Feeling a bit lost...,

[Jo883]

Hi guys n gals,

There are so many times I would like to post but don't because because I don't have a definitive diagnosis. Diagnosis is sero negative connective tissue disease, lupus like. I'm on 2 x 200 hydroxy, 3 x 100g neurontin, 12.5 mg prednisolone. I guess I should be just happy that they are taking me seriously and prescribing the meds, before meds were prescribed and whilst waiting a year for my hospital appointment I could barely move, hurt in most my joints, fatigue, ulcers, hair loss, bakers cysts, livedo etc. I have suffered for years with mechanical spinal pain and have cervical spondylosis/radiculopathy also. I've noticed that when I'm having a flare it starts with fatigue and joint pain, hands, knees, toes, elbows, wrist etc but when the swelling/pain hits my neck I know I'm in for a rough ride - sometimes the pain is so bad it feels like my bones r breaking it's very sharp pain and usually at peak of a flare and I'm incapacitated with it. Along with this I usually get neuro symptoms. I ended up on the stroke ward in April, although not a stroke - I lost feeling in left side of body had left side facial droop and couldn't talk properly or walk without hitting the deck - it has taken me months to recover to this point. I have so many questions and no one to really ask, next hospital is November. I've just had a month long flare which I'm not really out of - I can think more clearly so I'm more compas mentas but pain is still there and worse as by afternoon/evening I have weak arms rheumy said carpel tunnel but I wonder is this inflammation or neck related, Is there any of you out there that suffer mechanical spine problems? Im not sure if this connective tissue thing aggrevates the spondylosis and causes neuro probs or my flares are affecting me neurologically now, on top of what I've described above, I still have tremors - like my head goes from side to side, my legs also do there own thing a bit and I use a stick to keep my balance as it's like someone kicking my knees out from behind. Since my hospital stint/stroke like episode the neuro problems haven't gone away and flare up with other symptoms - Im wondering if this is just progression or my prednisolone

is not high enough to keep this under control but I'm reluctant to take more as my dose started at 5mg and keeps going up. I also have noticed I have red thread viens on my chest neck area, no rashes as such, also on the sides of my jaw - the later I put down to the pred, but the chest v neck area I had before meds - this area would catch the sun more then the rest of me, r these fine thread viens part of this, I sometimes have these come up on the tops of my feet when I shower but these disappear unlike my neck area!! Can anyone relate to this - sorry for the long waffle, I feel a bit lost from time to time. Love n light Jo - mum of 3

[farmerfester]

HI jo883

your symptoms sound so very like mine i have the radiculpathy etc my reumi prescribed a nerve painkiller called pregabalin which works very well with the neck pain

the whole thing has been a real pain like you i have had a flare going on since may time

they have stopped me working full stop only 3 years to retirement .

hope it get more comfortable for you g

[Jo883 in reply to farmerfester]

Hi farmerfester - thk you for the reply xxx I was prescribed the Neurontin/gabbapentin by a neurologist - it is in the same family as pregabalin/lyrica. Same sorts of drugs, he said if it didn't work they would add topimirate which works well with neurontin - but it's another drug at the end of the day. I have almost been in a non stop flare too, I paid privately to see rheumy - which got my treatment started, he recommended neurologist because rheum thought I had myasthenia gravis cos face muscles were droopy and I couldn't speak etc - the neuro was a nice man but from what I can work out the radiculopathy/spondylosis is almost played down - I've been seeing an osteo for 6 years since the birth of my last daughter as she was the proverbial straw!! - suffered symphis pubic dysfunction, scoliosis, sacroliliac joint dysfunction - been put back together over 6 years, I couldn't function without seeing him, he's the guy that said I'm presenting like an Auto immune illness, actually he knows me better then any Dr as he sees me on a regular basis. I don't have many good days but fight hard for my family - I have increased my steriods today as I have that familiar breaking neck feeling - do you find that your lupus flares, aggrevate your radiculopathy or vise versa - I'm not sure what's what anymore. Many thanks taking time to reply - here if you need to chat xxx love, light and well wishes Jo

[Slowmo]

Hi there, firstly it's fine to use this site even without a definitive diagnosis, so no need to worry there. You really have been through the mill in recent years, many people have to go through many trials of various meds before becoming more stable, especially when the diagnosis is uncertain. Hopefully the specialist you see who knows you so well will continue to seek answers and solutions to your problems, they sound as if they're on the ball. Hang in there and hopefully things will stabilise in the near future.

Take care.

[Jo883 in reply to Slowmo]

Thanks Slowmo, I think it's harder because there is more then one thing going on.

Hard to unravel - the pred and hydroxy have helped loads but I seem to keep needing to up the dose of pred to be able to function the flares knock me for 6 - I know I need the help, never been a medicine person, but still reluctant! Perhaps I should go back to Drs and explain the tremors and wobbly knees and add the topimirate!! I can walk short distance ie in the home no probs now, but can't walk continuously - it takes great effort and concentration. Thank you for getting back to me - sometimes it's good to get it out of your head, helps to find yr answers or at least another plan of action!

Onwards and upwards well wishes xxx

[farmerfester]

yea most lupus patients are told we think you have lupus

jo i was admitted to hospital with the most horrific headaches had 4 mri,s 2 ct scans the neoro.s thought i had a stroke i asked them a few times to tell my reumi what was happening but no got home after 4 days about thre weeks later neuro docter asked me to go back in for a course off steroid infusion witch i did on the advice off my gp on the last day neuro doc say we dont no what.s wrong with you we have asked the reumatoligy

docs to come and see you thereumi that has looked after me for around the last 5 years arived looked at the notes amd examined me told them what the trouble was got me on the right med and that made all the differance have seen her since and she thinks i may need surgery on c spine so there we are g

[Jo883 in reply to farmerfester]

Farmerfester - it's hard isn't it - I do think I need another MRI of the spine - I had one 15 plus years ago which showed up the spondylosis and bulging disc in lumbar spine - I was in my 20's then! The neuro said C5/C6 the osteo thinks I have more damage further up as it gives me vertigo and tinnitus and I've had probs with vision also, he thinks it's affecting blood flow to brain, my spine really aches at night now - lumbar area hasn't been good for years - I have trouble hinging and feel physically very old at times - only 41!! The stroke unit also didn't know what had happened to me - I still couldn't speak or walk when they discharged me - they just told me to go see my rheumy! I was housebound for about 4 months couldn't drive or take my daughter to school or do anything - that was a bit of a black long tunnel and I'm thankful to be through it so I guess we have some progress

What are your thoughts on spinal surgery? My very best wishes to you xxx

[farmerfester in reply to Jo883]

dont no what to think cant find anyone who,s had it done i am retiring due to ill health so considering what i did for work as much as i enjoyed it ,it has to take much of the blame so should now slow the wear rate down a bit

[nanaber]

Hi Jo883 and welcome. I have a definite diagnosis of seronegative lupus. At first I was taking 400mg Plaquenil then 900 mg of Neurontin was added that was followed by 100 mg of Imuran.

[Jo883 in reply to nanaber]

Thank you for yr reply nanaber xxx I think a definitive diagnosis would help, I know it's rare - but there are sero negatives in lupus, RA, and APS so not unheard of - I have enough of the symptoms! At the mo the medication I'm on is not controlling my flares - I think I need more help - today I'm having real trouble neurologically. Sending you well wishes xxx

[Barnclown]

Hello Jo. Am vvvvv much feeling for you. Back in the 1990s I went through a long spell (several years into early 2000s) of symptoms kind of like yours in my late 40s. My infant & teen SLE diagnosis had been lost & I was being treated by osteopath & neurology + Alexander technique for these kind of symptoms. I'd had a big fall on my head at 7, which had set me up for spine probs ongoing, and these got more like yours in my 40s (I'm 60 today). The only meds I was given were NSAIDs and opiates & codeine: all useless but at least they made me groggy. I was very low.

By 1998 I actually had an NHS appt for spine surgery: a double cervical discectomy. The actual date took almost a year to come though. So, nearer the operation date, I insisted on a review with the neurosurgeon. I had read a lot about spine surgery and I was VVVVVVVV scared of the surgery and pretty sure I actually wasn't a good candidate..., cause consultants had told me that my spinal cord and nerve root were not actually directly involved in the damage in my neck....i just 2 slipped cervical discs causing facet joint probs....which are painful and debilitating enough, but don' call for radical spine surgery....well, I got my review....the neurosurgical registrar who examined me agreed surgery not appropriate (hooray) & sent me to the pain clinic (yippeee).

A wonderful pain consultant performed a series of diagnostic facet joint blocks which established I responded well to such treatment. Over the years that followed, I had several sessions of more permanent bilateral facet joint denervations, in operating theatre, carried out by my hero pain consultant to my cervical, lumbar & sacral spine. Yes, I also had to do A LOT of physio, and went on an antiinflammation diet, learn to strictly pace myself & ration all activity etc etc, but my spine pain & neuro symptoms did let up a lot. Now I can manage both sorts of symptoms with rest, gentle excercise and rationing activity, although the neuro symptoms do flare when i'm tired or stressed.

I'm not saying all this is easy or simple, but I'm suggesting you think vvvvv carefully about spine surgery....and ask your consultants whether your nerve roots & spinal cord are directly impinged by whatever situation your MRIs etc reveal inside you. My impression is that conditions like ours can take time to gradually improve....but we really really can improve!

Since I was finally re diagnosed with SLE by the NHS (2 years ago) hydroxy & pred tapers & Amitriptyline have helped a lot....I wish the same for you

Take care

[Jo883 in reply to Barnclown]

Hi Barnclown - firstly I would like to wish you a very Happy Birthday! xxx

Secondly I would also like to thank you for your reply. I've been having problems since I was 19. Today is not such a good day - I've just taken my youngest daughter to school - I have a disabled badge so parked as near as I could, I felt ok - clear headed, but my legs went completely 3 times, 3 kind ladies helped though, one took my daughter in and 2 helped me to my car! I've just phoned my Drs because enough is enough - I need more help, I now have pins and needles in my jaw, arms, hands and feet and I have tremors, my face has dropped and I have speech problems, the way my legs went today was as if my spinal cord was cut - very sudden - oddly it doesn't hurt but I didn't get any warning either - the only thing I guess that gives me an indication that things r going downhill is the ice pick pain in my neck - I upped steriods to 15mg yesterday which maybe why I feel clearer headed - why do they play down the neurological aspects of cervical spondylosis?? It's really helped talking to everyone - I know I can't go on like this - I'm waiting for my Dr to come back to me - going to ask for the topimirate the neuro prescribed should the neurontin not be enough and going to ask if he wants to see me in the mess I'm in - then maybe if I collapse in his surgery and look like I've had a stroke he may refer me for an MRI scan !!! I think they are penny pinching here despite these symptoms - no one has put me forward for an MRI of my spine - only then will I know what's happening to nerves, discs and what degeneration is going on where, I would only consider surgery if it was the last resort, nerve blocks etc I would consider if it helped this - getting to the point of receiving the right help would be good! It's a long journey! I wish you well and I hope you enjoy your day - the sun is shining here today xxx Jo

[Barnclown]

You're showing great courage, Jo! Take heart, keep pacing yourself & keep your resolve up: a gp has a responsibility to refer a patient to neurology for tests/scans etc re symptoms like these. If one gp isn't reacting appropriately, think about trying another gp. Or even change gp practice...from what you're posting here, seems to me many of us here have experienced similar issues re getting diagnosis & treatment. This all takes a lot of energy, focus & determination, sorry to say, and my feeling is that you have what it takes!

Many thanks for your kind wishes: my birthday was a lovely sunny day....

Take care - let us know how you get on

[Jo883 in reply to Barnclown]

Barnclown

I'm glad it was sunny where you were to, a little bit of sparkle, just helps somehow! I'm trying hard to keep myself up by my boot straps today! My Dr called but is leaving my surgery soon but thought it was important that I was seen by another Dr, we all know how exhausting it is to try to explain to a dr that isn't used to seeing you what has been going on. Where do u start kinda thing, even worse when your cognitively impaired. I mentally psyche myself up to try to be assertive and hold my ground without showing too much emotion. Which is ok till I talk about my fighting to take care of my family!!! Ok so the neurologist I saw privately wrote to the GP saying if the neurontin didn't help to back it up with 25mg of topimirate - I have researched this and I know that it is supposed to work well with N, however the GP has said it may affect me cognitively and mong me out, so has doubled my neurontin, from what I felt at the time he thought this would be better, but it's funny isn't it because how do I know?!! That's already a conflict with what the neurologist has written. I mean who do you trust - so I have doubts, he's is writing to the rheumy to try to bring appointment forward. He says my situation is difficult because I have more then one problem - I'm always being refered to as a house of cards!! The flares flare, when the joint pain hits my neck it causes radiculopathy and makes my arms Hands weak, then all the neuro stuff happens - he's kinda explained it as my brain trying to shut my body down because it can't cope with the pain and fatigue. I just don't know what to think anymore. When I first started the neurontin I felt really low which was a med side effect I nearly went back and said no this is changing my personality! But came through it, I'm wondering if it's going to be the same with this increase, as doubled evening dose and got up this morning feeling as if I'd drunk 2 bottles of red wine!! It's funny because I go through waves of really trying to do the right thing - eating healthily, no gluten, no dairy, lots fruit, veg etc. but when I flare I loose my appetite almost completely but know I need to eat to take my meds - so usually the only thing I can manage/stomach is whole meal toast - I always have good evening meal because it's important to me to cook for my family - even if I start preparing in the morning!! I'm definitely on the upward hill journey of diagnosis, so far sero neg connective tissue disease with cervical spondylosis and functional neurological disorder - I don't what to think at this point!! I have to say no one understands the battle unless they've been through or are going through it - I find great comfort talking to like minded people - it helps to maintain a semblance of sanity. so thank you for taking the time to reply. Sending well wishes xxx Jo

[Barnclown]

Boy oh boy do I know what you mean!

You've said it all

You have a lot going in in all areas of your life

This gp working to bring the rheumatology appt. forward is really good!

Take care & good luck