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

[tory2457]

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

[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

[Jazzyfizzle]

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

[T.O.fire]

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.

[tory2457]

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

[Quixotic1]

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