How can something that's ruining my life not have a name???

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby lyndacarol » Tue May 03, 2011 6:08 pm

ToniH –As you will soon learn, there are many hypotheses for the cause of MS. Each of us has our own ideas.

As I look at your situation, my first suggestion would be "go back to square one" and assemble a medical team that you trust and who is willing to work with you. Start with a good GP or internist (perhaps a friend, neighbor, coworker, minister, or local MS society can recommend someone) who will coordinate your investigations; start your own file with copies of all your test results; as LR1234 suggested, consider additional blood tests – including tests for cortisol level, ALL thyroid hormone levels, and "fasting serum insulin test" (NOT to be confused with the glucose test; these are two different substances).

Your doctors have prescribed some strong medications; perhaps you have had some interactions between them, or perhaps you have developed allergies or sensitivities to them. Your lead physician may even recommend that you stop these medications and start over.

In the meantime, I agree with the suggestion that you look into diets that people have found useful with MS; e.g., www.TerryWahls.org

Best wishes to you.
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Postby ToniH » Wed May 04, 2011 9:41 am

I appreciate the information about Lyme. It was actually one of the first things I came across once I started researching my own CBC results and trying to figure out what it was that the doctors were missing. And whether it pans out or not, whether you're right about the money issue involving treating Lyme or not, I know that there are many people who are misdiagnosed with MS that don't have MS at all. But, even though I know that to be true, it sort of astounds me--I'm begging for a diagnosis, I'd even take a misdiagnosis, anything to make me feel a little less alone and hopeless.

I want to elaborate on the rash, or petechiae. That symptom made me feel that whatever I have is either blood-born or is causing some disruption in my blood. The dermatologist was right when she said the lab thought it looked like Schamberg's Disease. It does. The problem is that it doesn't behave like Schamberg's. It reacted to the steroids and antiobiotics, almost like it took advantage of my suppressed immune system, and multiplied, spread all over my legs and up my back within a day. I found a picture that resembles what my rash looked like. I tried to take pictures of my own when it happened, especially after the derm seemed so confused, but I am so pale they would not turn out. I guess we know it's not skin cancer, huh? :) Sorry, sometimes I have to laugh to keep from crying.

Image

Obviously that's not my leg, but it's a pretty good resemblance to what I had. They were flat, and up close resembled pinpricks, almost like a bruise. They were red, did not blanche, and after taking the steroids for a few days they seemed to turn yellow or brown like they were healing and fading. Of course, that didn't last long.

Another thing that makes me think it's something reactive in my blood is that those patches would appear instaneously at a spot where I would be itching for no reason. My knee would itch, I'd scratch it, and a few moments later those spots would appear. It wasn't a result of the scratching, nor was it a result of pressure I was putting on my skin.

Now I still get the itching, but the patches are much less frequent. The original spot on my right knee is still there, the little bastard. And I do still get places on my body where it looks like my blood is seeping up to just below the skin, tiny red pinpricks, just not neccesarily in patches. But they have never been as bad as they were when they kept putting me on the steoids and antibiotics for the various viral infections they thought I had.

At this point, I'm not sure how much information is too much or what symptoms aren't really related, but for the sake of finding out what's wrong I reach for straws. One of those straws relates to my many bouts of illness in my childhood.

I remember being hospitalized and having to live on 7-Up off and on for weeks because of viral gastroenteritis. My mother said the infection was in my throat as well. I usually had three episodes of what mimicked strep throat every year before they finally took out my tonsils. Maybe they should have just left the damn things alone, since swallowing problems cropped up a few years later. (And just for amusement, for no reason whatsoever I typed "same" instead of "damn" in that sentence and had to correct it. Why do I write or type words that are not the words my brain wants to write or type? Who knows, but it makes my e-mails interesting). Now I don't have any reason to believe that childhood illness is relevant, except that I know some childhood illnesses are prevalent in people that later get diagnosed with MS. EPV, for example, it lives dormant in the body of someone infected for the rest of their life.

Like I said, I'm trying to get all of my records together, all MRI reports, the problem is finding the best person to take them to. I'm anxious about going to doctors now, because I feel like the more tests they do, the longer my list of failed attempts to get diagnosed will become. At some point, they are going to tell me that they either don't know what's wrong with and that I'll have to live with it, they will prescribe me drugs to treat some symptoms while my brain continues to disintegrate, or they will diagnose me with some BS made up "this is really just a descriptive name because we don't know what causes it or treats it" thing like Schamberg's Disease.

For a while I was most concerned about the pulsatile tinnitus, because everything I read indicated that it was almost always vascular if no inner-ear problems were detected, and I thought I would drop dead of a stroke before they could find the cause. Somedays a stroke doesn't sound so bad. I know that's a terrible thing to say, but my entire life I've been the smart girl, the braniac, the creative one, loved book, loved to write, wanted to be a teacher or a writer (before my guidance counselor told me print was dead and to give it up). Now I have moments where I don't recognize the entrance to my subdivision, it looks sompletely remodeled (it's not), I had a moment where I didn't recognize myself in the mirror, I was shocked to see me. And yes, I have honestly forgotten how old I am at certain times.

So do I take all of my medical history to a neurologist, and ask that they do a MRI following the MRI protocol? Do I see someone who specializes in infectious diseases? For some reason I believe my PCP tested for Lyme, he tends to be more conservative and less pill-happy than some of my other doctors, and I believe he did it after the rash, though he said it was not a Lyme rash.
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Postby ToniH » Wed May 04, 2011 9:46 am

And while I'm thinking about it, I guess I should mentiontwo incidents I had where I completely lost my hearing. The first time it happened, I chalked it up to a reaction to shocking pain. The second time I was dicing vegetables for dinner and I just leaned over my counter for about 5 seconds, and realized I couldn't hear anything and I felt like I was going to literally fall out in the floor.
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Postby Cece » Wed May 04, 2011 2:50 pm

ToniH wrote:
cheerleader wrote:My husband had pulsatile tinnitus, due to a small dural venous sinus which was collapsed and a malformed jugular vein. He heard his blood flowing like a whoosh with each heartbeat when he lay down.
See if you can get a scan of your veins, not arteries...magnetic resonance venography.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1656639/
look into CCSVI www.ccsvi.org

take care--
cheer


From what they told me when I tried to have the MRA, any scan they try to do of my veins would be distorted because of the braces.
The tinnitus is definitely the second worse symptom to the cognition problems. It's so loud, and it's all the time. No matter what position I'm in, no matter what I'm doing, no matter what my blood pressure. It almost sounds like wind blowing across my ear drum, but it's definitely pulsatile.

You can get a doppler ultrasound of your internal jugular veins. These veins pass right by the ear and are sometimes responsible for the sort of tinnitus that the doctor can hear too (as opposed to the kind I had, which only I could hear.) If the doppler ultrasound shows 2 or more Zamboni criteria, you would be diagnosed with CCSVI and have the option of having it cleared with an outpatient venoplasty procedure.

I had many overlapping symptoms from what you've described but nothing like that rash. My diagnoses ended up being MS and CCSVI. I wish you well in finding what is going on with you.
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Postby ToniH » Wed May 04, 2011 3:30 pm

Cece wrote:
ToniH wrote:
cheerleader wrote:My husband had pulsatile tinnitus, due to a small dural venous sinus which was collapsed and a malformed jugular vein. He heard his blood flowing like a whoosh with each heartbeat when he lay down.
See if you can get a scan of your veins, not arteries...magnetic resonance venography.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1656639/
look into CCSVI www.ccsvi.org

take care--
cheer


From what they told me when I tried to have the MRA, any scan they try to do of my veins would be distorted because of the braces.
The tinnitus is definitely the second worse symptom to the cognition problems. It's so loud, and it's all the time. No matter what position I'm in, no matter what I'm doing, no matter what my blood pressure. It almost sounds like wind blowing across my ear drum, but it's definitely pulsatile.

You can get a doppler ultrasound of your internal jugular veins. These veins pass right by the ear and are sometimes responsible for the sort of tinnitus that the doctor can hear too (as opposed to the kind I had, which only I could hear.) If the doppler ultrasound shows 2 or more Zamboni criteria, you would be diagnosed with CCSVI and have the option of having it cleared with an outpatient venoplasty procedure.

I had many overlapping symptoms from what you've described but nothing like that rash. My diagnoses ended up being MS and CCSVI. I wish you well in finding what is going on with you.


I had the doppler ultrasound of both arteries done, everything was normal. That's especially bothersome since the ENT found nothing wrong on his end.

I did, however, find out something new this afternoon. I called the place where I had the MRI and requested the CD and report. I also asked them why the radiologist submitted something to BCBS that said Metabolic Brain Disease. They told me that they used the diagnosis codes that came over with my referral... from the neurologist! He gave them three diagnostic codes, for dizziness & giddiness (ha on the giddy part), skin disturbance, and metabolic encephelopathy. Yes, the neurologist who treated me like I was making everything up, gave them a diagnosis code for that. Of course, it's an umbrella-disease where it really just describes all sorts of different neurological problems, but there are only two types of encephelopathy that I found that are considered metabolic--toxic-metabolic enceph, and MELAS, which stands for Mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke syndrome . How's that for a pretentious name? I am telling myself that he was probably just trying to pull something out of his hat and had nothing else more vague to diagnose me with. MELAS, especially, would be worse than MS. I kept seeing the words "progressive and fatal" everywhere, so I ignored that.

I was just so mad that of all the times I've been to see him, begging for anything, any ideas, something to make me feel the tiniest bit hopeful, I was made to feel like I was a nut job. Meanwhile, he's telling my insurance company that's what I have.
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Postby bartman » Wed May 04, 2011 5:35 pm

ToniH,
It's not necessarily Lyme, it's more the Bartonella thats the problem. Bartonella is a vascular disease and the red pin point dot rash can be bartonella. I'm not a doctor but what is the purpose of doing steroids along with antibiotics? If you have an infection, it doesn't make sense to do steroids they make an infection worse. With Lyme and Bartonella and other TBD's it's often the reaction you get on the antibiotics alone that helps the doctor make a diagnosis because the tests are unreliable. It's as if your killing the infection and invigorating the infection at the same time causing you to in a sense be even, canceling each other out. 2 weeks, 4 weeks of antibiotics is nothing, you may need a year (or more) of antibiotics and it may take 6 months before you start feeling better. There is no place for steroids in the treatment for these infections. It is only necessary in life saving circumstances and then make sure to always take an antibiotic with them. Steroids are bad. It was the steroids that made my relative so so sick that led me to the correct diagnosis.
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Postby ToniH » Wed May 04, 2011 6:30 pm

They didn't give me steroids and antibiotics for an infection. They found no signs of infection, really. My CBC said my white cells were at 16,000 at one point, but that was it. So they told me I must have a virus. Before that they told me I must have the flu. And before that it was walking pneumonia. They never actually found any signs of anything definite, it was just like they considered everything viral if there was no easier, more obvious answer. I was on antiobiotics first, for about two weeks. Then I had the weird reaction at weird, where I broke out in hives and my BP dropped. They gave me oral steroids for the hives. The patches seemed to fade a little, but then they came back with a vengeance 2 days after I finished that first round. They gave me another two weeks worth of oral steroids. After that, when I still had them, the dermatologist biopsied one of the places on my leg that she had told me was eczema. The lab couldn't tell anything from the biopsy except that it "looked" like Schamberg's.

I didn't question what they were giving me, because I was scared and I didn't have many options. But after that second reound of steroids I decided to do some research. In the meantime, I told my mother all of my symptoms and showed her the patches, and she said I needed to go have a workup done to be tested for MS and Lupus. That's when I went back to that crackerjack neurologist who had "treated" me for my migraines and hand problems. I went in and specifically told him that I wanted him to rule out MS. Why he didn't even do an MS-protocol MRI I don't know, he didn't even order any contrast. Instead he apparently diagnosed me with metabolic encephalopathy, and sent me to an ENT to have the "vertigo" and tinnitus checked out.

I will research Bartonella. I'm not sure what it is. Thank you for all the info!
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Postby bartman » Wed May 04, 2011 6:46 pm

Where do you live? I would suggest finding an LLMD even if you need to travel to see one. There aren't that many out there. Think of it this way, your mom suggested you get examined for MS or Lupus and you have but still no diagnosis of either. Wouldn't it be logical that it could be something that mimic both of those? Read Dr. Burrascano's guidelines to start. Just google it but don't stop there keep reading and searching. It takes a good doctor knowledgeable about this stuff to get better.
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Postby ToniH » Wed May 04, 2011 6:59 pm

Well, certainly that would be logical, except I haven't really been tested for either fully. Didn't have the correct MRI, only had one ANA (it can be negative even in patients with diagnosis unless checked during flare-ups).
I read abourt Bartonella, and it didn't seem to fit me. I've had the same symptoms for over five years now, with the neurological progressing at an alarming rate. To me, if I had bartonella, I would probably have more than one of those symptoms at this point. I'll do a little more digging around, but there are several other things that fit better. And from what I read about the Bartonella, there's not really any definitive test for it, and it can be resistant to antiobiotics or steroids. Not to mention, none of the most likely strains produce my symptoms, really. Not without other symptoms soon after contraction. No fever, no nausea, no striped rash. I hate cats and I don't go outside after dark without mosquito repellant because I scar easily and don't want bug bites. It seems unlikely. I won't say it's impossible, but it's improbable.
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Postby jimmylegs » Wed May 04, 2011 7:28 pm

hi TH welcome to TIMS :)

i am just going to jump right in - re: "I've had all vitamin levels checked, everything was OK"

can you advise what you mean by 'all' and what the results were specifically, with units?


also, can you PM or post results for these:

Vitamin B12 Blood Test 11/3/2010
Folic Acid Level 11/3/2010
Iron Level 10/29/2010
Ferritin Blood Level, Iron Test 10/29/2010
Complete Blood Count with Differential 10/29/2010

let me know :)

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Postby Filmmaker » Fri May 06, 2011 7:24 pm

ToniH, I think you should alos definitely check into benign intracranial hypertension... it can cause many of the symptoms you listed, maybe ask your neuro for Diamox and see if it helps....
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Postby ToniH » Mon May 09, 2011 12:03 pm

I'll be getting copies of all blood test results tomorrow from my PCP. I'm still so angry about the neurologist throwing around the diagnosis of metabolic encephalopathy, though there's no basis for that at all. On top of that, I think I pulled a muscle in my back, so now breathing and moving my neck hurts. No idea how that happened, unless I did it while cleaning.

I've started myself on sublingual B12, to see if it would boost my energy. I'm taking a dose that claims to give me 20,000% of my recommended daily value. I don't feel it. If 70mg of amphatemines won't do it, I don't know what will.

jimmylegs wrote:hi TH welcome to TIMS :)

i am just going to jump right in - re: "I've had all vitamin levels checked, everything was OK"

can you advise what you mean by 'all' and what the results were specifically, with units?


also, can you PM or post results for these:

Vitamin B12 Blood Test 11/3/2010
Folic Acid Level 11/3/2010
Iron Level 10/29/2010
Ferritin Blood Level, Iron Test 10/29/2010
Complete Blood Count with Differential 10/29/2010

let me know :)

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Postby ToniH » Mon May 09, 2011 12:20 pm

I remember looking into this when the pulsatile tinnitus started in the left ear, since it never went away and the dopler showed no abnormalities. Sometimes I'll find myself in a situation where I feel like my blood pressure is high - red face, feel hot, feel faint, but my blood pressure rarely gets over 106/74. I remember wondering if the blood pressure was high in my head, so to speak. The only thing I wonder about is the frequency of my headaches. They were the first symptom I ever had, and they were constant. I'd have them for a year, and they would disappear for a year. They'd come back, and disappear. I think that's why the neurologist doesn't take me seriously. He tried so many different meds to cure my headaches, and he was aggravated when I told him they just went away. They've been gone for a while now. Occasionally I get one, but they may be a year apart. Would I still be experiencing headaches in the presence of the other symptoms?

Another thing that occured to me... the neurologist at the headache clinic that I first saw when I was 16 or so told me that he was surprised I had never been in any sort of accident, because my axis and atlas appeared to be off kilter. It's shifted somehow, and though it's not noticeable when you review my x-rays headon, it's quite noticeable when you look at me from the side. My chiropractor brought this up to me again after taking some x-rays. He explained that they look like they may be crushing my brain stem, and that they could be causing some of the limb problems though it's unlikely it;s the cause for the memory loss and speech problems. The neurologist, on the other hand, told me that he looked at my MRI and saw no indication of any problem like that (although he neglected to mention all of the cervical problems the radiologist did notice, like the bulging and degeneration). I was so confused. But I mentioned it again to my chiropractor last week and his answer was so simple: the MRI is conducted when I'm laying down. Abnormalities in my axis and atlas would neccesarily be different laying than standing. WHY DIDN'T THAT OCCUR TO THE NEUROLOGIST? I want to believe that I'm only a victim of a bad neurologist, and that going to a new doctor could fix me, but I've had a team of doctors... I can't help thinking that all of these things put together should jump out to any one of them. There's nothing more frustrating than adding yet another test with normal results to the growing list of procedures I've had.

I'm terrified of needles, but I suppose a lumbar puncture is in order.

Filmmaker wrote:ToniH, I think you should alos definitely check into benign intracranial hypertension... it can cause many of the symptoms you listed, maybe ask your neuro for Diamox and see if it helps....
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Postby jimmylegs » Mon May 09, 2011 4:38 pm

hiya, k i'll check back for an update. there are lots of things that could be out of whack contributing to low energy so keep up the b12 but it's not the be all and end all. also FYI by TIMS anecdotal xp, backed up by research on b12 and circadian rhythms, too much b12 in the morning will screw up your night's sleep.
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Postby rainer » Mon May 09, 2011 9:24 pm

There are a hundred diagnosis you can chase. Unfortunately neurology is very much in the stone age compared to other fields of medicine. Especially frustrating is that which they cannot diagnose, they diagnose as nothing. So it follows that if your nothing gets worse it is still nothing, kind of like multiplying by zero. Focus on one or two symptoms and find a doctor to objectively track them.
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