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In limbo

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 :

  1. 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.
  2. 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!!!
  3. unsustained gaze evoked horizontal nystagmus no INO (internuclear ophthalmoplegia)
  4. Tone increased in left leg variable giveway weakness,
  5. leg reflexes brisk ( i HATE reflex tests its like electric shocks)
  6. 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

I also forgot to add that I’ve had leg spasms for over 5 years now, my legs jerk and spasm each night and originally they said RLS but I don’t have the need to move my legs, they do it on their own accord. Its an electric shock. I also have spasms in thigh muscles which looks like a pulse and is small electric spasms. I’ve videoed one that ended up going on for 3 hours. This morning I had the worst leg spasm from thigh to toes and it was burning and electric at the same time. The feeling when you say someone walks over your grave, coupled with the burn when you over do sonething.

Hi beaglemum

So sorry to hear you are having such a difficult time. I’m afraid I can’t help you much, as I am new to all this, too, and my symptoms are far less severe. However, I just wanted to let you know that there are people out here who care, and who at least understand how awful it is when doctors don’t take you seriously ( one gp told me "you’re not anaemic now, therefore you don’t feel tired and dizzy). I suspect that at least some of my symptoms (dizziness going back over 20 years) are NOT ms, but by getting a referral to an MS specialist neurologist I have now had the dizziness taken seriously, and have been referred to a clinic to try to help me manage it.the jury is still out on all my other, more recent symptoms…

The only advice I can give you is to hang on in there. Keep talking to people when you need to (it really does help to get the frustration off your chest). But most of all, focus on getting help for the symptoms, and with coping with everyday life - don’t let them fob you off! You may have MS, you may have something else, or you may have several different conditions. Either way, you are clearly struggling and you need and DESERVE help.

Good luck, and I hope you get some progress soon

C

Xx

Thank you very much Welly Woman for your kind reply. Its incredibly frustrating and insensitive at times to be made to feel you’re making up what you are saying or exaggerating it.

My osteo said to me yesterday its not something I am making up, these symptoms and consequences of the symptoms are very real. Which made me feel so happy that someone has said yes I agree what you feel is real.
Shes told me to push for a 2nd opinion on the MRI report, although im sure a 2nd opinion will only say what the radiographer has seen so wont really change the diagnosis.
She doesn’t feel he can say infection without describing at least what form of infection/virus it is and has it left my system yet or need treating etc etc.

I do know if I walk into my surgery and say I want a LP or something more definitive I will get laughed out the room and told to not Google things. So for now I shall wait on my gp getting the report from neuro and go in and see her and discuss the eye sight problems.
I also need my pain management managing. My headaches keep me up at night and with it is nausea now.
I got the dose of gabapentin wrong in the first post, I was on 600mg am and lunch with 1200mg at night.

Feeling a little brighter than I was Friday, theres not a lot I can do to change whats happening currently so I just have to adapt and manage. I handed my notice in to work yesterday, I cant drive for the foreseeable future and I am unable to to return to work any time soon so I felt it was best for them all round if I quit, small family business keeping me on ssp for the passed 18 weeks since Sept isnt fair on them. Im not sure where I go now in regards to money, but right now my health is more important than that.

That is it really for now. I may come back to this post in the form of a blog/record of what’s going on and when. Thanks for reading x

Not much has changed since my last post. I saw a wonderful locum Dr two weeks ago who took my issues and health seriously, she told us to look into evoke testing and pushed us to get a 2nd opinion. She booked me into see my regular gp two weeks after that (3 days ago) and that appointment couldn’t have been any different if it tried. Regular gp says neuro is the best around trust what he says. My mri reports show no problems at all, ive since received the same report and it does show a few issues such as discs changed shape, two neck vertebrae have fused and degeneration. Gp wants me to write a diary for 2 weeks of everything and let her have a think on what it could be! She wouldn’t change my meds. Neuro report tells her to up my dose of amitriptyline to 80mg from 10! Gp never said this. She also did a finger prick test for blood glucose wbihc came in a little low at 3.8 3 hours after toast and a chocs bar. So now she thinks that’s casiing ALL my issues and wants me to change my diet??? Ive lost weight and eat healthy home cooked meals. I don’t see how she can blame the fluctuations in blood glucose on ONE TEST?? Today ive not got out of bed (its 530pm) between the pain in spine and my mood I don’t want to get up, I don’t want to eat and I just don’t care anymore. Depression is smothering me and even after crying in the drs ive still been told to just keep a diary. :frowning:

** to add, my neurophysio appointment has finally come. 24th march. I also see the ophthalmologist on Tuesday after locum Dr found the missing referral in my notes from sept!!!

hi beaglemum

so sorry to hear of all your difficulties.

it sounds a lot worse then ms, at least we know what is going wrong and why.

keep on at the medics because that is what they are being paid for.

not very good of your doctor sitting on the referral!

the very least he/she can do is to take you seriously.

ask for a referral to occupational therapy. the OT will look at each room in your house and ask where you have the most difficulty.

dropping pans is dangerous and the OT will look at ways of making it safer.

can you manage in the shower or bath?

baclofen is good for spasms.

you cannot ignore the low mood although it is extremely understandable.

ask gp for CBT cognitive behaviour therapy or maybe anti depressants.

i wish i could come and give you a big hug but cyber hugs will have to do ((((hugs)))))

carole x

hi anonymous

you have tagged onto someone else’s post and you will get more replies if you start your own.

just use the new thread button at the top of the page.

your symptoms are sensory. i had these and still have them.

ask for some neuropathic painkillers which often ease the numbness.

good luck with the diagnosis.

carole x

Have I, I’m new to all this.

thanks for replying tho, does that mean I’m going to stay numb like this.

im worried as I have 3 young kids

thanks x

Ive had a little positive news today, I was seen by the ophthalomist and optometrist in hospital today and both have said as long as I am not seeing double (im not) and mentally and physically I am up to it I can drive :smiley: My first piece of good news in 7 months.

My nystagmus is from birth and a result of a corrected squint, why its never been picked up in recent eye tests is unknown…

She has given me two exercises to do to help strengthen muscles around the eye to help stop the eye rolling upwards and then if that’s unsuccessful there is a eye surgery I can have to sort the muscles out. Im back in the clinic in 6 weeks to recheck everything.

Health wise my eyes are healthy, apart from the floaters. so that’s really reassuring news. Not sure why the neurologist has reported ive got pale discs in eyes? She said if she had seen me today she would have sent me for brain mri and neuro assessment but because Ive done all that prior to the appointment there wasnt much point.

Sitting in the eye clinic for 3 hours has really hurt my back though and my legs are incredibly weak. within 30 seconds they are jelly like and burning and I struggle to stay upright.

I ended up spending all weekend in bed, physically I felt better for it Monday, mentally it did me no good as alone with your thoughts makes things worse. So hubby took me shopping last night to sainsburys (woohoo lol) and getting about in the wheel chair really does lift my mood and I think having that bit of freedom and independence without being crippled in pain makes all the difference.

Not knowing whats wrong is incredibly frustrating and I cant help but worry theyve missed something or overlooked something.

As I have said having a infection label is fine as long as I know What and where it is. I have googled infections on spine/in brain as they have suggested this is and all results say it needs antibiotics and depending on the blood results the treatment differs. My bloods have never found the infection :frowning: it also names the types of infections, something Ive not had. No time scale has ever been given so I dont know how long I am to be this way or to what degree Ill recover.

Its almost 3 months since my foot stopped moving. This is with physio and osteo and rest. I miss my job so so much.

Me again, I saw my neurophysio on Tuesday this week. She has told me he neurologist has diagnosed me with functional neurological disorder (FND) It’s characteristics mimic MS but without the damage to the brain being the cause as in MS. So my concerns for ms seem founded but obviously its not ms. Its a problem with the software rather than the hardware they say. My brain has stopped communications with parts of my body. Theres no quick fix, its not curable but is manageable with physio and medication Gp won’t up my amitriptyline like the neurologist wrote to us about, I’m on 10mg, he wants me up to 100mg so with physio advice I dropped a letter in the surgery yesterday just updating on this weeks findings and how physio questioned why the amitriptyline hadn’t been increased and also she told me to ask for referral to a pain clinic as the pain isnt being managed at all. Ive since sold my car and awaiting on an automatic so I can drive if needs be. My days are still spent fatigued and isolated. But knowing what’s wrong has raised my spirits. U begin to think its in your head. If anyone wanted to read about FND it crosses over into fibro as well as a few more neuro illnesses. Its www.neuro symptoms.org his is what the physio told me to google and send to gp also. X

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