Is anyone paralyzed : I am Unable to maintain my... - PMRGCAuk

PMRGCAuk

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Is anyone paralyzed

Nones profile image
24 Replies

I am Unable to maintain my balance and have developed pain in one leg and basically Unable to walk. Is anyone else have this?

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Nones profile image
Nones
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24 Replies
PMRpro profile image
PMRproAmbassador

Do you have PMR/GCA? Some more details - like diagnosis and pred dose etc would be helpful.

Poor balance is common in PMR - and can be part of GCA as well. PMR pain is bilateral (both sides) so pain in one leg is unlikely to be PMR.

Nones profile image
Nones in reply to PMRpro

Diag. PMR. No Pred now. Dr took me off because blood tests were normal.

PMRpro profile image
PMRproAmbassador in reply to Nones

Up to 20% of patients have normal blood markers so that is nothing to go by.

However - what else has the doctor considered? Again, more details would be helpful. But one-sided leg problems are not really typical of PMR.

edmonton profile image
edmonton in reply to PMRpro

Hello, I have a problem which is sort of related to the one sided leg pain. I was diagnosed with pmr in March 17 after having symptoms since October 16. My pains started in my left thigh, then in right thigh, then hips and groin then finally arms and shoulders (so almost back to front). Well, started 20 mg pred in March and had done really well, almost feeling back to normal and was just coming down from 8 to 7.5 by slow method. However, my daughter had a baby 2 weeks ago which involved me doing loads more work in the home and kitchen (though very happy with new grand daughter) i think I overdid it as the pains have come back into my left thigh just the same as when it all started last October 16. It hurts to turn in bed and climb the stairs like before. So I'm so disappointed as I was so well before. I've gone back to taking 9 mg for the last 6 days but the pains are not too much better, so I'm wondering how many days will it take on the increased dose to get back to having no pain and am I taking enough or should I be taking more? It's just strange too, as you say, to have pain in one leg, but as I said, that's where it all started in October 2016, pain in one leg first for quite a few weeks. Sorry this is so long, I havnt posted much on here but read it every single day and have learnt so much from you all, so thank you ! Any advice or suggestions would be very welcome. As I said, it was like I didn't have pmr anymore as I was feeling so normal and well, so I'm not a happy bunny!!

PMRpro profile image
PMRproAmbassador in reply to edmonton

My suspicion when it is one-sided is that there is a bit of myofascial pain syndrome or piriformis syndrome involved and even trochanteric bursitis. The MPS especially as it is caused by the same inflammatory substances so it isn't unreasonable that it might appear before the rest of the PMR. I find when my MPS flares if I get in there and have something done straight away it doesn't get worse. If I leave it it will progress to more like a PMR flare and is harder to get under control.

I wonder if 3 or 4 days at a higher dose - 12mg perhaps - and then straight back to 9mg and start from there. Though not if baby duties are involved!! You can't give THOSE up! But even lifting a tiny baby can overdo dodgy backs.

edmonton profile image
edmonton in reply to PMRpro

Thank you so much for your very swift reply. It's interesting to hear about those other topics that it may be. I really think I over did it at my daughters, I stood up for far too long working in the kitchen and got up early several days to do the school run so I think I did too much and that's what I got at the end of it! A baby girl after 2 boys was well worth it though - but I'm home now and not on new born duty just resting. I will take your advice and go up to 12 in the hope it will clear the leg pain, I just don't want to be in the awful state i was in the beginning.

Thank you so much for your advice, it is very much appreciated and I feel a little less alarmed.

PMRpro profile image
PMRproAmbassador in reply to edmonton

No access to a therapeutic masseur I suppose? Sports massage specialists are very useful!

edmonton profile image
edmonton in reply to PMRpro

No access no - but could get my husband to try and massage to see if it helps at all, it's worth a try!

Nones profile image
Nones in reply to PMRpro

off pred now -- not taking any meds except vit D

others have also said pain in one leg prob not PMr

Zofitmogelijk profile image
Zofitmogelijk

Hi Nones, sorry have no idea what it can be. In Holland we have a sort of 24 hours gp service, my advise would be to call and tell them you possibly have pmr. ( 20% of pmr sufferers never have raised bloodmarks) and ask what to do.) Bad luck for boxing day.

When were you diagnosed? What dosage of pred were you on and for how long? Did it control your symptoms? It hard to help properly without this info. I have weak.legs and often have legs that don't want to accept messages from.my brain. I am on 10mg pred for PMR..in second year dx June 2016. Hope you feel better soon 🌻

Nones profile image
Nones in reply to

diagnosed 18 most ago. don't know how much pred i was given at first but it did remove most symptoms As tests improved, dr lowered dose to eventually none. Still very poor balance, pain in one leg, not much pain elsewhere

in reply to Nones

Probably a sciatic nerve issue. If laid on you back how far can you raise that leg in straight position. I also developed piriformis issue with PMR. This was in my "good" leg and stopped me in my tracks. Dr can do mechanical Obs and see how one sided it it. Hope you get relief. I have said to someone else on here that when my legs refuse to go forwards, the pain and sense of non-connection stops It, I took very short step or two backwards...carefully...and this unlocked my spasms.

If it starts to shift to both legs then could be PMR. I am also 18months in and still on 10mg having had flare at 8mg.

Good look and take it easy. 🌻

Hindags profile image
Hindags

In addition to all the other questions your question has raised, I wonder about whether it is the pain that makes the balance poor. Does your painful leg crumble and take you down?

When my sciatica was bad, some years ago, I lost balance more easily. It was always one sided. You could have PMR and sciatica. Without the pain now, and with QiGong, my balance is much better. It used to be if I felt myself off balance, I could not regain my balance and would fall.

Does a walker help you stabilize? Please take care that you minimize your risk of falling.

Nones profile image
Nones in reply to Hindags

am being sent to neurologist but wonder if orthopod would be better choice -- what do you think

PMRpro profile image
PMRproAmbassador in reply to Nones

Rheumatologist probably - orthopods are better at bones and what you describe isn't bones.

Oldman-1 profile image
Oldman-1

Nones, ask for a diagnosis by a Consultant Rheumatologist. Even then, consider that the first appraisal will not necessarily be correct. GP`s are just that, General Practitioners and no more. You have a legal right to a second opinion and just keep on asking until you get the answer you need.

Nones profile image
Nones in reply to Oldman-1

my dr is a board certified rheumatologist -- didn't have a gp then. Do now but they don't want to deal with the PMR part

peanuckle profile image
peanuckle

At the start of this journey I was paralyzed - unable to move my arms or legs. Didn't know what was wrong. Fortunately my doctor knew right away and put me on 30 mgs of pred. Took a couple of weeks before things started moving without excruciating pain. It has been 7 yrs now and I've had remissions and flares but nothing like the first time. It does get better. This site is great - you know you are not alone and we've all been there.

Nones profile image
Nones in reply to peanuckle

i agree that this is a great site--i've learned a lot reading here-- drs don't give you the personal experience you learn here -- i had no idea about the flares and remissions. Thought i was cured when dr took me off pred. Couldn't understand why I still could stand up or why I was still so stiff and sore--i don't have much pain but the stiffness never went away == it's mostly in calf muscles, neck and shoulder

in reply to Nones

There's part of your answer. Sounds like PMR still active. The inflammatory markers should show inflammation "clear" when on pred and you might be one of those whose markers never raise. You say you got relief on pred. Might well be starting point. At the moment I have weak thighs. Trying to get from sitting to standing takes significant effort and even then not sure I will hit standing mode!

Nones profile image
Nones in reply to

still have no balance -- waiting to see neurologist next month

rheumatologist says this is not pmr

in reply to Nones

I am glad they are at least taking steps to identify what's wrong. When I had herniated disc and paralysis in left leg it was a neurosurgeon who did the deed. Hope it's something as "simple". Good luck and keep us up to date. Others with dx if PMR but similar symptoms to you might be helped. Hoping a speedy resolution on your way 🌻

Oldman-1 profile image
Oldman-1

Nones friend, Where do you live ? if you are in the UK you have a legal right to ask for a second opinion. Certainly from a fellow sufferer`s point of view, I also have opposite limb problems and intermittent loss of balance. On the basis of the sheer number of sufferer`s, you have ever right to ask for a proper diagnosis and treatment. All my blood tests never showed Polymyagia. Two G.P.`s have concluded I have this disease and referred me to a Rheumatologist, who is now treating me but this will be a long trial treatment, In your position, I don`t see you should tolerate neglect of the order you have.

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