Hi guys, back again and feeling not to bad at the moment. I just recieved a call from the hospital where I saw the MS specialist and apparantly she has requested another evoked potential, don't understand why, the last one I had was normal last year. Also need to have an EMG test, what is that all about? Also have to have a brainstem test awell. I understand the EP But the other two threw me and considering she thinks maybe I dont have MS why is she doing this. My only positive test so far is the Oligoclonal bands in my CSF with a clear brain MRI...Bit confused here...
If you compare tests with previous results, any changes can signal a more definitive diagnosis. Testing can get OLD! But, trust your doctor because she is trying to get to the cause of your concern. Think of the initial tests as benchmarks. I was tested in 1982 and again in 2002. My doctors were able to measure the differences and with 100% certainty diagnose PPMS. At this stage, your doctor is proactively seeking to assist you. When you have that kind of doctor, you are blessed in my opinion.
I know this can be extremely frustrating at times... I have had so many tests over the last 3 years that I wanted to give up! I have the same thing as you (positive obands but NO lesions in entire brain/spine). I just had another spinal tap yesterday (1st one back in july 07) to help my MS specialist make a diagnosis. She said that 10 % of people will never demonstate lesions on their MRI. Although rare, its possible. So thats 10 out of every 100 people. Just try to stay positive about all the reordering of tests because your doctors trying to be very thorough. I was misdiagnosed with lymes disease because of an incompetent physcian and ended up having surgery for no reason due to the damaging antibiotics I was put on. So what I've learned through this entire mess, is to be patient and trust the doctors that are afraid to diagnose you. My LLMD (lime literate MD) diagnosed me before running any tests and look where I ended up. So good luck with your testing. Keep us posted.
Hi guys....tarapags1107.....Very interesting to read your post, I to, am going through the same "is it Lymes?"...Shall we treat you for it?...However they have now done two lot of blood tests, currently awaiting the results of my second test. I am VERY mixed about this Lymes thing. I am not trying to be negative and I certainly don't want MS..Who does?...However having the O bands present points more towards that area than Lymes. Thats not say that other ilnesses don't present with O bands.
It is very frustrating, yet I am very gratefull that they are being proactive in searching for an answer. I certainly don't want medication for the wrong thing.
My MS specialist said that having O bands in the CSF is an indicator of MS but there Must be visible evidence of brain lesions to accompany this in order to diagnose, yet other people say otherwise.
I will just have to wait and hope that at some point they will find an answer. I understand your frustrations tarapags and I think I would be very angry at what you have gone through. How do you manage to keep sane?................
Keeping sane?? That was a toughy. Thank god I have a supportive fiane who has stood by me these last 3 years. Any lesser of a man would have bolted for the door a long time ago! It wasn't easy. I am also in the medical field which makes it worse at points because too much info can be a destructive thing at times and cause unnecessary worries. I doubted myself and questioned myself alot during the first two years when my doctors couldn't find ANYTHING. My PCP was and still is, a complete jacka$$. I had to pretty much be my own advocate and (this is where being in the med field helps) vouch for my own referrals to specialists to find out what the heck was wrong with me. I had suspicion of neurological symtoms in the beginning, but my original neuro did the physical exam and yada yada and could not find anything wrong so deemed it unecessary to do anything more but an EMG/Nerve conduction study tests. Like the typical doc, they questioned my family life, stress levels and atributed everything to that. (even though I had chronic fevers and rashes on a daily basis). So then I saw a rheumotologist who gave me some hope. She was the first doctor who listened to me and actually understood what I was saying. She took one look at my "butterfly" rash and said she was leaning towards lupus, but she'd have to run the tests to affirm it. Well, needless to say, everything was normal and I had no evidence of any rheumatic disease. The loads of blood work she ordered made the people at the registration booth in the hospital nuts to have to put the tests in for me! They couldn't find half the tests in the pamphet! She was very thorough!! She even repeated the tests at different intervals (6months-1 year later) and classified my case as an "unspecified autoimmune complex" of unknown orgin. In the meantime, I had seen an endocrinologist, gastroenterologist, infectious disease specialist, allergist, and immunologist. (I was referred to the allergist and immunologist from the work connetion at my job since I had a swollen lip at work one day and had to go to occupational health for evaluation). There was a point inbetween doctors where I gave up seeing anyone for a whole six months or so. I was incredibly frustrated and trying to pass radiology school at the same time so I figured I had to concentrate more on my clinic and classes before my health. My parents thought I was a hypochondriac and at first did not believe me. They had always known me as a very healthy and active person, and that I was just simply too young to have anything majorly wrong with me.
Well, the endocrinologist, allergist, and infectious disease specialist all found nothing in my blood work that was alarming. But, my rheumotologist wanted me to get a skin biopsy so I showed my allergist the prescprition and he said that his partner (an immunologist) performs skin biopsies in his office. I made an appointment with the immunologist and went from there. He was an amazing dr. He was also a D.O. not an M.D. which makes a difference. DO's look at the entire picture of whats going on with a person and have different approaches to medicine than MDs. He wanted to know my entire history and told me that he would figure out what was going on (he wanted to wait on the skin biopsy since he thought it was something systemic and autoimmune). He did his bloodwork workup and eventually sent me for a colonoscopy and small bowel biopsy (to rule out chrons and other digestive autoimmune disease) and sent me for an MRI of my entire spine and brain. He did not want to leave out anything and was determined to help me out. He said that if he couldn't figure my case out, he would send me out to eastern mass, and they would. Well, my MRIs were clean which I allready knew because Im an MRI tech and my friends had thrown me in the scanner before to check but he wanted a legitimate one read by a radiologist. The digestive tests were also all normal.
Around the same time, I was watching a case on mystery diagnosis (as if being in the medical field isn't enough, I am also a geek and watch the shows at home!) and saw a young girl who was experiencing alot of the same symtoms I was and her original lyme tests were negative (routine blood work). The doctor who treated her ran "specialized tests that look for lyme in a different aspect". Well the girl got better after her treatments and I thought, this is what I have to have. I had not yet recieved a spinal tap at this moment. So, I went to see this Dr. on mystery diagnosis in hopes that he could help me out. Red flag #1 (most "lyme literate MDS" do not accept insurance) so I had to pay out of pocket. This shoulda turned me off, but I was so desperate for an answer as to why I was constantly feeling like crap. They ran their special blood work and the Dr. said that he had no doubt in mind that it was lymes from my results and wanted me to begin IV rocephin treatment since I had so many neurological symptoms. The office also rips you off by charging you to go over your results (via phone consultation) for a whopping 250 bucks. But I forked over the money in hopes that I would soon, someday, feel like my original self. IV antibiotics need to be inserted through a PICC line so I got set up with a local infusion therapy company. I developed a blood clot 3 weeks into treatment and had to get my PICC line withdrawn, taken off birth control pills (due to the clot), and a new PICC line inserted the same day to continue treatment. Blood clots are very common with these lines, and can be dangerous. So, I continued treatment, not feeling any better and developed gallstones due to the medication. I had a severe gallbladder attack and ended up going to the hospital were they did emergency surgery. My lyme doctor found out (since I had to stop treatment while in the hospital and told him) and called me immediately (for free surprisingly) and told me that unfortunately I was one of the "victims" this happened to and that we needed to continue treatment. Nice for him to tell me after the fact that this is very common with the medication. Before my surgery (sorry this isn't in chronological order) I began experiecing severe facial pain and was referred to an ENT who told me that it was neurological and said that I should see a neuro. I saw the neuro who said I was experiecing trigeminal neuragia and wanted to run some tests. He opted for the spinal tap and said it was very unlikey (given my negative MRIs) but wanted to rule ms out completely. I told him I was being treated for lymes currently but was not feeling any better. I got the spinal tap done the same day I developed my first gallbladder attack and ended up in the hospital that night. I told my lyme literate MD that I wanted to stop treatment because my spinal tap was positive for Obands and increased IgG index. He tried to convince me otherwise, but I declined further treatment. My neuro repeated my EMG/nerve conduction study test (normal) and referred me to my MS specialist who I'm currently seeing now.
She ordered me a complete workup including evoked potential testing, repeat MRI (on a strong 3T magnet), chest CT/x-ray (to rule out sarcoidosis), and more bloodwork to rule out vasculitis and other immune diseases that can produce obands. Well everything came back normal so she opted to repeat my lumbar puncture (which I had done yesterday) to confirm a diagnosis of MS. She wants to start me on treatment if this comes back positive, but I'm kinda reluctant to start. I just don't want to make a mistake like I did last time with the lymes and harm my body again. I also don't understand how they are going to be able to tell if treatment is working for me if I have no lesions because thats what they base these DMD agents on. I might opt for no treatment until I show more evidence, I'm not exactly sure yet. I don't want to put myself at risks for progression if I do have MS either, which pushes me to starting.
My jouneys been a long haul, but I am getting closer at least. Hang in there, the evidence will show up sooner or later. Do not give up on yourself or doubt yourself. Good luck,
Wow. Tarapags, your story is incredible. You've really been through the ringer.
Good for you for being so proactive with your health. I was lucky in that it only took a few months to get a diagnosis. It was still a long few months though, filled with self-doubt, and I have a great primary doctor who did everything he could think of to find an answer. If I had read this post during that time it would have given me a lot of courage! I admire your patience and dilligence very much, and it's a shame you had to go through that treatment. It sounds really scary.
I hope that you and Topsy get some answers soon!
Avonex started 11/07,
Stopped 4/10 due to no insurance.
tarapags1107.....What an incredible story you wrote, and what an incredible person you are to have one through all all this and remain sane. Its a long and frustrating road that some of us are going down, knowing only to well something is very wrong. It was interesting to read your Lymes experiance. I saw a guy who had an interest in tick borne diseases and he was convinced I had Lymes disease without testing 1st. I then saw another doctor who thought it may be a possibility and decided to run the various blood test to try and find out. I had extensive testing quite a few times, and each time it came back negative. It was explained to me that even though theses tests are never a 100% accurate, it was enough for them to rule it out and NOT treat me with a heavy dose af anitbiotics. After reading your story I am pleased I didnt have to go down that road. My more recent post say how frustrated I am with this whole process and that after visitng the infectious disease clinic, they suggested a HIV test, I have to say I was a little horrified, but after reading the replies and advice from people, it really is just another effort on their part to rule other things out.
I do beleive my MS specialist is being very proactive and I should not complain at her efforts to try and find out what is wrong with me. I am aware that Oligoclonal bands are present in other illnesses as well as MS, and so far that is the only test that has come back positive. My MRI did initially show one brainstem lesion, it remained there for nearly three years, after more recent MRI,S it has now dissapeared and therefore I have a clean scan of the brain and spine. She said she is not entirely ruling it out, but I don't seem to follow the normal pattern of MS. I wasnt sure there was a pattern that fits all, however I do understand there are common threads that do apply in order to diagnose. I hope your lumbar puncture helps in being able to diagnose you. I also understand after being given treatment for the Lymes, you may be very reluctant to start with treatment they may offer you if it is MS.
Like you said to me, hang in there", and try to stay positive, im sure if they do want to offer treatment based on your results, this time they will get it right. Goood luck to you and will be thinking of you.....