[getwellsoonerorlate]

Dear Friends,

I am desperately looking for advice and assistance. If you would take the time to read my story and add your thoughts I would greatly appreciate it.

I will start from the beginning and include some facts which may or may not be related to the RSD/CRPS.

33 year old Female, good health otherwise. Total body CRPS now 23 days. Onset of CRPS likely 79 days ago.

At this point I believe I do not have RSD/CRPS:

August 2011 - Try hair extensions with metal beads and wear them without pain or issue for 9 weeks.
September 2011- Have a flare up of an old back injury
November 11, 2011- Try hair extensions with glue (keratin). Applied in Athens Greece. They are applied incorrectly/do not match. Go to several salons to repair resulting in hair/scalp exposed to dye multiple times in one month (5-7) (when all my life I never dyed my hair) and removal of some extensions and some hair loss.
December 18, 2011 Removal of all extensions after 1 month results in loss of 50% of natural hair and bald areas.
January 15, 2012 Some burning sensations on temples over ears, light burning. Pain when hair is put up or moves in wind. Go to Stanford derm. They say may be neuropathy.
I try to get some extensions with beads installed on the back of my head where there is no pain but it hurts abnormally much. I attribute this to traction pain? They are removed.
February 2012 Begin a course of Prednisone at high doses for another reason 60-80mg for one month. Scalp sensations go away.
April 2012 sometimes when I wear clip in extensions pain sensation returns but not burning.

** Note: during these months I am using Minoxidil (Rogaine) daily perhaps too much and trying various hair treatments nearly daily to restore some normal texture to my destroyed hair. i.e. scalp very stimulated.

Likely Onset of CRPS 79 days ago

May 3 2012 Am talked into getting my hair dyed again by a top salon. When the dye is applied experience strong burning on scalp. However afterwards in salon feel OK.
Later when my head is tilted back on shampoo sink feel burning sensation on right side of nape of neck. Recall that there were no towels placed on sink to rest my head and sink was uncomfortable.
Return home and later that evening burning increases dramatically. By morning pain in all of scalp although burning localized to that area. Hurts again to put my hair up.
Ten Days Later - Pain increases (also alternates sometimes into itching phase) and I take prednisone again at high dose for 6 days. Stop prednisone for allergy test of dye (not allergic to main ingredient) and scalp biopsy.
Scalp biopsy preformed by Dr. Richard Strick Los Angeles. Very painful experience. Went to ER in pain. Felt strange copycat pain slightly on other side of head.
A few weeks later- develop numbness on top of scalp that does not change or fade. Also into top of forehead.
June 2012 - Foolishly apply Minoxidil (Rogaine) and steroid to burning part of scalp - pulse goes there intensely for 4 hours and pain sharpens to become a pressure point I can localize with a finger press. Very intense.

Onset of Total Body CRPS 23 days ago

A few days later I am walking with my father and feel pain in my legs to the touch and weakness.
Then at night I experience numbness and tingling rising from my feet and hands upward and facial numbness.
Then seems better but when I walk one day pain gets worse the more I walk (in my legs).
Then sensations of pain in old injuries and joints.
Then heat sensations - electrical heat sensations in different areas of body and fingertips on left hand.
Then sensations of wet and burning.
Then sensations like a bug is crawling on me.
Then temperature not the same in one limb and the other- absorbs heat differently.
Then purple feet when placed on ground.
Then Take Cymbalta and Lyrica.
Then I accidentally hurt right leg slightly and pain travels up leg to right side of body and then over to left side. Copy cat pain developing in left leg.
Pain subsides, and then resurges on various days.
Try Ganglion Block on right side- don't feel much change except soreness at injection site and spreading area.
Night before last - feelings of numbness and paralysis and twitching muscles.


-----
Meanwhile pain at nape of neck fades and returns, always present. Cervical MRI normal. Brain MRI some white spots from migraines probably.


I am torn: I am scheduled for a ganglion block of left side Monday but I'm wondering if this is pointless with full body RSD. I had right side and didn't feel much change. I have appointment with Joshua Prager, MD in LA Wednesday and am scheduled to speak with Moskowitz Michael, MD again (he spoke with me before and seemed confident in blocks) Tuesday. I am tempted to just drive down to LA to see Prager asap. They had offered me Monday but I changed to Wednesday in order to do injection as normal and keep other appointments--- although they said Prager could do the injection if he deemed it needed.


Was this caused by too much stimulus on my scalp?
Or a pinched nerve at the nape of my neck (what I think).


Please help. I don't care what doctor where I just need to see people soon and for this issue money is not a problem.

[AintSoBad]

I wish I could help, but I'm on the east coast, and don't know any Dr's out your way.
Go to rsdsa.org they have a doctor finder.

I'm going on 30 years now, and have recently been assaulted. I've lost every (mostly) and my friends are all ill.
This disorder will do that.

I suggest you find out if you have TOS (Thoracic Outlet Syndrome) there is another page here for that.

All I can do is offer up some prayers and wishes for your reversal of this beast. Act aggressively with doctors, get appointments quickly and get to them!

Pete

asb

[getwellsoonerorlate]

Thanks for the response. I am deeply sorry for all that you have suffered.

Originally Posted by AintSoBad

I wish I could help, but I'm on the east coast, and don't know any Dr's out your way.
Go to rsdsa.org they have a doctor finder.

I'm going on 30 years now, and have recently been assaulted. I've lost every (mostly) and my friends are all ill.
This disorder will do that.

I suggest you find out if you have TOS (Thoracic Outlet Syndrome) there is another page here for that.

All I can do is offer up some prayers and wishes for your reversal of this beast. Act aggressively with doctors, get appointments quickly and get to them!

Pete

asb

[Jimking]

I do know someone who is severally allergic to hair dye. This person experienced severe scalp pain, swelling, eyes even swell, sores on scalp, hair falls out. This person dyed their hair twice and got the same reaction and she looked really bad. Whether this caused RSD or not in your situation I'm not sure but could be that you are still poisoned from the dye. I would do nothing but let nature bring your scalp back to normal. It could be the more you tamper with it the worse it gets, perhaps. As for RSD there are many instances where the root cause is unknown. Lets hope you've got a very bad chemical reaction instead.

[getwellsoonerorlate]

Thanks for reading my post. However CRPS has been diagnosed by Dr. Michael Moskowitz.

I think I have an entrapped nerve on my neck from bending my head back at the shampoo bowl. The burning of the dye had nothing to do with it, perhaps. A cervical MRI cannot show the octipital nerve. I wish it was just an allergic reaction but I never really had any redness and I never had any swelling.

Originally Posted by getwellsoonerorlate

.

I think I have an entrapped nerve on my neck from bending my head back at the shampoo bowl. .

Trapped nerves can give off very similar symptoms to RSD, so can DVTs. You need to find out for certain if there isd a trapped nerve as soon as possible.

[catra121]

I am very sorry to hear everything that you are going through. I'm sorry that I cannot be much help with doctors...but the suggestion of checking rsdsa.org is a good one.

As for the cause...this can often be hard to pinpoint. There are many people who never end up figuring out the cause. Other times it is something as stupid as stubbing one's toe or bumping into something. Other causes are easy to pinpoint, when RSD follows a worse injury or surgery or something like that. I try not to think too much about the cause of my RSD. I KNOW what caused it and could spend my life blaming those responsible...but it won't make me any happier or my RSD any better.

If you do have another underlying issue, however, I hope they are able to deal with that as soon as possible. If you have a trapped nerve in your neck then that could be causing many of the symtpoms. But if the doctors highly suspect RSD then you should be cautious with any surgeries or invasive procedures and make sure to weigh the risks with the possible benefits carefully. Don't let anyone push you into something you aren't comfortable with because you are deserate or feel like you have no other choice.

I hope Dr. Prager is able to help you. If not...I hope you find the right doctor soon. Good news is that you are still fairly early into this and therefore have a decent shot at remission if they can get you proper treatment soon. Take care.

[getwellsoonerorlate]

Could my occipital nerve be trapped in any place other than at the spine? Because I had a cervical MRI and it showed that it was not trapped at the spine... there was no finding. So either my occipital nerve is just somehow angry because of all the things I have been doing to my scalp and this is CRPS absolutely or it is trapped by some other means that a normal MRI cannot detect. I wonder if I should get a neurography but no doctor is suggesting it. They just offer up all these blocks...and that's not really solving anything now is it.

[CRPStweet]

Originally Posted by getwellsoonerorlate

Could my occipital nerve be trapped in any place other than at the spine? Because I had a cervical MRI and it showed that it was not trapped at the spine... there was no finding. So either my occipital nerve is just somehow angry because of all the things I have been doing to my scalp and this is CRPS absolutely or it is trapped by some other means that a normal MRI cannot detect. I wonder if I should get a neurography but no doctor is suggesting it. They just offer up all these blocks...and that's not really solving anything now is it.

Did you see Dr Prager yet?
Was he able to help you?