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251222 tn?1270936117

Hello, new and semi-diagnosed having questions

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

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Avatar universal
Google E.B.V. causes  HISTIOCYTOSIS!!!!Have EBV IGG VCA's,etc. tested. biopcy lymph nodes,check lymphosites&histiocyes.. careful most sites H.A.A. is good but most sites give vague&outdated material!White matter-Lesions!I read alot of PUB MED Studys..Good Luck!Ive been Dx&cant get a Good Dr in Ohio.
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Avatar universal
I meant ER doctor...oops!
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Avatar universal
Valtrex went right though me!  It would pass though me quite quickly so it never had time to work.  How weird is it that we are seeing the same neuro!

I went to the F-T emergency room this past summer and I swear there is one EF doctor who shouldn't be allowed to examine on a dog!!!  Is that the hospital you ae referring to?

Wanna


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251222 tn?1270936117
Oh Wanna,  stopping back in to add - if you would like to know which doctors and hospital in our area that were not capable of diagnosing diabetes, pancreatitis and gall stones.. and instead sent a me home with prevacid.. I would be more than happy to email that to you.

Jazzy
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251222 tn?1270936117
Woops I was so excited LOL  that I forgot to add that thank goodness I have had no side effects from the Valtrex. He tried the Amantadine for me also but it did nothing to help. What side effects are you getting from the Valtrex?

Jazzy
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251222 tn?1270936117
OH my goodness yes they are Wanna! You are close to me!!

Jazzy
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Avatar universal
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
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251222 tn?1270936117
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
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251222 tn?1270936117
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

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Avatar universal
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
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147426 tn?1317265632
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
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147426 tn?1317265632
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
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Avatar universal
Maybe you confused me with someone else? I did have a bit of foot drop, but no bladder issues, thankfully. Foggy head, optic neuritis, loss of coordination, TN, L'Hermittes; but most all resolved and I regained most everything over the years..I'm a lucky gal.

As for the Lyme test done at a hospital? All lyme tests are unreliable, but when tests are done at commerical labs using the ELISA it's really an unreliable test! another words people with a bulls-eye rash are known to test negative! oh my

I read about people on lymenet that have your same symptoms with regard to your legs...the burning,shooting pain, itching etc.

There are only a few labs in the US that specialize in Tick-Borne Illness's: these labs test for ALL the bands, the ELISA doesn't.
igenex.com is the lab most docs use....
even when tested through IgeneX having a positive test result based on the CDC criteria is almost impossible! I tested negative....but I have significant lyme bands that were either postive or IND (indeterminate).

You might consider posting your story on lymenet.org,,,,ask about where to get tested,,,It's so frustrating that lyme isn't "strickly" a clinical diagnosis! Testing most times with a doctor who is not educated in Lyme gets a negative test result and says "no lyme here"....yet the sickest of us test negative. Smart little bacteria , it hides and replicates so well our immune system doesn't recognize it..

I needed to take Clindamycin for a root canal; it made my foot tingle....along with NAC that made me stuffy. It led me to begin the arduous task of reading and becoming my own advocate.
I do wish you a road to recovery! and wish the best for you.

Hope this helps,
tory
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230948 tn?1235844329
uk2
Hi jazzy

Welcome on board your in the best place there are some fantasitic people on here with lots of knowledge. i have no medical knowledge only of research of my own but we are all here to listen i hope and pray you get answers soon sure sounds like you have a great consultant and we cant all say that on here!!
Reading your time line on some of your sx was so near to alot of my sx but i have not been through gall bladder or other thingsyou have.

I too am like you i have to have a answer to everything but im starting to feel maybe there is not but i pray answers are out there.

i cant advise on if this is or if this is not but i hope the next mri will help. living in limbo land is not fun and very loanly at times.

keep postive hun and god bless
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251222 tn?1270936117
Thank you everyone! The baby was our third son. :)  He was very small for a long time, and slow crawl, walk, those types of things. He is finally growing and although still small for his age, he has caught up a good deal.
That is very interesting about the Lyme Tory! I know I have had a couple Lyme tests in all my bloodwork that has been done so far, but from what I am reading, the hospital Lyme tests are really not accurate? Is that correct?

Parts of my leg situation are definitely the neuropathy, the burning, shooting pain, aching, itching. I have alot of gaint issues also that he is not sure is the neuropathy.
I am not sure what to think about it all. I am also a 'figure things out' person, like I read other's are. It drives me crazy not to know what I am dealing with. I am to the point also where I want to know for sure, it would better than this limbo. Then I could get down to dealing with it. I read on one post about naming your enemy. Boy that is it for sure.

I am missing some of the components that I see alot of you have (at least so far).. I do not have the foot drop. I really dont' have any bladder issues. A few during the prenancy, but I believe that was from it being my third child and things stretched out of shape a bit. lol

At this point, I dont' know who to believe. Maybe the next Mri will show something else (dread). I want it to, and I dont' want it to. Know what I mean?

I dont' know if the Dka 'ruined' my immune system, or shocked it, I just dont' know. :(

Jazzy
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Avatar universal
Welcome, I'm new here also, there seems to be alot of shoulders to lean on. We are all in this together in some degree.
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Avatar universal
Hi, and welcome to this forum..

I'm the odd man out when answering someone looking for help! I have MS and Lyme Disease. Your symptoms sound like lyme symptoms and there are quite a few..

imo non medical opinion...I will suggest that you "seriously" consider finding a doctor who is educated in Tick-Borne Illness's. We call them Lyme Literate Doctors.
for instance: the bottoms of your feet hurting ? sounds like Babesia and Bartonella (co-infections to the lyme bacteria) I've had this for years without knowing what it could be.
your brain fog? a very very common sign of lyme
The lyme bacteria goes into the CNS--it causes lesions in the brain and spinal cord
then there's the classic symptoms of stabbing pain- I have Trigeminal Neuralgia- buzzing, charlie horses,etc
Walking into walls is a common symptom too: tons of lymies that could share that one problem with you and actually you have many symptoms so many others have
forgetfullness, yes very common..
btw,No one with lyme would think you're "crazy" or it's all in your head.

Here's a list of Lyme symptoms:

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol


and here's what I can point you to
ilads.org
lymenet.org

Lyme is the great imitator...
If you are considering this to be MS, find a good neurologist
If you would consider looking at Lyme find a good Lyme Literate Doctor!

wishing you good health,
tory
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147426 tn?1317265632
Hi, Welcome to our haven of people in diagnostic Limbo!  I would love to offer you some thoughts and advice and will do so tonight.  Just a teaser recent research is showing a connection between adult onset Type I diabetes and MS.  More to follow.....Quix    
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Avatar universal
WELCOME!!!! YOU SURE ARE A STRONG PERSON. You have been through so much. Most people couldn't handle it. CONGRATS ON THE BABY. GLAD TO HEAR IT SURVIVED. Did you have a boy or girl?

It is very frustrating waiting for answers. I waited a month wondering about MS and  2 months to find out I don't have a  brain tumor. I would suggest writting things down. Taking your concerns to your dr. Bring up any questions you have or questions your other dr brought up, but couldn't answer. Not all neuros are experts on MS. Some specialize in it and some have little or no knowledge. Getting more than one opinion is a very good idea.

My firs neuro diagnosed me with MS, but couldn't tell me much about it and didn't seem to want to talk to me about MS. I don' t think he is all that knowledgeable on it. So I called the MS Society and got the name of an MS specialist in my area. I got to see my MRI's and she explained them to me. If you want to see your MRI's just ask your dr. Have them explain it to you.

My current neuro, has MS too. I found out from someone in an MS support group that I called. I never ask her about her MS, because she didn't tell me she has it, so figured she diidn't want me to know. But it is nice to have someone, who knows what they are talking about. So keep pushing for answeres and you will eventually find  them. They say patience is a virtue, but when it comes to waiting for results, I know everyone wants to know NOW!!! So hang in there. It sounds like you have  great support from your husband. That always helps.

Take care and come back and visit us, when you can. No messages are to long, when you have questions and problems.    Karina
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Avatar universal
I'm glad that dr suggested MS to you and that you neuro is going to look into it. I thought I read MS goes into remission if you get pregnant?? Lucky for me I don't ever want to get pregnant. Never have..  Karina
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251222 tn?1270936117
Hello everyone and thank you so much! I feel comfort in being among those who understand what I am living through. :)  

Angela, did they tell you that you were diagnosed after the Mri?  I am glad to read so much information in all the posts.
I love your idea Momzilla on how you deal with your visits. Thank you for the compliment on my name! It is the name of one my dogs. We sometimes call her Miss Fizzle. lol
I have taken to writing everything down for my visits in short sections, and it seems to help. This way I do not forget half of what I wante d to say. The doctors seem to like it.

Would you take the other doctors diagnosis as just that, a diagnosis? Or not until my regular Neuro diagnoses it, if he does?
I dont' want to seem like I am questioning his findings, since he has been such a help to me. I would still be living on the sofa if it was not for him. He might already have the other doctor's thoughts on paper possibly, that would have been sent to him? I see him on the 29th.

I forgot to add earlier that I have what I call 'many day headaches'. They are not super severe but they last for days and days. The are very resistant to anything like tylenol. Once they put me on some type of steroids for a week long headache I was having, and crazy me did not ask what I was given. My blood sugar went nuts, very high. So those are out of the question for any treatment.

Thank you for the warm welcome

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220917 tn?1309784481
Hi, Jazzyfizzle -I love your name!

Welcome to the forum.  I bet your just happy to be anywhere at this point!  What an ordeal!  I am so sorry that you had to go through all that, but am glad to hear your baby is fine.  Did you have another son or a daughter?

You certainly have a LOT going on, and you have had a lot of testing done with some concrete results.  The Epstein-Barr  would certainly account for your fatigue. And I believe you about it being debilitating.   You may have more going on that's contributing to it.  You have been diagnosed with neuropathy.   That would make sense with your diabetes.  Was an NCV done at the same time, do you know?  

It's quite possible and very probable for you to be having many conditions or disorders/diseases going on at once.  I've no knowledge of the gallbladder thing, sorry.  You have too many sensory symptoms happening for it to be just peripheral, like diabetic neuropathy in my opinion.  

The nystagmus (words jumping on the menu) , the strange sensations (feelings of 'wetness'), the running into walls, these are not part of neuropathy.    This would be more indicative of MS as apparently your MRI has shown.  I don't know much about strokes, but I doubt these are symptoms of stroke.  Yea, judge!

I know you have said your neurologist is kind and attentive and is a Godsend.  Wonderful.  I'm glad you have a good feeling about him.  I don't doubt he wants to get to the bottom of your troubles.  You're also right to think now that at your next visit you have every right to be assertive and ask, "What did my MRI shoe EXACTLY?  Why EXACTLY do you think I had strokes during the Dka?"  

I have cognitive problems.  When I am under stress, even the slightest bit, as when I go to the doctor's office for the first time, my cognitive problems are magnified.  I am a bumbling idiot.  I know this.  So, I bring along someone who understands this about me as an ally.  Usually my husband.  He knows what the objectives are for the visit, we go over them when we get in the car.  I say, "Honey, I really need for you to help me make this guy understand how weak my legs have gotten so fast.  And how hard it is for me to remember even having conversations."  And he keeps that in mind and adds his own two cents about his own concerns.  It makes all the difference.

We have lots more people on this forum who will no doubt peek in to say 'hello' who've been diagnosed with MS.  I have not.  They can help you a lot more than I probably.  But you just have so many symptoms of MS to be written off by your neuro as anything else.  And you have objective evidence on your MRI.  Please don't feel timid in asking your neuro just exact;y what that evidence is.  What is he waiting for?

And I think you should have another fresh MRI.  Has it been ordered?  Smart judge!  

Feel well and keep us posted!

Momzilla*
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230625 tn?1216761064
Welcome to the forum!  I'm sorry you're going through so much uncertainty with your health and have been through so much!

I'm new to the forum also, and still learning from the experts here too.  

It sounds like you are now on your way to getting answers.  The new MRI will hopefully shed some light on what's happening to you.

I'm wondering if the Diabetes could be contributing to your problems with your legs, thus your abnormal EMG's and "neuropathy" diagnosis?  

I also noticed you mentioned your lymph node swelling.    I don't know if it's related or not, but just wanted to say that I have been experiencing sore lymph nodes as well.  My neuro told me that's "not MS", but no one has been able to give me an explanation for it.  Just another confusing symptom.

Welcome again and I'm sure there will be others that can give you more insight on what you are going through!

Take care!  Pat :)
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Avatar universal
Welcome to the forum.  I'm sorry to hear your story.  My problems also started around pregnancy, though mine were after delivery.  It's a hard journey, and at least you are on the right track. You have doctors that are looking into it.  I would bring up what the government doctor said to the new neurologist. Bring as much detail about it as possible, he woudl be able to explain to you what course of action you might be able to go with.  I'm not sure if that will help. but if you just ask for some understanding about what the guy was saying, maybe you will get an answer.

My ob/gyn (third one) was the first one to mention MS.  I brought it up with my neurologist by asking why was he suggesting MS, and we talked about it, and began testing to determine if MS was a possibility, because my neurologist wasn't even thinking in that direction until the ob/gyn said something.  Now I'm waiting for my appointment this afternoon to have my brain MRIs looked at.  I wasn't even going to get one if I didn't mention it.  Good luck
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