Hi Margaret. Thanks for your reply. I'm just coming up to two weeks and the improvement is very slow but sure. It's my wrists and fingers so I have been a little inpatient. Great to hear about your relief. Cheryl x
Thankyou, i really hope this will get sorted.....eventually.
Only 4 days to go until my appointment and it is needed as i now have bad lower back pain caused by urine infection i think, having to get up to go to the toilet on average 3 times a night, if my bladder too full my lower back hurts for hours after i go to the toilet and did have blood in my wee at work but that stopped thank god, could do without this as don't sleep well anyway!
will post up what the dr says.
Thanks to you lovely people i at least know what tests to ask for.xx
Just a thought, when I was really struggling at the pre diagnosis stage, I was put on Amitryptiline to help with sleep. It was my saviour, because getting a good nights sleep helped me cope with the days. If you haven't already tried it, it acts as muscle relaxant, pain killer and anti depressant. I'm taking a really small dose each night at the moment while I am waiting for my new medication to kick in. Might be worth suggesting it when you see the Doctor. Good Luck Jane xx
So here is what happened to me at my appointment today.
Went in to see Dr explained that i am in pain everyday bad enough to make me cry and keep me up at night blah blah blah, he got on his high horse and started to make the appointment all about me wanting pain relief and stating that the pain i was having was withdrawal from the painkillers (funny because i have had the painkillers) he looked at my records and said that my ANA had been tested and was negative and said that i seemed rather angry to which i replied yes i am try living in pain everyday and not getting anywhere when you visit a Dr.
He then asked me to take off my shoes and the first thing he said was are your feet always that colour....to which i replied yes, he then tested for a pulse in my feet and asked if i could feel him touching them, i said i could but only faintly, i also told him that a few weeks ago i had put a boiling hot water bottle on my bare feet and i couldn't feel it burning.
He said i have a huge corn on the ball of my foot, which i do and that also causes pain.
Then his attitude changed ALOT, he said he would refer me to another hospital as i had been let down by the rheumatologist at ours (the rheumatologist there put all my pain down to a virus....yes a virus!
He also commented on the rash i have on both cheeks and said he would test me for lupus as my rash in the sun also pointed to that as a possible cause, funny that because when i mentioned lupus several years ago i was told they had tested me for it, they lied!!!
He said i had to have another x-ray on my feet and also have to go back on high dose vit D as that keeps going down and he booked me in for 2 weeks to see him for the results.
He also spoke about nerve blockers for the pain but agreed that amytryptolene was not the best one, he did give me the names of 2 others but i have forgotten them, i think they began with a G or B? he told me to go away and think about it.
He said that he was going to try and help me but it is back to the beginning again, he said that autoimmune diseases are hard to find sometimes but that he also felt i had been let down and that was a shame.
So i guess i can look a little more on the positive....for the time being anyway, although still sceptical as his whole attitude was so different when he saw my deformed feet......sort of had the feeling that he thought i was just making it all up, of course when i showed him my 2 deformed feet he obviously thought oh dear she does have a problem, yes i do and yes i have been let down.
Do i hold out much hope of a diagnosis, the answer is still no but i am proud that i at least went to a Dr and had the courage to say HELP ME PLEASE.
Having x rays and blood tests in the morning, ridiculous thing to say i want something to be found just so i can move on but expect many of you have felt the same way at some point before your diagnosis.
Jane x
Oh wow Jane. Progress at last !! Well done. The G medication could be Gabapentin which targets nerves that are constantly causing pain. Don't think about it.... Try it. You're not back at the beginning at all, stay hopeful, you've made great strides today. I was almost jubilant when I was told I had RA, because at least it explained my symptoms, and like I've said before , once you know you accept and address. Go girl x
Just reading your post back. I think the doctor would have liked to treat you for a corn, quick prescription for cream. He can think again !! You merger, and I'm proud of you. Keep going. x
Great Jane. Good progress. I also think Gabapentin. I tried it but didn't work for me x
Matter.....
Hi yes that was the name, i am willing to give anything a try so long at the side effects don't outweigh the benefits, which we all know can and does happen, and yes i had to laugh as you are probably right about the corn, this time i am not willing to take the rubbish, i cant really anymore as im emotionally drained, like i said before the horrid Dr who stopped my pain relief did me a huge favour as it prompted the anger at them doing nothing....i now realise that too many people just accept what they are told and suffer, hopefully my diagnosis time will come and then i can accept.
Thankyou for your support, writing about my problem here and reading the replies really helped give me the push i needed to say i do matter and i know my body better than any Dr.
I will post up when i get to another stage, hopefully a forward stage.xxx
Thankyou Margaret, small steps, That is definitely the name and he did say another one too but i just didn't take it all in. I may try it i suppose i have nothing to lose so long as i said it doesn't cause extra issues. I think he wants to see the results of xrays and lupus and bloods before he makes a firm decision.
Thanks for your support, i have told my mum about this forum and told her it has been a great help to me.xx
Hi everyone thought i would post on here as just been back to the Dr for blood and x-ray reports.
Blood tests showed negative for lupus, no inflammation markers and x rays showed moderate change in both my feet since last x ray 4 years ago.
The Dr was great, he talked through things with me and said he really understood that i was feeling frustrated with things, he also admitted that blood tests do not always show things.
He discussed with me that he also thought that i could have MS, this is because my symptoms are leaning him that way, things like problems with my speech (cant always remember simple words) and need to urinate constantly alongside eyesight which has deteriorated over the last year with involuntary eye movements.
He said he didn't know who to refer me to neurologist or rheumatologist or both, i declined the Neurologist for now as after my collapse in July they seemed adamant that i had an epileptic fit and i felt like they would make my life worse so i asked for the referral to a rheumatologist with referral to neuro if rheumatology didn't help.
He agreed, he was really really great and admitted that it is hard sometimes to get a diagnosis as some specialists just focus on one aspect, he admitted that his knowledge was limited but he was determined to get to the bottom of this. He also said that at the end of the day drs had meetings to discuss patients, it looks like i was a topic of one of those discussions, that is why i think MS has come up.
My husband had the day off work today to take me and when i came out of drs i cried, just because i felt so relieved that he was listening to my issues, he said he believed me and that meant so much.
Having looked at symptom's of MS i agree that i show most of the signs but have chosen to go to rheumatologist first because of the pain in my bones, they can also check my nerves, i will discuss this with them when i get an appointment which looks like it will be a few months yet!
He also discussed pain relief and said that he would not be stopping my painkillers at the moment as he said that was the least of my worries, i had kept a diary of my pain and painkiller usage and after looking at it he said that 4 tablets a day were not adequate, i had told him 4 tablets had me in agony where as when i upped it to 6 my working day was more manageable.
I am still at the beginning of a long road but at least i have started on that road, my problems began almost 5 years ago i have struggled but now feel like i could get the help i need.
Interestingly he also put on my referral that i was not to see the consultant i saw before as he agreed that the consultant had not acted in my best interest, as an example he said if the consultant thought i had a nerve issue he should have done nerve tests, he admitted that he was a nice man but could come across a little different to a patient.....that spoke volumes to me.
Anyway after the dr visit i went to bed as exhausted and slept for 5 hours straight, its going to be a long road but i can maybe see that some day i will get a diagnosis.
Hi Jane I have total sympathy for you I also have only just been referred to a rheumatologist after 11 years of increasing agony! Our symptoms are very similar. I'm so happy that your finally being heard and I understand what u meant by your husband believing you. We may look okay on the outside but inside its living hell. I wish u the very best x
Hi Jane
I'm so pleased you have finally got yourself understood. I hope that the extra pain medication will help you through the next hopefully, few weeks, rather than months. Take care. x
Thanks i am still upset that nothing is showing up that screams out what i have! that makes life difficult especially when you have someone say well the x ray only shows moderate change in your feet, you have osteoarthritis in your feet, the x-ray doesn't show the pain I'm in, it doesn't show me not being able to walk properly by the end of the week, or the tears i shed on a daily basis.
Yes the pain meds help but they don't totally stop the pain, the pains i have gnawing away at my legs, hips and knees is still there as a constant reminder , the fatigue and the constant toilet trips, the itchy rashes and the depression just remind how much my life has changed in the last 5 years.
I actually told the dr i know my body better than anyone else and i know there is an issue i just need some help in finding out what that issue is, he agreed and said he was determined to get to the bottom of it, which is a huge step forward i suppose.
Interestingly enough i have felt rather down since the visit, mainly because i was hoping for a clue to what is wrong, a hope that i will get better, looking at MS symptoms is scary and i hope i don't have that but my mum reminded me of the numb dribbling feeling i get on one side of my mouth, the involuntary eye movements i have sometimes and i fear that by the time someone says we know what's wrong the damage will be done.
Having a referral is great, but i also fear that they will act like they did before and not take it seriously but hey ho what choice do i have!
Have a great Christmas everyone, as pain free as we can all hope.
I will post back on here if i ever get to the bottom of this.
Much love
Jane