I have been thinking all along that I might have MS, but now I am starting to think maybe Lupus. A few weeks ago, I got out in the sun and broke out in a rash and hives. I called the doctor and he said that the blood pressure medicine I was on had HCTZ in it and it can make you sensitive to the sun. So he prescribed me the same blood pressure medicine without the HCTZ in it. I went outside in the pool yesterday and come in and had the rash and hives again. I heard that with Lupus this is one of the first signs, being sensitive to light and sun. I'm beginning to wonder. I tried to post on the Lupus sight but they don't seem to be as friendly as the MS sight. What do you all think?
Hi. My name is Michelle too and I have a feeling that I was misdiagnosed with MS, because over the last couple of years I have been having a lot of symptoms of Lupus. My symptoms include joint pain, rashes, Raynaud's, sensitivity to sun or UV light. I've heard that it is possible to have both MS and Lupus, but it is very rare. Did you have an ANA test done? I've also heard that it can take a long time to show up on a blood test too. Well, I just wanted to let you know that I am in the same situation. I hope you get some answers soon. Keep trying to post on the Lupus board too. They can be very helpful on that board. I've posted some questions there too and haven't gotten any answers, but it just might mean that they haven't had the same experiences as you and I. Take care.
I am dealing with the same thing. I went to the rheumie just to satisfy my family since my sister has SLE. The did the tests...all were normal till this last time. I came up with anemia and positive for the Ro/SSA antibody. I havent been diagnosed but it is something they are watching closely. My MRI's are normal and my LP was normal. So now I just wait and see. The dr did say that Lupus wouldnt account for the neurological symptoms I have like the burning and vibrating in my legs but he said it would account for numbness, tingling and fatigue. I have been photosensitive for years. Every summer I break out. I am just taking the wait and see attitude now. I am getting around pretty good now and just hoping for the best. That and working on getting rid of this headache from the 2 LPs last week.
Thank you all for your responses. Lilc, I couldn't imagine not talking with you. Everytime I read your post you put a smile on my face. You must be an angel. Thank you for all your support. EStevens64, I can't believe that you had to go through 2 LP's. You must be so strong. I couldn't imagine it. So, if you tested positive for the Ro/SSA antibody, then why have they not diagnosed you? What all has to be positive for them to diagnose you? I do not have the burning and vibrations, I just have the numbness and tingling, but I do have weird sensations of something moving in my legs and knees and I have muscle spasms, I also have the Raynauds Disease and my hands will be different colors sometimes, one may be darker than the other one at times. Also, of course, the sensitivity to the sun. I've also noticed at night, while my husband is driving, I can't handle the headlights on the oncoming cars. Do you do this? Mickey32, I did not know that it is possible to have both MS and Lupus. I don't know much about Lupus. It isn't a death sentence is it? Yes, I have had two ANA test and they both came back negative. I wish it didn't take so long for things to show up. You know that something is wrong and you feel like the doctors don't believe you. When I do find out what is wrong with me, because I know what I am feeling, I am going to take crow to these doctors and make them eat it. Believe me, I won't be quiet. I am tired of hearing that I am depressed. I'm depressed because these doctors, I feel like, got their degrees from a bubble gum machine and don't know their @$$ from a whole in the ground. I'm sorry that you are going through the same thing that I am. I will pray for you all. Mickey32, you are just too nice. I just don't get a good feeling from the Lupus website and I know that I should be patient but I finally put exactly what I thought of them and told them goodbye. I think that I will keep posting here, you all are alot nicer. Thank you all, if you don't mind may I ask where each one of you are from? It would be so nice if you were close by so that I could meet up with each one of you, I feel so close to you guys and it helps to talk with others. This healthboard is awesome and is a lifesaver!! Thanks again for your support and post.
Michelle, I live in Phoenix (HOT) but spend most of my time in Washington, DC (HUMID). I believe God is "lookin' out for me" again - LOT'S of good doctors here in DC, the opposite seems to be true in Phoenix!
I live in a suburb of Chicago, and it's been a hot summer here. In answer to your question, no Lupus doesn't have to be a death sentence. I've read that there are many different forms of Lupus, but with proper treatment it can be controlled, and you can lead a pretty normal life. But unfortunately, it does take a long time to diagnose because it can mimic many other diseases, like MS. I haven't really noticed a big problem with headlights at night, but that might be because I try not to drive at night that much. I have some blurred vision problems sometimes. I know what you mean about doctors not believing you though. I went to see my former primary care doctor when my hands kept chaning colors and I began to have trouble swallowing. She couldn't figure out that my hands were changing colors because of Raynaud's, and she told me that my swallowing problems were basically made up. That's why she's my former primary care doctor. Anyway, I'm glad you found this board, and I hope that you feel better and get some answers too.
I am in Dallas. As far as the Lupus diagnosis I have only hit 3 of the 11 markers. You have to hit 4 of them. I have anemia, photosensitivity and tested positive for antibodies but I still need one more. I have Raynauds as well. That is why the rheumi was so insistant that I keep testing, that and the genetic link. I am not suppose to go back till October unless I feel bad. If this continues though I will. I am still dealing with alot of pressure. It has been 5 days since the last LP. When I sneeze or cough it is unbearable. It just feels like my head is under so much pressure. That and the shooting pains in my arms. I also think my kidneys are getting pretty messed up again. But I am going to give it a few more days and see if it gets better.
Thank you, I just assumed from what I have heard about Lupus it is a death sentence. Then I read a post on the lupus website and a lady just lost her husband 2 days ago to lupus. Thanks for telling me that it is not a death sentence. My symptoms started getting worse after I though that it was a death sentence. Thanks for relieving them. I don't understand doctors sometimes. One of these days they may be in our same situation and I hope that they get treated the same way that they treated others. You know the saying treat others as you would have them treat you. Thanks for your response!!
I'm sorry that you are still having trouble from your LP. Don't wait too long before you call a doctor to let him know what is going on. I will pray harder for you!! I didn't know that you have to have 4 out of the 11 markers to be diagnosed with Lupus. It is so sad that we feel so bad and can't get diagnosed with anything. I had to call my doctor today about me breaking out in a rash and hives after going out in the sun. He told me to stop taking the blood pressure medicine that I am on and he wanted to see me. I have an appointment on Thursday of next week. Then the following week I have an appointment with the MS specialist. I don't feel confindent that I will find out anything. It is sad. Again, I will pray for you!! Don't deal with that headache for too long before calling the doctor. Take care!!
Shelly-I am new to this site. I was actually trying to get on the lupus site. MS and lupus have a lot of the same attributes. Sun photosensitivity for me was not the first symptom. I have been DX with lupus for over a year. If there is a question in your mind ask your doc to run a Smith antibody test. Only people with lupus will test positive for this.
Thank you so much for your response. I will definitely tell my doctor to do the smith antibody test. How is this test done? Thank you so much. I know so little about MS and Lupus. Tell me all you can!!!! Thank you!!!!!
I I tried to post on the Lupus sight but they don't seem to be as friendly as the MS sight. What do you all think?
Hi Michelle, Its me!! do you remember when I said I tried a few posts on the CFS site, well thats excatly how I felt a bit unwanted but then I thought it was prehaps they cant relate to the same problems that I am having? anyway....stay where you feel you get the support, I don't post any of my problems but I can relate to what everyone on here is going through, so I am going to stick with you guys!!
One question though not about MS.....what's this about my accent? how can you tell? I am intrigued? is there something your not telling me about...can you hear me? I am getting parnoid now.....oh dear something else to add to my list ..paranoia!!!!!!!!
We just like your attitude!!! The way you type your sentences we can almost hear you saying them. You remember the name of the 80's song "I always feel like somebody's watching me" You made me think of that when you said paranoia. You are just too funny. Always glad to talk with you. Hope you are doing well.