I'm new at this and a little confused
 

I was in a car wreck in Dec 2009. I thought I was on the mend when 20 days after the accident I had my first "spell" I didn't know what it was. I've never experienced it before. I started to feel real funny, disconnected, disoriented, then these weird sensations were coming from the pit of my stomach and radiated out through my legs. My body got real weak and I couldn't hold my wait anymore. I squatted and closed my eyes. My co-workers tried to talk to me. I heard them but I wasn't able to respond. My throat was constricted. I couldn't move from the spot I was at until whatever it was I was going through went away. All I could do was let the tears run down my face. I was terrified. When this thing finally past I was exhausted and still disoriented. Next thing I know all the pain from the car wreck came back. Then my back started to burn (like someone had a blowtorch to my back). I am numb in spots on my back.

a few days later, I had another spell, and that time the left side of my body went weak. I didn't regain all my strength. I am 6 months into this thing that is going on and I still don't have very much strength in the left side of my body. My left hand/arm turns blue/purple as do both my feet. They are extremely cold. I notice that I have these "spells" more frequently in the cold than the warm.

I went yesterday to a Neurosurgeon who basically told me "You don't need surgery on your spine [I have herniated disc tourching the nerve sacs in the neck and 2 places in the mid and lower back]." I asked him about these "spells" that I am now having every other day, and he simply told me that wasn't his field of expertise. I then showed him the blue hand and feet, and he simply said "That is Reflexive Sypathetic Dystrophy Syndrome." I guess I was supposed to already know that. Okey dokey.....

That brings me here to you all. I have spent 6 months trying to get a diagnosis and to no avail. The neurosurgeon I saw yesterday said RSD wasn't his area of expertise either and wouldn't diagnose me with it. I am at my wit's end and from what I see, if something doesn't get done soon enough, then I will not have the possibility of this thing going into remission. I am not in a lot of pain. My left arm and leg tingles and aches. My back hurts every now and again, but what is bothering me most are these "spells". They seem to be near faints. Some have said seizures. I have an appointment with the UofK Research Center at the end of July (2 months from now) with the Neurological and Muscular portion of the center.

I would like to find someone that has some type of expertise in or close to the Louisville, Kentucky area, that I can get in to see before the end of July.

Any help? Words of wisdom...

BTW certain noises/pitches are really irritating to me lately. Movies that are extremely busy make me dizzy. These are new to me, is this part of it?

Thanks!

GP,
It certainly seems that you have RSD, but maybe that's not all.
You need too see the best Neurologist that you can! ASAP!
Call and see if they might fit you in with a cancellation....

You're on the right path.
This is a very supportive group, and you'll get to know lots of great folks.
I'm not familiar with the area you ask about.

Go here:

www.rsdsa.org

bookmark it.
It's another site that's full of information. If you can join, you'll get newsletters, but you can search for doctors by area there, and give them you email addy, and they'll send you news. Jim Broatch, the director, is a great person too.

All in all, you're lucky that you survived.
But, now you have probably/maybe a permanent monkey on your back.

This "syndrome" needs to be well managed, by you, your doctor, probably a psych for a while, and good excercise! NEVER STOP MOVING!
Right through the pain!

I've had this bastird of fun, since '83. I know a little......

Be Well, and, stay in touch!

Pete
asb

Thanks Pete! I appreciate the words of wisdom. Sounds like you have had a long bout of this thing. Unfortunately, not many Neurologists will see you once you've seen another Neurologist.

Since I have seen a Neurologist in the January/February months (who is clueless and doesn't think RSD is the answer) no one will see me. I don't think that is right. The Neurologist that doesn't have a clue is the one sending me to the University of Kentucky at the end of July.

But I can keep trying. Maybe someone in one of the other states or closer areas will be able to help me a little bit sooner. I will check the website.

Thanks Pete. This information will be helpful! I will go to the website to check it out. I have tried going to a different Neurologist, and most won't take you if you have seen a Neurologist. The Neurologist that I have seen is pretty much clueless. He is the one sending me to The University of Kentucky Research Center. So I can check the surrounding areas to find someone else that may take me.

Hello GP {we usually shorten names around here LOL},

Nice to meet you, and I hope we can be of help.

What was your original injury from the car accident, and what parts of your body were injured?

You've been to both neurosurgeons & neurologists?
Any physiatrists? {rehab docs}

The spells are something I don't recall seeing mention of on the RSD forums... so that might be something else...:(

Hopefully as others see your post maybe they will have thoughts on that part of it.

Have you considered looking into expert chiropractors for some of your symptoms? Possibly might be of help for the back problems and maybe the spells also.

Hello GP...

You have my attention... mostly because I want to say how sorry I am for what you are having to endure..I have RSD...yup, I am one of them...I have had it for 3 yrs. now beginning with a knee surgery now full body and some internal involvement..Now not to scare you but you must keep reading..educate yourself and now move forward to either a neuro or a pain specialist or an anethsiaologist....someone who is versed in RSD..Not easy to do but don't stop..kiss butts to get there even if they don't want another Dr.'s seconds..who cares..go! See you have some options left for pain control..blocks, meds, on and on..but time is of the essence...RSD is a 4 headed animal, my own pet name for it..but we are here to help you manage and ask away..as we have all felt the pain, despiration and hopelessness..we know how to sweep up behind you to let you know there is life during RSD...we care here...we are family and we want to help..you have come to the right place..Welcome..now do your homework and don't stop...

Gentle hugz..help is on its way!!

Kathy:grouphug:

Hi GP, kathy is right on with all of her good advise. You might try looking for a pain management practice to help you and to give you some answers. I really did not have a concrete diagnosis until I was sent to pain management by my surgeon. Even the, I had to find another pain doc to get good treatment. It is really okay to doc shop, you are going to be in a relationship with this person for a very long time. I am so sorry that you are having to deal with this monster, but am very glad that you have found this great bunch of people to help you travel through this journey. God Bless, Lisa

Hi Going Places, I am so very sorry for your accident and symptoms you are now having. I have had RSD following surgery 15 years ago. Many of your symptoms I have had. It is terrifying.
This is a wonderful group of friends that are compassionate and informative. Please know we care about you and will help in any way we can.
You are right, your hope is for remission-there is no cure. I got into physical therapy right away and after a year of therapy and massage , I did go into remission. (had frozen shoulder) They did tell me it may go into other shoulder and after a year or so of remission, it did go into the other shoulder. More therapy and massage. Another remission of a year or more. While water skiing, pulled nerve in original side. Wasn't diagnosed correctly for 4 years, hand is like a claw 50% use. Why keep moving is imperative. Moved to other side. In the beginning, I did have shooting pains thru back, electric shocks, throat choking,After the water skiing hand issue, was misdiagnosed-flew a few states away to see sports injury orthopedic hand specialist. In 1 minute, he knew it was RSD. Comfirmed with nuclear med tests. Now have full body RSD and internal invovement. The Pelvic area feels like there is a fire inside and also stomach area. 6 years ago diagnosed full body and suggested seeing a psychiatrist. I found one that also is a neurologist, and pharmacologist. Being on the right meds and amounts is extremely important. Getting restorative sleep is critical to deal with this painful disorder. RSDSA says the McGill Pain Index lists RSD on a scale of 1-50 as 42 -that's above amputation.
RSD is an autonomic disorder -meaning it involves involuntary organs, like blood pressure, circulation, lungs, heart, immune system. The sympathetic nervous system causes high blood pressure, the para sympathetic nervous system causes low blood pressure. I woke up one morning and had low blood pressure, I passed out, lost control of bladder, colon, was out for over an hour and half. When I woke up, couldn't get up. crawled to knock on door and get my husband attention. Paramedics said i was dead-passed out again. Was in semi-icu for 6 days. This incident was caused by sudden loss of blood pressure. I now take my pressure nearly everyday and journal it. I usually have high blood pressure from the RSD and take 2 double dosed blood pressure meds. Had been on triple dosed of one and double the other.
My neuro, said it is likely to happen again. One of my friends has had 3 episodes.
I used to have involuntary seizures, electric jolts, jerks, limbs uncontrollable flying up many times day and night. Was on 3200 mg of neurotin. Then changed to Lyrica. Now off of both and it's rare to have a jolt. They would go thru my brain and very scary.
Because this is a very expensive disorder, and no cure, I would recommend you have a very good attorney for the accident. Treatment and meds are expensive and long term. Many of us are unable to work. The pain meds, don't allow us to drive, but a very small window. Remember there is usually a 2 yr. statue of limitation of filing any legal suit.
RSD affects the Limbic System of Brain, is why when we are talking, we grasp for words, have short term memory loss, and speaking and forget works or even what we were saying.
There are some prominent Drs. that treat RSD-try to get the best you can. The Tens Unit Helped my hand. Surgery is very much discouraged by most Drs. Many Drs. say it doesn't spread, but it does and especialy with any surgical procedure. There is a good website rsdrx.com puzzles list. Dr. Hooshmand practiced medicine in Florida for 40 years-retired now, but has a lot of information on RSD. the puzzles are questions with his answers.
Be cautious with dentist-I take antibiotic day of procedures and gas mask.
A blood draw can cause RSD-
My next plan is HBOT. My Dr. built two clinics with one in each.
Many of us have skin issues. I'm working with my gyn and a comounding pharmacy.
Again, I am very very sorry-please know we care. A support group can be very helpful. RSDSA has a place where you can put your zip code and it will give you closest support group and phone number of leader. From there, you can get a lot of local information from fellow RSDers.
Take care, and let us know how you are. One of your new friends, loretta

Hi Goingplaces
I'm glad you found this sight to ask questions and to feel understood.
I noticed in your post you still haven't been referred to a Pain Management specialist who is also an anasthesiologist. A pain management doc is more likely to have experience with RSD/CRPS.
I can only imagine the amount of pain you feel having a disc touching the nerves sacs in your neck, mid and lower back. This contact can possibly be causing reactions from any and many body functions that could be causing the 'spells.'
First and foremost, Ihope you are referred to a competent and experienced doc who is willing to work with you and not refer you to yet someone else.
Good luck with your appt. at the U of K Research Center. I am hoping they have a Pain Management Center as well!
Sending hugs to you,
Hope4thebest :hug:

Hi I agree with others about seeing a pain doctor. I have also seen a couple of neuro's and both seemed ok that I got another opinion so I would still look for another one. Do you have any teaching hospitals near you? I would call both the neurology dept and pain clinic and explain a little of what you are looking for. For your current apt in July I would call everyday to see if they get a cancelation. I have done that before and got into docs months earlier. I hope you get some direction and relief.

Hi Dawn It is carol. I am so glad that we talked and am still in awe that someone else has experienced the "spells" that you described as I told you I also experienced these.
I have read all of the above posts by the wonderful people here at neurotalk and as you can see they have validated a lot of things that we discussed yesterday. Remember to keep me (and all of us here) posted,as it is the only way to help others. I am here for you. fondly-Carol

Thanks
 

Hey guys thanks for your words of wisdom. I am still trying to work full-time in all of this mess. I have been able to deal with the pain levels at present. The main issue for me are the near-faints (spells/episodes are what I like to call them). I have been seeing an Occupational Kinetics Office. They have me on Massage Therapy and Physical Therapy for now.

I am happy (unbelievable that I would be happy to see any doctor :o) that I was able to get in to an RSD specialist here in Louisville. I go to see him on 6/18/2010. Hopefully, he can shed some light as to what is happening with me.

Last night, however, I had another new :eek: experience. My husband and I were going to bed and when he turned off the lights, I felt a sharp pain go from my neck down my back almost like electricity. The left side of my body went weak again. I became overly emotional. My husband freaked out. He immediately turned the lights back on.

It had been 1 week since my last episode so I was feeling pretty good. I cannot understand how turning the lights out did anything to me. I don't usually have symptoms other than neck and back pain when I go to bed. My episodes usually happen when I am at work. Has anyone had this experience? I didn't faint, or black out or loose movement. Just went weak and emotional. The weakness has continued into today. My left cheek is still semi-tingly/numb.

Hi GP, and welcome!

Sorry to meet you under these circumstances, but you have found a wonderful and supportive home with us. You will find that every single person on this forum understands completely what you are going through. I have made so many wonderful friends here and have no fear of asking the "stupid" questions. The only stupid question is one that we don't ask. You are encouraged to share your true feelings, your fears, your frustrations and any other thing you want to share. No judgement, EVER. It amazes me just how loving and compassionate everyone is. I only wish my "real" friends were as supportive as my friends here!

I've had this beast for almost two years now. I was squatting down at work and my boss didn't see me and crashed into my left hip with a steel kitchen cart. My rsd is lower back and left leg. I am unable to work (well, my doctors say that but w/c just dropped me and said that I CAN work, but cannot walk, sit, stand, use my arms/legs. They also say that even though I am taking high doses of morphine and medicinal marijuana (sp?), cannot drive, spend days in bed at times and have epidurals that paralyze my legs for days, I am able to find a new job (after I fail the drug test) and support myself. OOOOOkkkkaaaayyy!

Anyway, please don't feel alone. We have all been terrified when reality sets in. We will hold your hand and pull you through the fire when you need it. Keep us posted...

Another new friend,

Kim

BTW everyone, its still me, kim. I had to change my screen name.

question???
 

Everyone keeps saying that I need a pain doctor. At this point my pain is managable with physical therapy, massage therapy & I am receiving chiropractic care as well.

I guess I am confused :confused: as to why I need medication for something that is managable without meds.

Dawn

Count your blessings. My wife who has RSD went 4 years without meds. She's had this condition 8 years. Hopefully your condition will stay as is or decrease, for many that is not the case.

GP.. hello..Keep Smilin... back here with you.... and can you believe.. I am still smilin?? Who ever in their right mind would have made up such a screen name??? GUILTY!! (and a little insane)...

Anyway..I want to shed some light on the subject of finding a Pain management Dr. just as Jim was eluding to..it is wonderful that you can tolerate Pt and such at this time...Continue doing the "hands" treatment on as long as you find relief at this time but the thought of having a PM or anethisologists still stands as one day you may need some more intense guidance and possibly meds, just as Jim's wife, 4 years no meds..4 years need meds..... Myself, I am not taking anything but not by choice, I have a ultimately sensitive tummy...so I chew on many bullets in a days time.. so use this time to hunt and pick for a good RSD knowledgeable Dr.... and as long as you can still get by on alternative care and when/if the day comes you need a new set of eyes..you'll have done your homework..not easy to find an RSD knowledgeable, then likeable Dr.... Take this time and let us know how you are doing!! We are family and a family who cares..a bunch!

Hugz, Kathy