Frustrated and Scared
Posted: Mon Oct 29, 2012 2:30 pm
I will try to keep this short as possible. I am a 58 yr old female and I have lupus. Diagnosed in 2000. Nothing has helped my lupus other than prednisone. Since 2008, I started to have symptoms that did not go along with my past lupus symptoms and flare ups. Things such as overheathing almost all the time, even when doing nothing)( painful feet, to the point of not being able to find any shoe that does not hurt, though Crocs are the best so far. Rheumatologist says I have plantar fasciitis and heel spurs. Foot specialist says same but adds nerve damage as does orthopaedic. This is only beginning.
After episodes of overheating, muscle cramps, spasms, leg and arm weakness, and some problems with walking, I was referred to a neuromuscular doctor. Then more strange things happened before I got in to see her. Even though I have had problems with incontinence, I now have problems with bowel movements also. I go sometimes without warning and it is very embarassing and degrading. There has been times I didn't even know I did it until I smelled it, (so sorry). Saw a gastroenterologist to make sure nothing was wrong with digestive area as I do have GERD and have had ulcers. Everything okay in that area.
The neuro ran some tests and based on EMG, brain MRI, and Lumbar Puncture, I was told my diagnosis was "Inconclusive MS" and she referred me to the MS Clinic at Duke. I live in NC and am an hour away from Duke. I cancelled my appt, because I thought she had done everything that could be done and what else could be done to help me. Well, that was in February of this year and things have gotten considerably worse.
The burning in the soles of my feet can be like walking on fire coals or it can be like heat from a fire and though it is mostly the whole sole of feet, it sometimes can be an area on the bottom of feet. And then there is the thing that feels like I have a thick piece of leather stuck to my feet and it drives me crazy because nothing is there. Also, like a piece of tape sometimes stuck to feet.
Legs hurt and muclses are weak. Can't stretch leg muscles like bending over; legs will get weak. Sometims it feels like I may be walking on a cloud or I can see I am walking, but I don't feel like I am in control. Sometimes feel like a wet cloth is laying somewhere on my leg, usually below the knee, just above the ankles. Usually when legs are affected, my arms are too, such as when I am hot. My legs and arms are very weak. Sometimes arms to weak to wash my hair.
In the last year, have been to eye doctor because I will have "eyeball" pain. He says the optic nerve in rh eye is enlarged. Asked me if I had MS and of course, said no. Now my vision has changed drastically. Can't see well with my glasses at all, blurred vision at times and a week ago, had an episode of "flashing" in my eyes. It was like a camera flash going off and it lasted for about 30 minutes. Finally just closed my eyes, couldn't handle it. This past week, I have swelling in my left eye and pain around the socket and again feels like my eyeball hurts.
Now for the latest, I hurt from just under my boobs and up, but it is weird. It is a strange pain, and it is front and back, around my body. It is under my shoulder blades around my ribs, even to touch my boobs hurts. Feels almost like the skin is to tight. Like when you have a really bad cold or the flu and your body has places that you can't touch and older people used to say "they had cold in their body". But, it does hurt. Can't stand to lay on my back, can't stand to wear my bra, but it's not like muscle pain or soreness. Just really weird. For years, I had a sharp pain that would shoot up & down my back like a lightening bolt and make me jump out of a chair (if I was sitting). Now that area is numb (the whole rh side of my back from shoulder blade down to waist.) That same thing has started on my left side too. I get the numbing and have had that for a long time off and on. My hands sometims will stay numb til lunch time or longer or fingers are just numb at any time. I get the feeling of something on my arm like a hair or something crawling and I look and nothing there.
Definitely have some cognitive function problems, which could be lupus related. Used to work in accounting and now I transpose numbers like I am dsylexic (sp). Can't think of what things are called. Lose myself in mid sentence and my memory is really really bad. Spelling is horrible as you can probably tell and I used to be a great speller and my greatest love is writing.
My appt with MS Clinic was Oct 25th, but had to cancel because everything has flared up again and I couldn't make that ride, even for an hour. Rescheduled for Dec 13th. If there is anything you can tell me that may shed some light on this or if there is something specific I should be aware of for when I go to the clinic or questions to ask. I just need help right now trying to get some relief and figuring all this out.
Thanks so much and I apologize for it being so long.
My family doctor says I definitely need to go to MS Clinic. Says my symptoms are classic MS. Saw him a month ago because of ankle and leg swelling and I had the bad shakes. He says there is mention of MS in my records from other doctors that dates back 4 yrs, which would be 2008, but no one ever said anything to me. My rheumatologist says none of this is related to lupus and doesn't know it is and just tells me, "it's not his area or expertise".
After episodes of overheating, muscle cramps, spasms, leg and arm weakness, and some problems with walking, I was referred to a neuromuscular doctor. Then more strange things happened before I got in to see her. Even though I have had problems with incontinence, I now have problems with bowel movements also. I go sometimes without warning and it is very embarassing and degrading. There has been times I didn't even know I did it until I smelled it, (so sorry). Saw a gastroenterologist to make sure nothing was wrong with digestive area as I do have GERD and have had ulcers. Everything okay in that area.
The neuro ran some tests and based on EMG, brain MRI, and Lumbar Puncture, I was told my diagnosis was "Inconclusive MS" and she referred me to the MS Clinic at Duke. I live in NC and am an hour away from Duke. I cancelled my appt, because I thought she had done everything that could be done and what else could be done to help me. Well, that was in February of this year and things have gotten considerably worse.
The burning in the soles of my feet can be like walking on fire coals or it can be like heat from a fire and though it is mostly the whole sole of feet, it sometimes can be an area on the bottom of feet. And then there is the thing that feels like I have a thick piece of leather stuck to my feet and it drives me crazy because nothing is there. Also, like a piece of tape sometimes stuck to feet.
Legs hurt and muclses are weak. Can't stretch leg muscles like bending over; legs will get weak. Sometims it feels like I may be walking on a cloud or I can see I am walking, but I don't feel like I am in control. Sometimes feel like a wet cloth is laying somewhere on my leg, usually below the knee, just above the ankles. Usually when legs are affected, my arms are too, such as when I am hot. My legs and arms are very weak. Sometimes arms to weak to wash my hair.
In the last year, have been to eye doctor because I will have "eyeball" pain. He says the optic nerve in rh eye is enlarged. Asked me if I had MS and of course, said no. Now my vision has changed drastically. Can't see well with my glasses at all, blurred vision at times and a week ago, had an episode of "flashing" in my eyes. It was like a camera flash going off and it lasted for about 30 minutes. Finally just closed my eyes, couldn't handle it. This past week, I have swelling in my left eye and pain around the socket and again feels like my eyeball hurts.
Now for the latest, I hurt from just under my boobs and up, but it is weird. It is a strange pain, and it is front and back, around my body. It is under my shoulder blades around my ribs, even to touch my boobs hurts. Feels almost like the skin is to tight. Like when you have a really bad cold or the flu and your body has places that you can't touch and older people used to say "they had cold in their body". But, it does hurt. Can't stand to lay on my back, can't stand to wear my bra, but it's not like muscle pain or soreness. Just really weird. For years, I had a sharp pain that would shoot up & down my back like a lightening bolt and make me jump out of a chair (if I was sitting). Now that area is numb (the whole rh side of my back from shoulder blade down to waist.) That same thing has started on my left side too. I get the numbing and have had that for a long time off and on. My hands sometims will stay numb til lunch time or longer or fingers are just numb at any time. I get the feeling of something on my arm like a hair or something crawling and I look and nothing there.
Definitely have some cognitive function problems, which could be lupus related. Used to work in accounting and now I transpose numbers like I am dsylexic (sp). Can't think of what things are called. Lose myself in mid sentence and my memory is really really bad. Spelling is horrible as you can probably tell and I used to be a great speller and my greatest love is writing.
My appt with MS Clinic was Oct 25th, but had to cancel because everything has flared up again and I couldn't make that ride, even for an hour. Rescheduled for Dec 13th. If there is anything you can tell me that may shed some light on this or if there is something specific I should be aware of for when I go to the clinic or questions to ask. I just need help right now trying to get some relief and figuring all this out.
Thanks so much and I apologize for it being so long.
My family doctor says I definitely need to go to MS Clinic. Says my symptoms are classic MS. Saw him a month ago because of ankle and leg swelling and I had the bad shakes. He says there is mention of MS in my records from other doctors that dates back 4 yrs, which would be 2008, but no one ever said anything to me. My rheumatologist says none of this is related to lupus and doesn't know it is and just tells me, "it's not his area or expertise".