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Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 6/27/2007 7:58 AM (GMT -6)   

Was dx with peripheral neuropathy. She has had TM transversal mylitis since she was 11 and now this. She looked it up and of course one of the causes was Lupus.

She went to the hospital two nights ago with numbness in left arm and then the side of her face went numb. Later her left leg went numb. The dr. did blood work which came back PN. A few months ago my son went to hospital out here for same thing and without blood work or anything because he was dx as bypolar he was dx as having Conversion disorder.

She is having a really rough week with it. Her mother in law is in town and her husband is in another country so he isn't there to help her. She has two young children. Trying to teach her oldest son who is 4 how she is feeling she held his arms and told him to try to move them. He told her "mommy I can't." She explained to him that was how her arms felt. Now he lays in bed with her and tells her he will take care of her. She is now talking about putting ropes on her husbands hands and tying - (sp) ( I hate this I can't even spell little words) them to the bed so that she can show him how it feels not to be able to move. It'll be easier for him to understand than the spoon therory which she has tried to explain.

I wish she lived here in Ky instead of Calif. so that I could help her. Her in laws all think it is in her head because like so many of us she has done everything from taking care of her family to taking care of his family that lives with them.

My son has the mask, it is noticeable when he is inside but when he goes out into the sun his nose and cheeks turn very bright red, he has a lot of flaking around his chin and when he comes in from the sun he sctraches alot around his chest. I've told him that I want him checked for Lupus. He tells me that it's from the water.

This is all so hard as a mom to know that my children and my grandchildren will and may suffer with this diease.

My son is wiccan and a friend of his cursed the goddess and gods for little things the other night and my son was mad about it. When my son was dx as MMR Mildley Meantally Challenged, I cursed God for it and then asked for forgiveness now with all this I talk to God and ask him to watch over my family but I curse my ansiters for becoming mixed breeds

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/27/2007 10:04 AM (GMT -6)   
ladybug, my heart goes out to you and your children. I'm so sorry that both of your children seem to be suffering from debilitating chronic illness. I really hope your son gets tested for lupus. I find it interesting that if someone has a psychiatric diagnosis, then docs seem to want to attribute all symptoms to that and your son having a conversion disorder diagnosis probably makes it even harder for him to get a diagnosis for his physical symptoms. If you haven't read the topic here about bipolar disease and lupus, you should read it because it demonstrates how docs need to look at the whole picture and take a look at physical symptoms instead of saying everything is psychiatric.

We have no way of knowing if these kinds of illnesses will be present in our children or grandchildren. Having lupus slightly increases the chances that your children might develop it, but most children do not develop it. I do worry about my kids because a lot of my extended family have lupus and RA. My 9 yr old son has arthritis which we now found out is a result of ongoing high levels of strep that are now being treated. So, hopefully his arthritis will be resolved, but there is a chance it could be chronic. So far, my daughter is very healthy.

I am really hoping something can help your daughter - it must be so hard not having her close by. There is a good book I got for my kids to help them understand my illness. It's called "Are You Tired Again?...I Understand". It's a book your duaghter could read to her son and help him do some of the activities in it. You can do an internet search of the title and order it from various sites.

I know this whole thing must be hard for you. Hang in there and take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 6/27/2007 11:26 AM (GMT -6)   
Thank you so very much. Yes it is hard having her so far away. So far my oldest daughter is doing well. She has not shown any symtoms of anything wrong with her.

I love this forum everyone on here is so nice and understanding.

As of yet my results from my Lupus test have come back normal but I know that it can take awhile for anything to show. With all that two of my three children are going through and my other family members it will just be a matter of time.


Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 6/27/2007 12:06 PM (GMT -6)   
   I'm so sorry this is happening to you and your family. My heart goes out to you as well. You all will be in my thoughts and prayers.
                                                    (((Hugs))) Babs
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Regular Member

Date Joined May 2006
Total Posts : 236
   Posted 6/27/2007 2:14 PM (GMT -6)   
Veronica - I understand your story. I and now my daughter have lupus. My son is 5 and starting to show some oddities. He originally had neonatal lupus. I hate it when my kids say they worry I'm going to die all the time and feel the need to take care of me. Feel even worse that some day they may also have to worry about their own lives. They are just babies and it is so unfair that they have to grow up too fast. My daughter, age 10 is also bipolar w/schitzophrenic tendencies. My son age 5 is mildly autistic with dysphsia. I worry about them being labeled and not getting treatment, just like they tried to tell me I was "just depressed/stressed" and refused to treat me for years until the Lupus became deadly and finally agreed to test me.

I feel for you because you are a mom who has to watch this in two generations, perhaps three. It can be an overwhelming burden. Your daughter at least has your comfort and support. That means more than anything, I'm sure. I didn't have that from my mom some time ago, now that I do it makes a world of difference. I wish she lived closer too but there really isn't much more that she can do for me. I need to live my own life with or without the disease. The extra help never hurts though.

I had hemipeliga when my daughter was an infant/toddler. I left an abusive husband and was on my own with no support. I remember people looked at and even asked me if I was a drug addict because I was unable to use one side of my body and shook from weakness. There was no compassion from anyone and my family still expected me to take care of everyone else like I always had. It was very unreasonable and selfish on their part. Everyone, including my family and best friends, thought I was faking my illness - even though they watched me struggle like crazy for 8 years. I finally got the diagnosis and they eased off some. There isn't much guilt they can put upon me now, but they are still unreasonable and/or selfish. I just feel like I can point it out now and say no, now that I have a "valid" reason. It is unbelievable that people can act this way, but unfortunately some do.

My mom and I just talked about how it is wierd that I could have something going on with me that is potentially life threatening but still walk around looking and acting okay. It really confuses her is what I got from the conversation. Others say the same thing. Little they realize how many times I have had to make it "look" okay, just to survive, keep a job, keep friends, etc. One can't see inside my head, my heart, my kidney... no one can feel my pain, lack of strength, exhaustion. What do they expect?

I realized I don't have to be mean or angry to stand up for my rights; just consistent. They have no right to demand from me anything that I can't or don't want to give. Would I expect that from them under the same circumstances? Guaranteed I wouldn't. Perhaps suggest this to your daughter. Fair is fair. It has been hard for me to do that over the years. Boundries aren't something I understood well. It does get easier in time and people will learn to live with it and adjust. Those types of people will just have to find someone else to make all their dreams and wishes come true. She has to survive too. It is hard to be sick and think what is fair and not fair when others try to use or abuse you. I hope the in-laws will come around in time. Some never do though, their concern is themselves and their son. Maybe if they realize how their treatment of her will have an adverse affect on their son and grandchildren, they will ease off a bit. No guarantees though. I did it with my parents and it worked some. I did it with his parents and they flat out told me they cared only about their son, not me and not really their grandchild although they love their grandchild. I had to let that go.

Not sure if this helps any. Please know though people do care about you and your family and my prayers go out to you. If your daughter ever wants to talk, feel free to give her my email address: It helps to have friends that share similar plights. Best wishes - Kristin
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 6/27/2007 3:08 PM (GMT -6)   
Thank you so very much. I feel so guilty and I know that I shouldn't. I told a friend of mine all the problems that my daughter is going through and lucky for my son though he lives with me right now even though he is 24 anyways and I also told her I wish that I could be with my daughter and help her. She explained how her son was going in for knee surgery on Friday. I know that she feels like it is more than what my daughter has to go through or my son but he'll get the cast off and even with the cast on he won't have to worry about his whole body going numb or anything like that.

This is really putting a strain on her and my relationship. I am so glad that I have here to talk to people that understand. It helps to have someone to talk to.

I hope and pray that everyone on here gets to have a good and painless 4th of July.


Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 6/27/2007 3:17 PM (GMT -6)   
Veronica, I'm so sorry you and your children have so many difficulties in your lives. What you described about your friend who's son ins going to have surgery is precisely why this forum has become so important to me. We can come here any day and all day and our friends here don't tire of our complaints, our stories, and our questions, and in addition we all understand each other. I've said before that I don't talk about my illnesses too much with my friends and family, and then only when they ask specifically. I've noticed that when people don't understand a disease and it's all you talk about, they slowly disappear. Well, friend, we're not going to disappear, we're not going to suggest that our own problems are better than yours, we're not going to talk down to you as though you were just neurotic because "you don't look sick" and we're going to understand.

So regardless of how hard live is or how much harder it becomes, you have a support group here that cares for you. I'm so glad you're here.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

New Member

Date Joined Apr 2007
Total Posts : 19
   Posted 6/27/2007 3:47 PM (GMT -6)   
Pat, you summed up that up beautifully. Thanks.

Veronica, I am sorry you are going through this with your family. I hope that you get some time to see your daughter soon. Your are in my thoughts and prayers.

UCTD, Pulmonary Vasculitis, Discoid Lupus, Asthma, Hypothyroidism, Sleep Apnea
Meds: CellCept, Plaquenil, Elidel, Levoxithyroxin, Bactrim, Lamictal, Lexapro, Xanax, Zonalon, Zyrtec, Rhinocort, Prilosec, Advair, Combivent, O2 as needed, CPAP

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 6/27/2007 5:53 PM (GMT -6)   
You all are so great. I've been reading every word that all of you have written with tears in my eyes because I know that your lives are hard with all the things that you have going on in your bodies and yet what you all have written has touched me so very much.

I am so glad that I have found this sight. I am so blessed to have all of you in my life and my heart.


Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 6/27/2007 9:53 PM (GMT -6)   
Hi Ladybug:

I just want to say that I'm sorry that you and your family are going through these difficult times. I'm glad that you were able to find our forum. I know that I've received so much support from this site. Everyone here has been so helpful in supporting me since I found out that I've got cancer in addition to lupus.

I know it's hard at times to keep up hope and faith, but try to keep a positive attitude. Sometimes you need to just take each minute or hour as it comes, and not worry about days, weeks, or months. At least that's what I do when things are so overwhelming for me.

Wishing you and your family the best. Please keep us updated on how things are going.

Best Wishes,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.

Veteran Member

Date Joined Jul 2006
Total Posts : 831
   Posted 6/28/2007 8:45 PM (GMT -6)   
My daughter is doing better, her husband is back in the states. This morning though my daughter was having trouble opening the milk container and her husband was upset with her cause she did finally figure a way of opening. He was mad cause she didn't ask him. LOL.

I am doing better today because I know that she is doing a little better.

Thank you all for your support and help.


Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/29/2007 5:04 AM (GMT -6)   
Hi Veronica, Not much I can add to what everyone has said except I too have a son he is 26 and lives in another state. He is having a lot of physical problems right now. He called me last week and I could tell he was crying. I asked what was wrong he said he didn't know. Than he said he thinks he's got somthing wrong with him. He'll start a day by tossing around 50 lb bags and than within 4 hours he's just drained and can't pick up anything. It said all he wants to do it collasps for about the next 3 days after that. So of course bells and whistles start going off in my head. I actually think it may be somthing from the depleted uranium in iraq or one of the millions of things you can catch from there. He was a medic and was around all the blood of everyone so who knows. Hopfully they get him some answers. It's just so hard when it's you kids.
I'm glad you andyour daughter are feeling a bit better.
God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax.5mg
When things are really dark look up. You can see the stars.

Regular Member

Date Joined Oct 2006
Total Posts : 281
   Posted 6/29/2007 8:17 AM (GMT -6)   
Wow Veronica, it sounds like you and your family have alot of struggles to get through. I wish for you peace and the best of health that you can have with Lupus. You have came to the right place for love and support, the ladies here are wonderful at dishing it out.
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.
Taking Methotrexate, Plaquenell, Folic Acid, Synthroid,Prednisone, Pantoloc, Singulair, Tramadol, OxyCodeine and extra Strength tylenol when needed,and Zytram.

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