I am not sure if i'm in the right place or not.
I need some info for my dad.
He is soon to be 72 yrs old.
So i will just give the details and hopefully someone
can help me out!

He tells me he has a burning on his thighs.Like a really bad sunburn!
Only from the top of his knees to the top of his legs.

He doesn't have any problems from the knee down to the tops of the ankle though.
He cant stand for the bedsheets or his jeans to touch his thighs!

Also he had these same symptoms in his feet for about a yr prior.

2 of his toes on the one foot are bluish,hot to the touch and shiny!!

He doesn't have any problems from the knee down to the tops of the ankle though.
He has told me that he feels the pins and needles in his feet alot.

Also this is the weird thing.He said his feet hurt worse when he sits down
and puts them up while in his recliner.

He has been to see one neurologist so far.
I was quite upset.He told him there was nothing he could for him!!

Then i told him about what i knew of neuropathy and the meds they could give to help him...
So he asked his primary doc and then he prescribed neurontin.
My dad has heart trouble and has macular degeneration.So we have to be careful with what he takes.
Anyway,he has now gone off the neurontin due to side affects.

I have him talked into going to the cleveland clinic in the spring!

In the meantime i am doing some research to try and help move things along.
I am not sure if he had an injury before this all started or not.
I just thought i would send out this post and ask if it sounds like he could possibly have RSD?

Hey Kell,

Sounds like your dad does have RSD (JMO) - He has some of the classic symptoms. I would get him into see another Dr as soon as possible for a 2nd, 3rd, 4th opinion until they can diagnose the problem.

Neurontin is a very scary drug for me as my husband in his first round with RSD suffered horrible side effects. I wouldnt recommend it to anyone just because of personal experience. With this round of RSD he is on Lyrica - (It is made by Pffizer as well and is basically another form of Neurontin) Might be something for your dad to try. He also needs physical therapy asap - some people have found that it can stop or prevent spreading and definately helps prevent muscle atrophy. I cant stress how important an early diagnosis of RSD is in regards to "recovery".

This is a great place for you to be - There is lots of information here and a bunch of helpful supportive people. Best of luck to you and hope your dad gets the help he needs.

Hi Kellie,

Well, it sounds very similar to RSD, but there are many things which have similar symptoms.

The current thinking is that RSD results from damage to the subcutaneous sensory nerves - micro small.

Couple of things...the most common causes are injury, surgery and needle injection; has your Dad had any blood drawn in the affected areas? And has he had any injury there years ago? - Sometimes an old injury can be the cause, it doesn't have to be recent.

You set me wondering about the "gap" in the areas affected - both legs and feet are affected, but not between the ankle and the knee. Usually RSD begins in an arm or foot and spreads contiguously, it doesn't usually "jump" within the limb like that...I could be wrong there, though.

Did it start in one foot or leg before spreading? If not, and he has the problem in both legs simultaneously, that would seem to argue a problem somewhere in the spinal column.

In the small-fibre peripheral neuropathy area, "pinched nerves" is the one that is most easily confused with RSD. Also, there are several diseases that can mimic/be similar to RSD symptoms, e.g. arachnoiditis, MS, some forms of diabetes, TOS, discogenic disease, deep vein thrombosis, cellulitis, vascular insufficiency, lymphedema, erythromelalgia, Cauda Equina Syndrome...to name a few....
I'm surprised, given the symptoms, the doc didn't do some tests; but maybe he knows your Dad's history well enough.

HwRSD, you said:
Really? I have never heard that before, could you tell me where you found that info, please?

So....dunno Kellie, you'll have to do the rounds of doctors; remember that if it isn't RSD, if it's nerve compression for example, they can actually try to fix it mechanically, unlike RSD...so let's hope it's not RSD.

Let us know what happens,

all the best

Sorry to hijack the threat - but I agree with Artist -->

a) Kelly = what about sending your dad to a rheumatologist? they are sometimes very useful and would be able to assess for some others things that cause the RSDy symptoms - or maybe a pain management dr would also help?

b) HwRSD - I have had thousands (not quite) hours of physio - when I was first diagnosed with it in right arm I had inpatient physio/ OT/ hydro for months and then as the RSD spread I continued with inpatient physio/ OT/ hydro etc etc etc...... This has not stopped the spread of my RSD and in some cases we wonder if it has worsened the spread - I do believe that physio is an important part of management/ recovery but at the same time I don't believe it stops the spreading - so refs for that would be very interesting!

Thanks

and Kelly - I really hope that things improve for your dad. It is always possible that he has 2 different conditions - like RSD/ nerve entrapment or something affecting his thighs and then neuropathy in his feet - but I could be totally wrong - I am not a dr. Could be worth looking at the two conditions seperately though? As artist said RSD rarely seems to jump from foot to thigh without knee/ calf involvement .

Take Care all!!

Rxxxxxxx

Hey there - First I can say for my husband that the combination of blocks and pt definately prevented it spreading from his leg when he had the injury back in 1995. I also have another friend who through pt prevented it from spreading past her ankle and actually stopped the RSD where it sat. (She is pain free and as a matter of a fact was "rocking out" at a concert with me last week!) These are just personal experiences AND were combined with early diagnosis. (Within a few months) as a matter of a fact my friend with the ankle is fully recovered - I just found this out last week. All she had was pain meds and physical therapy. I'm guessing she is a rare find and was lucky I suppose one could say, but she is hope for the rest of us.

Hubbies therapists & Dr's preach PT up and down and left and right, I have read this information also - but right off hand I have a gizzillion links and pages I have read through but will be more then happy to share the information when I find it in this pile of links! LOL

Wishing everyone pain free days...

Hi again
So sorry it took me a bit to get back to answer.
I know the neuro ran some tests on him for b12 deficiency for ANA and diabetes.They all came back ok.The standard test!

He also had an MRI of his spine.So i need to remind him to get the transcripts from that,before he goes to the clinic.

He had gone to see a foot specialist to start.Last Jan,i think.
So for 4 months against my wishes....
He let this doctor bill the insurance company for surgery{we found out later}.While he did nothing more than send him for an MRI on his feet.
Then inject him with alcohol shots!For 4 months this went on!!!

I told my dad he should have the nerve test done on his feet.
This doc actually told him.There was no sense in going through"such agony"unless the alcohol shots {he insisted on giving him} didn't work after however long.I was LIVID!!!
Thats when i finally convinced him to stop seeing that jerk and call a neurologist!

It really surprised me that the neuro didn't have him go for the test either!!
I dunno if it's because he is older or what.But he was told he basically had to learn to live with it!!

My dad had just given up once he had a bad reaction with the neurontin...
So i keep talking to him and thankfully now,he is agreeing to make an appt at the Cleve clinic.
I plan on copying this info and sending it to him.
I just cant stand the thoughts of him"learning to live"with this!!
There has got to be something to help him out there...

Quote:from frogga
[ I really hope that things improve for your dad. It is always possible that he has 2 different conditions - like RSD/ nerve entrapment or something affecting his thighs and then neuropathy in his feet - but I could be totally wrong - I am not a dr. Could be worth looking at the two conditions seperately though? As artist said RSD rarely seems to jump from foot to thigh without knee/ calf involvement .]
Thats a very good idea.
I will make sure to take notes from this post.
Thank you all for your well wishes for my dad and for all the information!
I greatly appreciate it

Take care~