Hi , my dad has wg and is having terrible walking problems has anyone else had this ?

[lolly47]

[hamble99b Volunteer]

Hi lolly, sorry to hear that. is it through pain, muscle weakness, fatigue?

it can be any or all of them.

sandra.

[lolly47 in reply to hamble99b]

Bless him its been coming for just over a year , when it first started was just slight termorin his arm, then his legs would feel very heavy like lead boots then he started getting un steady with couple of falls , he was admitted last november with chest infection and blood poisioning, as this all happened he couldnt walk at all, since then he now walks with a walker and needs 24 care from mum, all scans are clear of Parkinson Disease,so no idea what this is ? he is seeing a new neurologist in May but seems so far off !!!!!!!!!

[hamble99b Volunteer in reply to lolly47]

I get the heavy lead legs, poor balance and shakes too.

who diagnosed the wg?

if it is wg, he needs to be on the proper med's as soon as possible,

[I'm on prednisolone and methotrexate]

my wg consultant is also a rheumatologist,

your Dad needs to see someone before May.

Can I suggest you email the people who run this site, John & Susan -

[e-mail]

and ask about consultants in your area.

keep in touch,

regards,

sandra.

[lolly47 in reply to hamble99b]

Hi Sandra, he was diagnosed by a rheumatologist at Barnet General Hospital back in 2004, then he was referred to Royal Free London where is under Dr Burns and eye doc Dr Kidd . He has been in remission now since last summer, he was very lucky when he was admitted in November he was put on a renal ward to which Dr Burns was the ward doc , but since coming out in December he has no appointment for wg booked , did speak to Dad only on Thursday and need to chase this up. Many thanks and i will email John

[Ayla Volunteer]

Is your dad on prednisolone, Lolly? Pred causes muscle weakness and, so I am told, a loss of around 20% of the muscle itself. Is his balance ok? Could pred be the cause?

If he has pain, though, it won't be simply muscle loss or muscle weakness. Would recommend that he mentions his walking difficulties to his consultant next time he sees him.

Ayla

[miss-scarlett]

Hi Lolly, I too had dfficulty walking as the pain in my feet was bad and my ankles were swollen, some days I could not stand or even have the energy to be able to get out of a chair without help, I was constantly tired, and my legs felt really weak - which was due to muscle loss. However, once I was diagnosed and started on prednisolone, the ankle swelling went down and and the pain improved, i do still have pain but at least it is better than what it was and I can walk better too. So yes, your dad needs to tell his doctor about it and any other symptoms he has no matter how trivial they seem.

I have been diagnosed WG in January.

best wishes

Anita

[lolly47 in reply to miss-scarlett]

Glad to hear you feeling better , he is not on any pred now just septirn every other day which i beleive is a anti botic , he is on a trail drug for Parkinson but all scans show nothing and i feel the drug is doing more harm than good , seeing new neuro doc come May so really hoping he can help in a very difficult sitution .Take care Lolly

[zmajevi]

Hi Lolly,

my dad was diagnosed with WG last July. He has had various walking trouble too. At first it was because of pain in the legs from WG itself. Then it was prednisolone that made him weaker. Last month he had a flare and had lost his stability due to a granulom in his back-head. I am not telling you he may have any of these, but since you are also new with WG any help may be precious. He must inform his doctor of any small changes (even in mood), as said previously by others, in order to help him understand how he is responding to the given therapy. I am a dentist and my brother is a doctor (specializing in radiology) and we are all very new with everything about WG (I didn't even know such thing existed before my dad got ill). Thank God, the doctors around us are well informed of all new drugs and methods. But, believe it or not, the one who knows better is my dad himself and in fact the person with WG is the only true guidance (apart from tests) and a great help to the doctors treating them. I hope I was of some help if any and that your dad gets better soon enough.

PS : Remember also that summer is the best season for all such illnesses. Be well

[lolly47 in reply to zmajevi]

Thanks for that its a really odd thing , its like he has Parkinson's but all scans show nothing at all , mri ,ct and pect scan nothing but can not walk un aided , you said about this granulom where was it again ?

[zmajevi in reply to lolly47]

Hi once more. My dad has various granuloms at this last flare (in fact we are still trying to get him in remission). One of them is near his cerebellum and presses the center of coordination (his is feeling numb in hands, fell down a couple of times, had stability and walking trouble). Since the doctors changed his medication (they put him on Rituximab, apart from prednisolone, cyclophosphamide, antibiotic etc) he is doing much better. He had a granulom in his eye pocket too, which made his eye pop out and that got better too. Also his sinusitis and headaches (again granuloms in sinuses and on brain) suppressed. I am not suggesting your dad is having a flare, but I strongly recommend he sees his reumatologist first, since there is much time till May. Hope you are all better

[lolly47 in reply to zmajevi]

It's really hard to see someone close go through so much , i will call and try and get an earlier appointment for Dad and hope it gets sorted . Keep strong and hope it settles soon . Lolly