View Full Version : Not officially diagnosed

05-20-2009, 09:08 PM
About 22 years ago, I went to an urgent care for a rash on mu nose and cheeks and on my upper chest and outside on my arms. I was also swollen all over. The doctor ran bloodwork and referred me to a neurologist due to the bloodwork, but said the rash was probably sun poisoning.

I went to the neurologist who said I had rheumatory arthritis and he started me on an array of meds that didn't due a lot. He treid many different meds., and I stayed on the ones that seemed to help the best. The rash countinued to come back every time I got in the sun for any amount of time.

About 12 years ago, the rheumatologist changed my diagnosis to fibromyalgia. He also added cortisone shots in my shoulders and hips. This actually did briing some relief, but the pain, inflamation, rash from sun, and many other problems continued.

Then about a year ago, I started having trouble with my eye going from side to side making reading difficult at times. I started to get migraines, but took all this in as getting older and turning 40. At about the same time, my asthma started to get bad. My doctor has had to up my Advair to the highest dose, along with daily breathing treatments, and I'm still using my emergency inhailer every day. I kept having random fevers often. Also, I started to test positive for protein in my urine.

THe first week of March this year, my doctor though I had a stroke. The right side of my body went numb from the top of my head to my toes. My voice even went hoarse, I had trouble with word recall, and I had a stutter. I lost my ballance a lot and had episodes of shrt term memory problems. Also, I lost almost 50% of the strength on my left side, and was absolutely exhasted most of the time. I was scheduled for an MRI and sent to PT. The numbness and my strength improved some, and the MRI came back with a spot that was questionable for a demilating (not sure I spelled it right) disease. I was sent to am MS neurologist.

The MS neurologist sent me for another MRI and had a lot of blood testing done. Meanwhile, I had another "stroke". Not only was I back to where I was before, things were even worse, and its not getting much better. I even ended up having a seizure. I was an epileptic as a child, but haven't had a seizure in over 20 years.

The test results came back last week, and the neurologist told me to go back to the rheumatologist, because the bloodwork points to lupus. He also saw a spot in my brain where something has caused damage, but not a stroke or MS. He said it could be from Lupus. He has scheduled a visiting nurse to come out to do IV steroids to see if they will help. He is also sending me to a Speach/Lang. Pathologist.

Oh, by the way, I still get the rash in the sun.

Does any of this sound familiar to anyone? I'm so frustrated that sometimes I cry myself to sleep. I just want answers and the correct help. I've been out of work for 2 1/2 months now, and have no idea when I'll be able to go back. I'd appreciate any feedback.

05-20-2009, 10:15 PM

I'm Rob, welcome to our group. I read your story, and many of your symptoms are familiar to me. I was diagnosed with Systemic Lupus five years ago, and then Multiple Sclerosis one year ago. It's known as an overapping illness. People can have both. I have always been very sun sensitive, but when I was younger it wasn't really that odd as I have very fair skin and I'm of an Irish background. I would get a bit of sun, and have a bad reaction, like I had the flu in the summetime-I thought it was normal to be terribly ill after a mild sunburn.

When I was 34 I started having all sorts of problems-terrible fatigue, cognitive problems, joint pain, and rashes on my arms, chest, and legs. Long story short, after alot of BS I was diagnosed with Lupus. My life took a major turn, and I went on full disability.

Around two years ago I started having numbness on the right side of my body. Not total, but enough to cause that side to be "lazy". My right foot would drag. I suddenly found it very hard to read-when I would look at a page in a book, or a computer screen, as soon as I tried to read, my eyes would suddenly dart from left to right so quickly that it blurred everything. It would only last a second or two, but it happened everytime I tried to concentrate and read, and it still does to a certain extent. I also have electric shock type pain in my hands and feet.

I saw a Neurologist, had multiple tests done over a period of many months, got a second opinion, and was diagnosed by both neuro's with secondary progressive MS on top of the Lupus. I've never had anything like a seizure, nor have I ever had a stroke-my numbness comes from the Myelin around my nerves breaking down. Myelin, is like the insulation around an electrical wire. If it wears through or breaks down, the metal core of the wires touch causing a short circuit, that is basically what MS is. De-myelinization-the breakdown of the insulation covering the nerve pathways.

People can have central nervous system problems from both Lupus and MS. You could have one, both, or neither. These things can be terribly difficult to diagnose. I suggest you start writing down and keeping track of your symptoms, even the odd ones that don't happen all that much. See your neuro, see your regular Dr. as well as a rheumo and any other pertinent specialists. You may get good advice, and you may get dismissed as a hypochondriac. Hopefully you have health care professionals who will listen, and help. Above all, be persistent. There's no law against being a proactive pain in the butt patient. And keep doing what you are doing by coming here as well as other places to ask questions. You are learning what you can about what might be affecting your health, this is a good thing. An educated patient can be their own best advocate.

When you say you need answers, I totally understand. You are here because you know something is wrong, so I hope my information about what's possible isn't going to scare the heck out of you. You need answers. If you end up with one of these conditions, know that there are effective ways of managing these disorders, and it's by no means the end. People survive, even thrive despite these diseases-I'm one of them. I hope you can find the answers, and treatment that you need. Please, make yourself at home here, and ask any questions you need to.


05-22-2009, 09:52 AM
Hello and Welcome;
I cannot add anything more or better than what Rob has provided to you. I just wanted to make sure that I welcomed you to our family and to let you know that we are here to help you, provide some answers and some understanding, and to make sure that you know that you are not alone!

Peace and Blessings

05-22-2009, 11:19 AM
Just wanted to welcome you to the forum. Sorry you have had such a difficult time. Rob is always so kind to share his difficult journey here in the hopes that his experience will help someone else who is struggling...there is nothing I can add, except to wish you well and tell you there is always support for you here.

Have a nice weekend.


05-22-2009, 11:43 AM
I am pretty new here, but every one here is very supportive and knowledgeable, It sounds like you have had a rough time. I hope you can get some clear direction. Hang in there.

Angel Oliver
05-22-2009, 11:57 AM
Just wanted to say that Rob and everyone has done a good job and said everything.Yes..your story is quite similar to me too who still trying to find an 100% diagnosis.I don not have seizures,but can identify with everything else you wrote.You hang in there! We are all here and will help you where we can.Glad you found us.

lots of love