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Discussion Starter · #1 ·
Hi all

I haven't posted here for a long time and since being diagnosed at St T's in 2005 (UCTD with overlapping SLE and SS features plus probable APS) and starting the drugs, for a little while seemed to have a more manageable life. Since a very grim last year though (my mother was very ill with ovarian cancer and I was having to travel to another part of the UK to nurse her for a few days pretty much every week for months, on top of health issues, two small children, 8 months' worth of major building work at home and, oh yes, a full-time career; then my Mum died in November) I have been feeling worse than at any time since diagnosis and treatment. I currently take 400mg plaquenil, 5-10mg prednisolone 1 week in 4 or higher does if flaring, diclofenac, aspirin and various other things.

My fatigue and aches, headaches, joint pains, mouth ulcers, GI issues and general inability to do much at all have been worse than for a long time. And then in the last 4-6 weeks a neurological issue I have had before has changed/got a lot worse. In the past I have had periods of feeling weird and weak on my lefthand side (face, leg, arm - face notably droops, foot sometimes drops), and in 2006 (?) St T's did a brain mri without contrast, which was clear. Have also more recently had very deep pain in left shoulder and left lower back/pelvis areas, which seems to go with the weird leftsided feelings. But recently this changed to comprise pretty constant and very severe, mostly leftsided, burning and gnawing deep nerve pain for a couple of weeks - worst at night, makes sleep impossible even after max doses of opiate painkillers, and lying on the sofa on impossible days even the feeling of pressure from the sofa on my left heel, back, shoulder, arm and leg was unbearable. Pain in trigeminal area of face, too. It was also agonising to try to raise my left little finger and to touch certain areas. Then in last week or so the continual pain has lessened but been taken over by lots of repeated and migratory, short-lived sensations of multiple very sharp needles sticking in areas of my body. These have been mainly on left hand side again, in areas ranging from toes and feet, through legs, perineum, recturm, flank, hand, arm, tongue, inside ear and face. Then in last few days I have had these sensations on the right hand side of my body too, though less so. I also say the wrong words a lot - though I have done that on and off for a long time.

I went to see my (good) GP last week and he referred me to a neurologist, whom I paid to see privately today. He was very nice and did a thorough examination. I told him most things though was feeling very out of it and forgot to tell him it was worst at night, about the ear and more intimate areas being involved, and made it sound like both sides now equally affected, which they are not. Neuro examination indicated some patchy sensory deficits but with no clear pattern. Muscles not objectively weak or assymetric. His conclusions were: (i) no neurological problem beyond things which would be part of my wider connective tissue disease picture (by which I assume he was indicating no suspicion of MS for example), (ii) no need to do a brain mri as I had a clear one before (though this was 3 years ago and without contrast), (iii) some kind of neuropathic process clearly going on though, probably inflammatory and possibly vasculitic, and he/we should wait to be led by St T's about what if anything to do about investigating it and treating it long-term (I have a St T's follow up in a month's time). Meanwhile he felt he should do something to try to calm down whatever is going on right now - and commented on how awful I looked; thanks doc! - and has recommended prednisolone for a few weeks, starting on 30mg but increasing after a few days to a week if necessary.

In many ways I felt reassured by the appointment - I am glad he thinks there is nothing extra/other going on beyond the CTD stuff, and I guess he is probably right not to do anything else before I go to St T's again - he talked about immunosuppression but said he thought he ought not to do that without their lead. I do think though perhaps it would have been useful to order another brain mri with contrast and not to assume it will be ok because it was 3 years ago. And more generally, I felt so low afterwards and still now - not because he was awful (he wasn't at all) but because I feel overcome by that feeling of how unfair all this is and how I want to get up in the morning and not have to ration my energy and have pain all the time. I know you will all know how I feel, and most of the time I am strong and positive - but today I feel overwhelmed and very teary about it all, more than I have for a long time. :sad:

I am so sorry for the long post. Thank you for listening. And thinking of you all too.

Sandra x
 

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((( Sandra ))) I really feel for you. Our appts can be so emotional sometimes, as we have to try to condense the last few months of our lives into a few minutes. I am glad you feel reassured by your appt, but understand your anxirty as nothing has really been resolved. I hope the appt at St Thomas can make things clearer for you and get some treatment sorted. Did he prescribe any painkillers such as amitriptyline or gabapentin as they can be very effective for nerve pain? A month is a long time to wait feeling so rough. I hope that the inc steroids help you.

Maybe you could start to make a list of questions to ask at St thomas, so that you get the best outcome.

Hope that you feel better soon.

Take care

Deb
 

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Hi Sandra,

I hope the Prednisolone helps take down the inflammation and lessens your pain. If you do not see improvement you should broach the subject of the MRI with your rheumy. You should also see about ways to keep the Lupus more in control other than with Prednisolone for the long term.

Take care,
Lazylegs
 

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Hi Sandra (((((((hugs))))))))) that's a lot to put up with without firm answers or treatment. However I'm glad he is trying the Pred and I hope it helps you to feel better in the next few days. If the Pred isn't enough to blat this then you have every right to request another MRI and this time with dye! I really don't understand why they muck around and don't use dye straight up unless a patient is highly allergic to it. However it does cost a bit more to do it that way and here at least they have to have an MD on hand when it's administered, so maybe some of it is about saving money :mad: It doesn't save money in the long run though if this is an ongoing problem.

You may indeed need Immunosuppression or at the very least something like Neurontin to deal with the nerve pain. More investigation needed to determine exactly what's going on before they make that call though. It's good you are seeing them at St Thoms soon. Make sure you take along a physical copy rundown of all these symptoms so you don't forget anything like you did today. I always rely on my list (rather than my shoddy memory) these days to give my specialists the best overview of things so they can take appropriate action.

Good luck at St. Thoms and do let us know how you get along :hugbetter:

love
Lily
 

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Hi Sandra,

I am a Sandra also..:). I read your post, and feel such sadness, for your
suffering. It sounds all too familiar.

I want to encourage you. Please know, that while this disease is chronic and incurable, it is manageable once the drs, know what they are up against, in
terms, of how extensive your nervous system is being effected.

An M.R.I. with contrast will help determine that to a greater degree, than what is already known.

I have extensive nerve pain through out my body, and once I started on Cellcept, and Neurontin, the stinging, shooting, sharp, prickly, kind of pain did subside.

Please know..that things will get better for you Marie. Once your on the right medications, you will be able to sleep better also.

Sending hope and good wishes your way,
:)
Sandy
 

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Oh Dear!

So sorry..I can say..that while I am better in general..my mind, is just not what I would like it to be..:lol:

Sorry, I called you Marie..Sandra.

:)
Sandy
 

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Discussion Starter · #7 ·
Thanks so much for your kind and helpful replies - and Sandy no problem about the name slip: I do it all the time, even with my own children sometimes! :)

No Deb he didn't prescribe anything for the nerve pain - he mentioned it then we got onto the steroids and it slipped I think. I forgot to remind him and I think he forgot to go back to it. I don't get on well with amytriptyline (gives me very bad dreams even at very low dose) but if I have much more of the nerve pain I had last week especially, I will be back to the GP to ask for gabapentin or something similar.

Do any of you have a diagnosis of mononeuritis multiplex? I wonder if that is my problem - i.e. I wonder if this is a peripheral rather than a central nervous thing? That would presumably mean any further brain mri would be clear, dye or not? But would a peripheral problem be extensive enough to affect one entire side of my body? And am I right in thinking that if the pred helps, this is not an APS issue but clearly an inflammatory one?

Hugs to all,
Sandra
 

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Hi Sandra,

I have been diagnosed with mononeuritis multiplex. Testing shows involvement throughout my entire body. It sounds like you haven't had an EMG. An EMG would confirm if you had mononeuritis multiplex or not. Your neuro would be the one to order an EMG to rule that possibility in or out.

I agree with Lily, I don't know why doctors don't order dye all the time. Without the dye small changes can definitely be missed. Since your past MRI was 3 years ago and you have had a significant change in your symptoms I don't understand why the MRI wasn't repeated as a precaution. It took quite awhile before white matter lesions showed on mine.

Take care,
Lazylegs
 

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Hi there..oh I can feel your frustration with this disease and all the dr appts..I have been going through the same thing and feel so depleted..I used to be so active,full of energy and now I cannot concentrate,have memory issues,rashes,fever,muscle weakness and trouble sleeping,hair falling out...I have to pace myself and cannot accomplish much..I hope you feel better and wanted you to know you are not alone....Hugs Diane
 

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Discussion Starter · #10 ·
peripheral versus central nervous system

Thanks Lazylegs and Diane. I feel for you Diane and I know there are so many of us out there feeling like that - (((((( hugs )))))). Thank you for taking the time to send thoughts to me. It certainly helps to feel you are not alone.

Lazylegs you are right - I haven't had an EMG. I did have an EEG a few years ago at the same time as my brain mri - but no more peripheral investigations. What symptoms do you have with your MM and what treatment have they given you?

I would be interested to hear from anyone else with thoughts on peripheral versus central nervous system things - though sorry in advance as I am away for a week so won't reply to thank you for a little while.

Sandra
 

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Sandra,
We all have times when it hits us harder and this is your time. I would believe that this has been going on for awhile but with your mom and everything else going on you did not pay much mind to it all. I know when my mom passed away that things seemed to be much worse body pain and fatigue wise. I would guess that it was because I did not have time for myself or to notice any of my pain. It sounds like you had a good visit with the doctor for the most part and that with the new appointment coming up that things will be handled in stages.

Let us know if there is anything we can do to help and I am sorry about your mom. You will get your positive personality back it will just take some time is all.
 

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Hi Sandra,

The main symptoms I have are tingling, numbness, muscle weakness, balance issues, dysarthria, tremors, and lack of coordination due to a brain/muscle/nerve communication problem.

The symptoms are lessened with Prednisone, an immunosuppressant, an antiviral and Rituxan.

Take care,
Lazylegs
 

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Sandra, I am so sorry you are battling all this. I don't have MM, but do take neurontin for migraines. I had a migraine which lasted for 4 1/2 months, so understand the feeling of futility in how to handle it all. Other health issues of long duration, but not what you are up against.

I hope your week away will give you some rest. Definitely you are ready for it!

I will second the suggestion of writing "love notes" for your rheumy. I know when my memory is in the cellar having everything down on paper helps both my doctors and I to make the most of the time we have for the appointment. I can do it when I am in a quiet mode and can focus on what I need to remember to go over with him/her. My doctors keep these as part of their chart notes so it makes things easier on us all.

Take care,
Sally
 
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