c57s53
06-04-2007, 12:31 AM
Some of you know me from posting here before. i have been diagnosed with SLE Lupus about 5-6 years now. When I was right out of high school I used to get this area on my thigh that would be tingly and extremely sensitive to the touch and the weight of a sheet would be very painful. Sometimes it was tolerable, other times I would cry from the pain. It would come on and last about 2-4 days, it would reach a peak of painfulness and then gradually fade away. It would be on one side and sometimes on the other, but always on the thigh. I was young (18) and would pretty much ignore it until it seemed over time to get worse (not always, but occasionally) and then it grabbed my attention like "what could this be?" I had numbness in my toes periodically but nothing that I gave much thought to. Then one day I had been outside mowing the lawn (In Florida) when all of a sudden I was so weak I could barely make it in to the house. I called my husband and I laid down in a fetal position and was so weak I could barely talk. He took me to the neurologist and I was admitted to the hospital. My Neurologist thought I had MS, but after an MRI he ruled it out saying I had "complicated migraine."
I continue to read these boards and so many symptoms are exactly what I experience....not all, but many. I get the electrical shocks in my left leg and right side. I have had the tight banding feeling in my right arm and I have been awakened in the middle of the night on numerous occasions with the tightness in my chest, and have also had it many times during the day. My husband always grabs an aspirin for me thinking it is heart, but after all the stress tests (chemical) and ultrasounds and ekgs, everything is normal. I know that Lupus can mimic so many things so i don't want to over indulge in this feeling , but I am seriously wondering if I could have MS as well. Do any of you have more than 1 autoimmune illness? I have actually described to my doctor that sometimes I feel like my internal wiring is coming apart....a very scary feeling. I don't know, It is just so darned amazing to me that I am feeling so many of the same things you all are. One of my biggest complaints is the heat and sun which brings out the neuropathy or nerve pain very intensely to the point where I can't hardly move from the pain. If I stop whatever I am doing and just sit or stand still, it gradually goes away.
HELP!!!!!
Connie
I continue to read these boards and so many symptoms are exactly what I experience....not all, but many. I get the electrical shocks in my left leg and right side. I have had the tight banding feeling in my right arm and I have been awakened in the middle of the night on numerous occasions with the tightness in my chest, and have also had it many times during the day. My husband always grabs an aspirin for me thinking it is heart, but after all the stress tests (chemical) and ultrasounds and ekgs, everything is normal. I know that Lupus can mimic so many things so i don't want to over indulge in this feeling , but I am seriously wondering if I could have MS as well. Do any of you have more than 1 autoimmune illness? I have actually described to my doctor that sometimes I feel like my internal wiring is coming apart....a very scary feeling. I don't know, It is just so darned amazing to me that I am feeling so many of the same things you all are. One of my biggest complaints is the heat and sun which brings out the neuropathy or nerve pain very intensely to the point where I can't hardly move from the pain. If I stop whatever I am doing and just sit or stand still, it gradually goes away.
HELP!!!!!
Connie
Sponsor
duttin
06-04-2007, 09:12 AM
Connie,
Its not uncommon to have to have 2 auto-immune disorders.
If your current neuro is dismissing the new symptoms,get a second opinion.
And yes,the heat will flair up symptom,once the body cools down then the symptoms disappear.
Its not uncommon to have to have 2 auto-immune disorders.
If your current neuro is dismissing the new symptoms,get a second opinion.
And yes,the heat will flair up symptom,once the body cools down then the symptoms disappear.
bella67
06-04-2007, 11:01 AM
Connie,
I can tell you to the day when I felt my body took a turn for the worst. It was in Aug of 2001, a really hot day that I spent at the zoo with my sister and our kids. I felt my self gettiing worse and worse. From there I was on a rollercoaster of specialists, tests, even had lymph node biopsies where they had to open my neck. They couldn't figure it out and finally concluded that I had fibromyagia. I didn't accept the diagnosis because I wasn't a typical case. I continued to try to find out what else could be wrong until about 4 yrs ago when an infectious disease specialist told me my life was killing me, and once I had all of the stress in control I would feel better? Well, It's now 2007 and all though my life is still just as stressful, the episodes I experience have little to nothing to do with anxiety. I am angry that I spent so much time, money, and worry trying to figure this all out. You wonder if you're a hypochondriac, and just when you try to "buck up" and push through how you feel something else pops up that effects your health. I now feel like I have to be careful with germs, and people that might have a common cold, I don't have the stamina nor the energy to just "get up and go". And as much as my mind tells me to keep trying there's another part of me that flashes a signal in my head "caution...caution", that something isn't right. So, now I'm back to trying to get a diagnosis , and I feel so frustrated that I can't just be normal and do the things that I used to do 6 yrs ago.
So, after that long winded explaination, I would have to agree that yes, I feel that I have more than one auto-immune process going on. Not sure what it is, but it sucks. :)
I can tell you to the day when I felt my body took a turn for the worst. It was in Aug of 2001, a really hot day that I spent at the zoo with my sister and our kids. I felt my self gettiing worse and worse. From there I was on a rollercoaster of specialists, tests, even had lymph node biopsies where they had to open my neck. They couldn't figure it out and finally concluded that I had fibromyagia. I didn't accept the diagnosis because I wasn't a typical case. I continued to try to find out what else could be wrong until about 4 yrs ago when an infectious disease specialist told me my life was killing me, and once I had all of the stress in control I would feel better? Well, It's now 2007 and all though my life is still just as stressful, the episodes I experience have little to nothing to do with anxiety. I am angry that I spent so much time, money, and worry trying to figure this all out. You wonder if you're a hypochondriac, and just when you try to "buck up" and push through how you feel something else pops up that effects your health. I now feel like I have to be careful with germs, and people that might have a common cold, I don't have the stamina nor the energy to just "get up and go". And as much as my mind tells me to keep trying there's another part of me that flashes a signal in my head "caution...caution", that something isn't right. So, now I'm back to trying to get a diagnosis , and I feel so frustrated that I can't just be normal and do the things that I used to do 6 yrs ago.
So, after that long winded explaination, I would have to agree that yes, I feel that I have more than one auto-immune process going on. Not sure what it is, but it sucks. :)
zandvoort
06-04-2007, 12:00 PM
wow Bella- I am really sorry to hear such a frustrating story. I think you are entitled to use angry faces instead of smiley ones! You are in my thoughts and wishes for better health soon.:)
c57s53
06-04-2007, 12:07 PM
Bella and Nuffs.....Thanks for your replies. I haven't seen my Neuro for 5-6 years now. He actually moved away from here and I need to find another one, but he is the one that diagnosed me with Hypothyroidism and Fibromyalgia and he referred me to a Rheumatologist who eventually diagnosed me with Lupus. I never saw the Neuro after his referral to Rheumy. I had an episode after seeing the Rheumy where I was sick, took a shower and had sharp nerve pain fly into my face every time I took a step. It lasted for about 3 days and I was walking very softly and light on my feet so the pain wouldn't be as sharp. Seemed that if I walked normally the pain was very sharp and intense, and the lighter on my feet I was the more "gentle" the pain was if that makes any sense. I called my Neorologist at the time and he suggested a LP might be in order but then he decided to let it go and see what happened. Then he moved. I just don't want to put everything on the Lupus, but it is very confusing sometimes because I am so super sensitive with the sun and the heat, or 1 or both, it is difficult to tell when i am outside because usually if you have heat you also have sun. I will be looking for a good Neuro. anyway with this terrible neuropathy I have. I don't want to invite trouble but just want to make sure all Avenues are checked and cleared.
Connie
Connie
Bearygood
06-04-2007, 12:12 PM
Hi, Connie -- WOW! 5 or 6 years? Definitely sounds like finding a new neuro is something to focus on. You have a lot going on and with your history and new sx, perhaps they can help put it into perspective. Do you have copies of your records? Also, I'm curious -- since your neuro dxed you as hypothyroid, do you see an endocrinologist and have your blood work checked at least once a year?
c57s53
06-04-2007, 04:18 PM
Hi Bearygood....Yes, I do see an Endocrinologist for Hypothyroidism and Diabetes. I was diagnosed with Diabetes about 2 years ago so my PCP referred me to him. Seems that everything is in order there. I just keep thinking about all these years ago when the tingling and very sensitive thigh stuff first started, and 1 thing I left out was that I still get this with my thigh, but now it is just numbness and sometimes it seems like it is numb but then all of a sudden it feels so painful from so deep within. It is a constant now rather than coming and going, however, the numbness comes and goes now...no more tingling and sensitive skin, just numbness. I am 54 now so this has been ongoing since I was 18. I suppose it could be from the Lupus, but I have never had a doctor answer that question for me as well as others....it is time to see a Neurologist. Any thoughts?
Connie
Connie
Bearygood
06-04-2007, 04:38 PM
Whew! From one hypo to another, I'm relieved to hear that. :) Re: your symptoms, hard to know but other than the shocks, tingling and numbness can be from many reasons, including pressure on a nerve because of a back problem. Even with an MS dx, I'm still investigating other possible causes for some things that don't "wreak" MS and have a regular neuro appt. in 2 weeks. Good luck to you -- but you know the first step is to definitely find a doctor! If you're pleased with the care you get now from your endo or PCP, I'm sure they can make a recommendation. And, with a call from them, you also at least increase your chances of getting an appointment sooner! :)