It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Neurology Message Board

  • seeing the neurologist friday-scared

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 02-18-2004, 10:17 AM   #1
    rekha
    Junior Member
    (female)
     
    rekha's Avatar
     
    Join Date: Feb 2004
    Posts: 31
    rekha HB User
    seeing the neurologist friday-scared

    Hello, I am Rekha, who posted few days ago about my symptoms. I am also pregnant. I see the neurologist on Friday.

    I hope you all can help me, I am sleep-deprived and in a lot of burning pain!!!

    After doing research on internet, I am not sure I have RSD. I would like to give you an overview of my symptoms.

    I hurt the sole of foot near big toe on Feb 5th. 2 days later tingling and burning appeared, called podiatrist, said to ice area....iced for few days

    icing provided some comfort but then I felt burning in other foot, leg, hands an arms, I still cant believe the rapid onset of this burning pain. I cannot sleep at all at nights..and the only medicine I can take is benadryl which doesnt cut it. I am having sensitivity to cold, hot.

    However, I have no swelling or edema in the area I hurt, there is no coloration changing. Don't you have to have this?

    What can the neurologist do for me?

    how will I get thru 9 months like this with no sleep and burning symptoms getting worse? It has only been 2 weeks.

    I am sorry if this post is upsetting to anyone, I just have nowhere else to turn to.

     
    Sponsors Lightbulb
       
    Old 02-18-2004, 11:18 AM   #2
    Jewel2
    Inactive
     
    Join Date: Nov 2003
    Location: Durango, Colorado
    Posts: 1,432
    Jewel2 HB User
    Re: seeing the neurologist friday-scared

    It's good you're seeing a neurologist soon. Just wanted to mention that if you do have RSD icing is a bad thing to do. Somebody explained to me that one reason it's bad is because it restricts even more circulation in an area that is already being cut off. Whatever the reason, you'll read everywhere not to ice RSD.

    Please let us know the outcome of your visit.

    Best wishes,
    Julie

     
    Old 02-18-2004, 07:53 PM   #3
    Horsie Nutt
    Senior Veteran
     
    Horsie Nutt's Avatar
     
    Join Date: Jun 2003
    Location: Florida
    Posts: 814
    Horsie Nutt HB User
    Re: seeing the neurologist friday-scared

    Hi Rekha. I am so sorry to hear of what you are going through, especially since you are so limited with what you can and can not take/do since it will also affect your baby.

    The MVA I was involved in was back in Dec. 2002. The RSD started in my hand and started spreading to my wrist, but early, aggressive treatment helped prevent further spread, or at least that is what I like to think. I do have swelling in my hand and wrist, but it is not as bad as it used to be months ago and right after the accident. I have also never had color changes between my 2 hands, except on a few occassions this winter my RSD hand seemed a little more pale. I started with a cold burning pain, and it was a while before it changed to a hot burning pain, now I get both. Everything I had read mentioned hot burning pain, not cold, so I questioned my dx too. I wondered if I really had RSD or not myself because of the cold burning and the lack of coloration change in my affected limb, but let me assure you, I *do* have RSD, much to my regret.

    They changed the name of RSD (Reflex Sympathetic Dystrophy)to CRPS (Complex Regional Pain Syndrome) because of the complexity of the signs and symptoms of the disease/condition. Not everyone with RSD/CRPS has the same symptoms, nor do they have the same degree of the same symptoms. It is definitely a better name for this monster, though most people still refer to it as RSD. There is no rhyme or reason to it, and it is not understood why it affects some people one way and others a different way, why some people get it full body and others don't, etc.

    I haven't read your other post yet, but most of us see Pain Specialists, experienced with RSD. These docs are usually Anesthesiologists. If you haven't already found one in your area, it would probably be a good idea. Also, Julie was right on the money. ice will only make RSD WORSE, and can, and WILL cause spreading. A lot of us use heat to help soothe the pain, especially during a flare-up. Several of us have paraffin wax machines that are worth more than gold when our pain becomes acute. I like the microwavable gel heating pads to wrap my hand in, and I sit under an electric blanket every day and/or night to keep the chill away when it's cold, and also to keep me from freezing even when it's not cold. My body yemp is waaaaaay out of whack. Hot soaks are great, adding epson salts help also. I know you said you are sensitive to both cold and hot, but if you can stand it, try a warm (not hot) bath or soak when your pain is bad. If it makes it worse, of course, don't do it, but maybe, just maybe, it might help a little.

    I wish you my best, and will be keeping you in my prayers. I hope I haven't repeated what everyone else told you in your first post. Also, do a lot of research on RSD on the internet. I pray that you don't have it, but being informed will help you make better decisions on your treatment(s) should you have it, and that goes for any condition. Also remember, the final say so in your treatment is up to YOU, not your doc. Don't let him do something that you are not sure of or don't want to have done. Trust your judgement, you know your body better than anyone.

    <Hugs>
    Cathy/Woot

    P.S. when is your baby due? Do you want a girl or boy, or does it matter? Is this your first? <Hugs>

     
    Old 02-19-2004, 07:23 AM   #4
    rekha
    Junior Member
    (female)
     
    rekha's Avatar
     
    Join Date: Feb 2004
    Posts: 31
    rekha HB User
    Re: seeing the neurologist friday-scared

    thanks for those comforting words. I am in a lot of agony, I think my icing made the condition worse. I am scared that my dr's will not believe me. Is a thermography the only way to get a diagnosis? Any other test? I don't know if they will do that test on me.

    what is my best option? I am going to see a neurologist, can he help me diagnose it as RSD? Do neurologists know of this disease?

    I hope my doctor tomorrow can help me. I am in agony, and I cannot believe this all happened so quickly. I don't know what will happen to me. I am very scared and alone and my family doesnt believe me. they think it is a symptom of being pregnant.

    I am not a strong person, and the thought of not having anyone believe me has led to thoughts of suicide. While this burning pain is not allowing me to sleep.

    should I go get a thermography on my own outside of my hmo? will this diagnose this as RSD?

    thank you everyone. Sorry about the rambling, and negative talk, but being sleep deprived, in constant burning pain, and pregnant has something to do with it.

     
    Old 02-19-2004, 08:42 AM   #5
    Jewel2
    Inactive
     
    Join Date: Nov 2003
    Location: Durango, Colorado
    Posts: 1,432
    Jewel2 HB User
    Re: seeing the neurologist friday-scared

    Hang in there Rekha. Maybe you'll get some answers tomorrow from the neurologist. If not then I would arrange to see another doctor, perhaps a pain management doc who treats RSD. There are other tests to support a diagnosis, such as a bone scan or regular x-ray, but I don't know if they'll do those with you pregnant. I think that sometimes getting an RSD dx means ruling out other possibilities.

    Are you sharing your fears and pain with your husband? Is he being understanding and supportive? There's a mother (Edna) of an RSD patient on this board and a wife (Angie) who post here. If your husband needs support I'm sure they would be able to help him. They're both wonderful people.

    I wish you would promise us that whenever you feel suicidal you would tell your husband, somebody else or post here. Don't let whatever you have (RSD?) be the victor. You have to fight it, for yourself and your unborn baby.

    I'm praying for you.
    Julie

     
    Old 02-19-2004, 10:03 AM   #6
    rekha
    Junior Member
    (female)
     
    rekha's Avatar
     
    Join Date: Feb 2004
    Posts: 31
    rekha HB User
    Re: seeing the neurologist friday-scared

    do you know of any doctor specializing in RSD in the San Francisco bay area?

     
    Old 02-19-2004, 10:19 AM   #7
    Jewel2
    Inactive
     
    Join Date: Nov 2003
    Location: Durango, Colorado
    Posts: 1,432
    Jewel2 HB User
    Re: seeing the neurologist friday-scared

    I'm in Colorado, so I don't know about San Francisco. There is a California member; maybe she will know. You might try calling your insurance company for a list of providers and then 'interview' the doctor's office over the phone. I have often found that the receptionist/nurse reflects the character of the doctor - not always, but often.

    Best wishes,
    Julie

     
    Old 02-19-2004, 06:34 PM   #8
    sharon1030
    Senior Veteran
    (female)
     
    sharon1030's Avatar
     
    Join Date: May 2002
    Location: NY
    Posts: 3,176
    sharon1030 HB User
    Smile Re: seeing the neurologist friday-scared

    Julie, I 100% agree with what you said about the receptionist and other workers in a doctor's office being a reflection of the doctor. For the most part, a doctor who hires people with attitudes will have one too. Otherwise, he/she wouldn't allow those types of people to work for him/her.

    Rekha, I know nothing about CA, but is Cedar's Sinai near you? If it is, I have a wonderful doctor for you. He was my doctor here in NY for years, but two years ago or so, he left and went to CA. Let me know if you live near there. Please try to hang in there. I think you're jumping the gun as far as the RSD. You still don't know if you have it. I know you're in pain and not sleeping well and that in itself, may cause you to be thinking the way you are. I'm really sorry you don't seem to have support from your family. Maybe after you see the doc tomorrow and have a possible explanation of what's going on with you, they'll be more understanding. I hope so anyway. Try to hang in there. There are a lot of people out here praying for you.

    Sharon

     
    Old 02-22-2004, 05:05 AM   #9
    Horsie Nutt
    Senior Veteran
     
    Horsie Nutt's Avatar
     
    Join Date: Jun 2003
    Location: Florida
    Posts: 814
    Horsie Nutt HB User
    Re: seeing the neurologist friday-scared

    Hey Rekha, Julie and Sharon are correct, but regarding the tests for RSD. There is no truely definitive test for it. Dr's can do the x-rays and bone scans, but RSD does not always show on them, though there are still some dummy docs (or should I say P.A.'s? <remembering my ER visit from h***) that thinks that it *ALWAYS* shows up, even 2 weeks after the injury (they are looking for bone density loss with the x-rays, etc.). Many docs do various kinds of blocks to test for RSD, but the main way to dx it is the symptoms that you have, even if they aren't like mine, or Sharon's, Julie's, or anyone else's.

    Stress is a main factor that can make your pain worse, even if you do not have RSD, so, even though I know this is ridiculous to tell you, try not to worry too much. There are some threads on here that you need to read. One was started by me, but not all the poems and stuff are from me, but I put them all on one thread, and the other was started by Julie (Jewel). They have both been bumped up recently, so you should be able to find them on the first page when you come here to HB. Some of the poems, and a letter written by RSD_Angel will help you, and print them out to show your family, it just might help them understand also.

    I am going to go look for a newer post from you to see if you let us know what your neurologist said. I hope he helped calm your nerves some.

    Keeping you in my prayers.
    Cathy

     
    Old 02-22-2004, 09:06 AM   #10
    Gina2005
    Senior Member
     
    Gina2005's Avatar
     
    Join Date: Feb 2004
    Posts: 102
    Gina2005 HB User
    Re: seeing the neurologist friday-scared

    Hi Rekha

    I am going to UCSF MT. Zion Pain clinic right now in the city. I am not sure where you live in the bay area but it would definitely be worth the drive to this place. I live in the north bay outside of Napa which is just over an hour to the city but with traffic it takes 2-3 hours to get there from either direction. I'm sure you know how that is.

    I don't think you can refer yourself so you will have to ask your current doc for a referral. I'm sure they have a website that would have more information. Stanford would also be a good choice. Both UCSF and Stanford are top teaching facilities and are well known for great care.

    I wanted to add if you go to UCSF, I don't think you pick your doctor inititally (I didn't) and you will be seen by students sometimes, usually with your doc present also. I like that because I have an older doctor with experience and a med student who is learning the newest treatments so I am getting the best of both worlds.

    Gina

     
    The Following User Says Thank You to Gina2005 For This Useful Post:
    RSD707 (05-28-2012)
    Old 02-23-2004, 01:46 AM   #11
    sealover
    Veteran
    (female)
     
    Join Date: Aug 2003
    Posts: 304
    sealover HB Usersealover HB User
    Re: seeing the neurologist friday-scared

    Hi Rekha,

    First, congrats on your pregnancy. I'm so sorry that you are going through this horrible ordeal. Please hang in there. It is normal to feel depressed and anxious when dealing with serious pain, the possibility of having RSD, and the unknown. It is even more difficult when your family doesn't believe what you are experiencing.

    Perhaps your family doesn't understand at all what RSD is, so maybe you could print out some info you find on the internet and give it to your family to read. Sometimes family members may be in denial that a loved one may have a serious health problem, and so they may not offer any support to their loved one who is suffering. Or some families find it difficult to deal with the possibity of a loved one having an illness. Or some people are simply insensitive to other people's suffering. My parents are very supportive of me, but my brother and sister could care less what I am going through as they are very insensitive. But you know what, there are people in this world who will be supportive for you, like the people on this board, for instance.

    May I suggest that you seek professional counseling since you sometimes feel suicidal (this is one sign of depression)? Then after you give birth to your baby, if you are still feeling depressed and/or unable to sleep, antidepressant and sleep medications may help you a lot. A psychiatrist or another M.D. can prescribe these meds for you.

    I am also trying to find out if I have RSD for sure. I was told by 2 podiatrists that I may have this disorder (caused by a left foot injury last Nov.), but they weren't 100% sure that I have RSD. I am scared...I pray every day for my own healing and for healing for other people who suffer from RSD. I don't need this in my life right now...nobody does. But I need to find out for sure whether I have RSD or not.

    I hope you find out that you don't have RSD. Please let us know what happens in your case.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Seeing a Neurologist Next Week... What do you think? ljd88 Neurology 2 07-29-2007 05:27 PM
    10 yr old son's left eye turns out. Opthamologist referred to Neurologist... kippy6 Neurology 16 11-17-2004 09:18 AM
    Neurologist, What to expect? SkipperH Neurology 8 04-28-2004 02:17 PM
    what to ask a neurologist injured betty Neurology 5 04-01-2004 01:21 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 04:33 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!