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251222 tn?1270939717

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

26 Responses
246236 tn?1275482502
Hi Jazzy, welcome to the forum.  I'm new to this whole thing too.  Just had an MRI done 6 days ago that showed a total of 4 lesions (3 in my brain, 1 in my cervical).  Unfortunately, I don't have the answers you're looking for, but you came to the right place to get answers and support.  I just wanted to welcome you and tell you good luck on this journey.  It's a frustrating one, and one that needs a lot of support.  
215385 tn?1201806501
Hi Jazzy, I'm pretty new the forum too and still learning so much from the 'experts' on here, the advice has been so useful, as has the support.  Like Anegla said I am to unable to offer the answers you are looking for but I know others on here will, so sit tight and wait fo the reponses to come in. I just wanted to say heloo and welcome you to the forum.

Stay in touch

Em
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
230625 tn?1216764664
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 :)
220917 tn?1309788081
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*
251222 tn?1270939717
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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