Hello, new and semi-diagnosed having questions

[Jazzyfizzle]

Hello everyone, I am new to the forum. I have questions that I would love to ask. I will give a bit of history of my situation.
Approx. 4.5 years ago I was your average, mostly healthy person. I worked many hours at a landscape/nursery company and had two sons at that time. Took care of all the household chores, that type of thing.
I began having serious pain in my upper abdomen and went to the family doc. He basically brushed me off with no idea of what was going on and didn't seem concerned at all. I was in severe pain, so I phoned back (after friends suggestion) and asked if he could look at my gallbladder. The pain was the worst directly after eating. He did this and said it looked alright.

Shortly after I found out I was pregnant. Just a few more weeks into the pregnancy I became worse and worse. Trips to the ER, they told me I was just 'overdoing' it. I was couch-ridden so this certainly wasn't the case. My legs truly felt like I was dragging concrete blocks. There are many details, but it would be a very long post LOL, so I will cut to where I went into labor at 27 weeks. Still our hospital could not figure out what was happening, so I was sent to big city trauma hospital. My husband said they had some answers in about 30 minutes. I was in a Dka (went into a diabetic coma), my blood sugar was close to 1000. I had pancreatitis and gall bladder disease. I delivered the baby premature and slipped into the dka and woke at a later time in the Icu. My baby survived with 73 days in Nicu and is doing well now.
After I was moved down out of icu to risk maternity, I began having severe vision problems. They had stabilized my blood sugar. They would bring me a menu to read, as I tried to read across a line, my eyes would jerk back in the sentence, what a scary experience. This continued for days then subsided to some degree.

After coming home, things continued to go downhill.
Debilitating fatigue to this day, I can't express how severe it is
Terrible lymph node swelling and pain (L side only), severe joint pain
The legs are torture, such pain, stabbings, 'buzzing' (does that make sense?) shocking feelings, numbness, incorrect sensations (such as wet when actually not)
When I lift my arms over my head to curl my hair my arms go immediately numb
So much trouble swallowing that I have almost choked on pills
The bottoms of my feet are torture, walking on them is agony
Muscle spasms, 'charlie horses' in the legs, just terrible
Weakness, I cannot open or lift anything now
Mental function is not good, I get confused over things such as the checkbook now, I cannot remember people's names, I feel like my head is literally full of 'foam' or fog. Does that make sense?
I am running into walls, I know this sounds so wacky, I run into corners when I think I have made a clear distance around them! I dont' know how I can keep doing this.  

Here is what I have for medical -

My gall bladder was removed, I continued to have chronic intermittent pancreatitis
The pancreas also stopped doing it's digestive function, so I have to take meds to help digest my food
I became a Type 1 diabetic at age 36 with no family history at all of diabetes, I am now on an insulin pump


I was referred to a wonderful Neurologist who listened to my troubles right off and set out to try and help me. He has been a Godsend.

The brain Mri showed something, he really wasn't specific in telling me what he thought, and in retrospect I should have learned better and asked. He said that it looked as if I had several strokes during the Dka and showed on the Mri.
I have had 2 Emg's of the legs that show Neuropathy in both legs
I have shown 'brisk reflexes' ?
I have sky high Epstein Barr levels in the entire range, the Neuro put me on Anti-virals and they have since some down between 200-300 points and it has helped a deal with the fatigue. I am not sleeping all day and night now.

Recently I was at a disability hearing, which I thankfully won after all this time being off work. The government doctor told me, that in his mind I have MS.
He talked much more about my brain scans, and stated that I have a large amount of 'white matter', that my brain looks worse than a typical 70 year olds. The judge, admitting that she is not a doctor, said from her experience she agrees. They both suggested I have a fresh Mri done.
I am to see my Neurologist again the end of this month.
Could anyone give me their opinions on my situation? I am sorry for the length of post, so much has happened and I know I am forgetting to include so much.

Thanks so much

[Want to feel well!!!]

My neuro started me on Valtrex (he had me cut the 1gram pills in half) but I could not tolerate the side effects, so he put me on amantadine.

Also, my neuro practices with his father and is very compassionate.  His initials wouldn’t be B. B. would they? (I live in Ohio.)  

Wanna

[Jazzyfizzle]

Hi Wanna,

I am on  Valtrex 500 mg, 4 times a day. I would love to hear more about your situation. I feel like the orange zebra in the herd! lol  I hate to hear you are so ill but also happy to hear of someone else with a simliar situation.

Hugs!
Jazzy

[Jazzyfizzle]

Oh Quix, thank you so much for your thoughts on my situation. I am thankful I have found others here who understand what this fatigue is like to live with. I hate that everyone is suffering- but I feel so alone in all this. I find that if I can manage to do the dishes and laundry, I have managed to climb a mountain and it is a very good day.

I am definite that the lymph nodes are related to the Ebv, only my left side is effected, very strange. For quite a time after coming home I developed scary chest pain. The chest Cat scan shows several calcified lymph nodes, one is pretty large, I believe 3 cm? I have the report here somewhere. The armpit or neck, they were not as painful as they became later. This is on the L side of the chest also.
Last October my Neuro started me on Valtrex, 2 gr. daily, and after a few weeks the lymph nodes started to improve. The gram pills are huge, and I as much as I felt a ton of improvement with them, swallowing them was a frightening experience. A couple times I nearly choked to death, but got them back out. So this led me to sort of slack off taking them (bad I know) for fear of choking. Not long after I slacked off, the lymph nodes came back with a vengeance. Since then, my doctor changed the size of the pills and I take two of the smaller ones at a time.

The neurologist had my labs drawn for the Ebv last October, and also for many others such as CMv, and that typical lyme test. The Cmv show 'equiv.' and the lyme negative on those. The Ebv was very high. He ran them again in Feb. and the Ebv had come down a great deal, but was still highly positive. I am still on the Valtrex.
I know I am having a great deal of mental fog. I definitely have trouble with word recall. Just reading paragraphs on forums is a challenge. I find my head spinning and its an effort to try and absorb what people are saying.
Heat does not seem to affect me one or make any of my symptoms any worse or better. I can't recall if my brain Mri had contrast. Unfortunately the one thing I am allergic to is Iodine. They found this after my first test and now if I am to have contrast I have to take a large dose of benadryl and everyone seems a little jittery about doing it. I know the last one I had of the pancreas, I had contrast and everything went fine with taking the benadryl, I just ended up sleeping for hours afterward.

My Emg report reads - 'A sensory motor peripheral polyneuropathy was seen. Predominantly axon loss in type and moderate degree electrically. This has shown signs of progression since previous study of bilateral lower extremities.'
I am not sure if I had nerve conduction studies. What is the test like?

Thank you, thank you, thank you for your information. I am lost in a sea of few answers. For so long I wanted to have my old body back. I have realized that is not likely to happen and have accepted it finally. But I want to be as strong and active as I possibly can still.
My neurologist practices with his father, who is the predominant Neuro in our area. I know he is willing to think outside the box, thank goodness for me. I have read that most doctors wouldn't even be willing to prescribe the anti-virals. This is what makes me think, that if he is not certain about MS right now, then I am also not certain.
Do you feel that the strokes and/or Ebv could have caused the brain damage that I have? Could the strokes have accounted for the words moving on the page when I tried to read? This was approx. 2 days after waking from the coma. Is there any way to 'protect' my brain from any further damage, that you would know of? Other than what he is already trying?

My baby boy :)  he is nothing short of a miracle. He had the record stay in the Nicu there, they became like our second family. It was touch and go for a long time. He was actually born at 3.3 pounds. They said the diabetes had made him large for his gestation, and ironically, probably was what helped him survive. His inability to eat was our largest hurdle. I remember waking up in the Icu..they brought up a polaroid photo of him and taped it next to my bed, he was pitiful bless his beautiful heart.
My then family prac. felt he had developmental disabilites, but we could tell he was bright and just needed time.  Until about last summer he was still wearing 12-24 month size clothes, but has had a large growth spurt and is now wearing some 3-4 size clothing, yay! He was slow to crawl, walk, use the potty, all those things. Now his older brothers have taught him to play Guitar Hero with the best of them. LOL

Could you possibly list out what you would think the contenders are for my situation?  
All my gratitude,

Jazzy

[Want to feel well!!!]

Hi...welcome to our little corner of the world.

I was curious what antiviral you have been on.  I too have sky high EBV titers, and I am trying a second antiviral to try to bring them down, as the first one did not work.  

My neuro has ruled out MS, but I still have dizziness, extreme fatigue, and vertigo.  The MRI's of my neck and spine have revealed many disc issues which explain the weakness, numbness, and tingling in my limbs.

Sorry you are not feeling well.  I hope you get answers soon.

Wanna

[Quixotic1]

I'm back with the research part safely posted.  It sounds like you are in misery.  I'm so sorry to hear of that, but bigtime congratualtions on your NICU graduate.  Sometime maybe we can talk about their growth and development.

It sounds like you are still in the throes of  an active EBV infection.  That can definitely cause the severe, fatigue you describe.  Uhh......yes I (and many of us do) understand how crushing and insurmountable neurologic fatigue can be.  You have a tiny reserve of energy with which you can do a limited number of easy things, then it runs out and IT IS GONE.  Really gone.  There isn't a reserve that yhou can summon up if it's important.  Family and friends often do not recognize this.  You hear, "yeah, I know what it's like to be really tired."  This isn't tired - "dead" would be a better description.  The dead get as much done as I sometimes do.

Your fatigue, swollen lymph nodes, and ??fevers could well be due to the EBV.  The pains, numbness, cramping, muscle weakness (which has to be distinguished from general fatigue), the brain fog, memory problems (do you have problems with word recall?), and problems with running into walls are less easily explanable by EBV.

The comment about your MRI of the brain sounded like they were actually referriing to "white matter disease" or white matter lesions.  The white matter of the brain is the communication network of the brain and spine and we all should have a large amount of it, but it should be "normal."  In MS, and here I will be talking about your post in the con are context of MS, the lesions of demyelination are all in the white matter.  The compalints you have, numbness, pain, off senstions, weakness, brisk reflexes are all characteristic (but not specific for) MS.  So are the fatigue and the mental/thinking problems.  Have you noticed any problems with functioning in the heat?  Does a hot shower make you weak or bring on the other symptoms?

Was your MRI done also with injected contrast?  Have you had MRI's of the cervical spine and the thoracic spine?  If not, these should be done.  When they did you EMG's did they also do Nerve Conduction Studies?  These would have shown if the neuropathy was peripheral (outside the spine or brain) in the peripheral nerves.  If the neuropathy is peripheral, it is not a part of MS.

There are other neurlogic conditions your neurologist will probably be looking for.  With the history of  a viral infection and lots of brain lesions (it sounds like) they might look for something called Acute Disseminated EncephaloMyelitis (AEDM).  Generally, these people are far sicker than you sound.  Strokes occuring during severe DKA are well-known and must also be considered.

If the doctors are considering MS, even with the documented EBV, then they will want to do the repeat brain MRI, asnd the MRI's of the spine, possibley tests of  the sensory nerves called Evoked Potentials, possibly a spinal tap, and blood work to rule out other things that look like MS.  I'm thrilled you have an attnetive, caring neurologist.  Listen to him, ask him questions.  Often here on this forum we have people who have not been able to find a neuro that takes them seriously, so you'll hear us/me contradicting them or insulting them.  I have nothing but the highest respect for a bright, caring, conscientious neurlogist who is set on finding the diagnosis.

Is MS a possibility for you?  I would say it is one of the contenders, but you need more information.  

I hope this, too has been helpful, Quix

[Quixotic1]

Hi, I'm back.  Gee, I promised you  a post 2 days ago.  I am permanently in mentalpause, it seems.  I am a physician, but you should know that I was just a pediatrician and left practice 6 years ago.  I hang out here trying to help people make sense of what is happening to them and helping to make best use of the medical system to get whatever information and diagnosis they need.  I'd also like to mention that I practiced developmental pediatrics for 5 years, where a large part of my practice was in following up with Very Low Birth Weight premies - I followed the ones whose birth weights were less than 2000gms.  (less than 2.2 pounds) after they graduated from the NICU.  I had three whose birth weights were less than 1 pound.

When I saw your post the first day I just had to do some reading on a topic I've wanted to look at, EBV and MS.  The onset of Type I diabetes makes it that much more interesting as T1DM has been felt to have a viral trigger for a long time.  So, I really wasn't ignoring you.  I found a whole bunch of articles and did a hefty amount of reading so I'd have something relevant to say.  Because I have chronic vertigo, I only have a limited amount of reading and writing in me per day.

It's impossible online, to diagnose your problems, but I will talk about them in the "context" of MS, since you're here and that's mostly what I know.  It certainly sounds like you become ill, probably with EBV right about the same time you became pregnant.  Those first abdominal pains were likely acute pancreatitis, which is felt as a horrendous boring, gnawing, stabbing pain in the mid-upper abdomen.  I wouldn't  be surprised if you had a viral hepaptitis (very common with EBV and can occur without jaundice) and gall bladder disease developing at the same time.  Certainly your entire pancreas completely burned out!

Researcher believe that something, likely a viral infection, often triggers an autoimmune attack on the pancreas with it's insulin producing cells, thus damaging or destroying them.  This causes the body to lose it's ability to make insulin and causes Types I Diabetes (which is very different from the usual adult-onset Type II Diabetes).  Epstein-Barr Virus (EBV) has long been suspected of being one of the viruses that cause this.  

Also, a viral trigger has long been suspected of triggering Multiple Sclerosis in a similar way.  The two main suspects are also two viruses that everyone has been exposed to and about 95% of the population has antibodies against.  These two are HHV-6 (Human Herpes Virus #6) which is responsible for the young, childhood illness called Roseola, and EBV which causes mononucleosis in older kids, teens and young adults.  In young children EBV often causes a nonspecific, unremarkable febrile illness.  By young adulthood 95-96% of all Americans have antibodies against EBV.

It has been hard to  prove this link between EBV and MS because of the fact that most people have had the infection already, but some things are known.  EBV has a powerful ability to disrupt the immune system.  It is well associated with nervous system effects like meningitis.  It is also known for causing Guillain-Barre Syndrome, which is an acute disorder of paralysis from demyelination of the peripheral nerve roots.  In multiple studies the link between MS and EBV has been shown to be possibly this:  People who have much higher antibody levels against EBV have a higher rate of MS than people with lower (usual level) antibody levels after the infection has passed.  Also, in some studies 100% of the MS group had antibodies against EBV.  In fact, the group with the highest levels is 30 times more likely to develop MS!!  It appears that those people whose immune systems mount a huge response to EBV  are the ones at the highest risk for the automimmune attack on the nerves in the CNS which is MS.

Now, pregnancy also has a remarkable effect on the woman's immune system.  It must be relatively suppressed in order to keep from rejecting the baby (half of whose tissue is from the father and has different tissue types.)  Many auotimmune diseases are worse during pregnancy, but MS (already established MS) is often vastly better.  This is hypothesized to be partially from the high levels of estrogen.  MS tends to appear for the first time or relapse in the first six months after delivery, when the immune system comes back on line.

So, Jazzy, you had an enormous upheaval of immune system disturbance when you combine the EBV infection (or reactivation) with the pregnancy, and then factor in the immune suppression of uncontrolled diabetes, DKA and coma.  Wow!  

There is one more point that is recently coming to light.  It used to be considered (for reasons I won't go into here) that people with Type I Diabetes didn't get MS.  There have been a couple studies showing exactly the opposite!!  A woman with T1DM may have close to 100 times higher risk for developing Multiple Sclerosis.  LOL, none of the studies talked about getting everyting at once!!  So, you got the triple whammy, it seems!  The most recent study I found, from 2003, stated the "average" length of time from infection with EBV to developing MS was 4 years.

Of course, I could be way off base here, but everywhere I looked, I found connections between EBV, T1DM and MS.  It got more and more fascinating.  The data is all indirect.  None of it proves the link, but the associations are there and they keep showing up.  I'm going to post this and then in the next post, talk about your specific symptoms and where you might want to go from here or ask your docs about.  My cats are dashing around and up and over and if one of them lands on the refresh or ENTER key, I am doomed.

I hope this has been worth waiting for.  Quix