first piece of good news in 7 months.