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710547 tn?1295446030

MS symptoms - Out of Hospital

Well, the symptoms I was having prior to my last post about the MRI news and the Rasmussen's Encephalitis dx probability and what happened from there.  The day after I posted, I got a call from my doctor's ofc which said my hemoglobin was 7.4 and I needed transfusions asap.  I had to enter the hospital cause they couldn't fit me in as outpatient and that way I could see a neurologist about the MRI results.

Prior to that, I'd been having light headed spells, weakness, and right leg pain, plus aphasia.  After I got some blood, the hemoglobin didn't go up much, so I got a second transfusion.  I had asked for some antibody tests for diabetes the last time I had labs and finally found out they were positive which meant I do have type 1 - NOT type II.  Talk about frustration!!!  If I didn't research my own illnesses and ask for my own tests - I'd be dx with the wrong things.  It does make me upset.  The diabetes just wasn't making any sense.  My diet, weight, history etc. just didn't fit with type II and did fit with LADA - Latent Autoimmune Diabetes in Adults.  It means I may need insulin asap to keep from destroying all my B cells.  Of course that means another uphill fight.  

As far as the neurologist - he said he'd never seen RE in anyone - much less an adult - so in his gut he didn't think I had it. It was too rare!   I wondered if he'd looked at my chart - I'm the essence of RARE cases.  The MS shows increased lesions but none enhanced , but the hemangioma and degeneration of the junction of the spine at the foramen magnum is frightening.  I didn't think that much of it cause everything pales in comparison to the RE.  We're going to do a follow up MRI in 2 - 3 months.  

While I was in there, I had an EEG, an LP, an MRI, and MRA, and Upper Endoscopy to try again to find a bleed.  The Hematology - oncologist thinks I just fail to absorb iron and gave me an iron infusion (which I've had before with no problem)  However, this time, I had a massive bilateral backache and a soaring BP so they had to stop and give me a different kind.  I'll have to get them once a week basically forever - with breaks.

I will also have IVIG infusions - high dose for 5 days straight then once a month forever.  This will hopefully help a lot of things.  But, frankly, I think I don't have much time.  My Blood glucose went to 213 while fasting over 30 hours and when I got home, I was sweating so bad during the night, I tested and it was 254!  I'm quite concerned.  My insulin levels are low, c-peptides low, and GAD high - Autoimmune Diabetes.  WHAT Autoimmune disease DON'T I have??

I've slept pretty much since I got home Sat night, so have to arrange things tomorrow to start these new treatments.  I've gotten so weak on my right side (and left - just not as much) and the aphasia scares me big time.  It's embarrassing to not be able to talk well.

Having things that doctors don't know about and that research says has to be treated early puts a lot of pressure on me.  I can't see the best doctors due to having Medicaid and it's getting really frustrating cause there's no one else to ask.

Blessings everyone.  I thought I'd update and vent a bit.  I need it.  Jan
7 Responses
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352007 tn?1372857881
You are in my thoughts and prayers!

<3 hugs to you!<3

Lisa
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710547 tn?1295446030
Today's my third lying in the hospital for 6 hours getting infusions of IVIG - I guess it's one time I'm not sorry to be feeling like lying in a bed is all I could do!  Hope everyone had a great Easter!

Blessings, Jan
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Avatar universal
Please hang in there Jan

Mand
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710547 tn?1295446030
Hi,, and thanks for the well wishes.  I need to clarify a few things.  Lisa - I've had what they thought was type II Diabetes for months and first put me on Metformin, but I decided to try to go natural and change my diet completely.  I've always had a good diet before I got sick and have maintained a low weight, but as I got sicker, I did start eating more sugary foods, so I kept trying to believe the doctors.  Thing is - it just didn't make sense.  So - with diet alone, very very strict mind you - I was able to keep my BG down most of the time.  But I noticed that sometimes, even with less carbs than they recommend - I always eat less than they say - I'd suddenly go way up.  I'd heard that that only happened with type I.  Then when in the hospital and on the Diabetic Diet, I couldn't believe what they gave me!!  No way could I eat all those carbs.

So I kept my sugar pretty in range.  BUT, due to having so many procedures, I had to fast a lot and found out that not eating makes my sugar go way up.  It's something I'd noticed at home before.  I'm not talking about just 8 hours, but in the case of the hospital - 30 hours.  That's when I was 213.  But when I got home, I had 254 when eating my good low carb diet.  Now, I'd read that I needed to be on insulin, but they won't give it to me - even though they know I have LADA (adult onset type I) - specifically Latent Autoimmune Diabetes in Adults.  He said since we're upping my IVIG, we'd see if that helped first.  What?  I've been on IVIG since October - just once a month, but still, to save some beta cells to work with later if possible (which is the point), insulin needs to be given when you still have some.  And thanks for your input, but you're right - I am up on all the recommendations - even of insulin due to my reading and my ex-husband is a type II on insulin (cause he won't diet or exercise - dodo).

Jessica - it is encouraging to read about how well you are doing.  As mentioned above, I've been using IVIG for 7 months - initially due to having deficiency in an Ig subclass.  I looked up its effect on Rasmussen's Encephalitis (also autoimmune) and am scheduled for 5 days in a row, but we didn't have the protocol beyond that - so thank you, I'll tell my doctor. (which IS frightening, by the way, Lisa - to tell your doctor what to do!)  My current order for IVIG is said to be for my MS because my deficiencies don't allow for more than once a month and it is not an established treatment for RE.

I haven't had any bad reactions yet.  I've been getting mine in an out-patient cancer center at the hospital - same place I get my blood transfusions as an out-patient.  But with gas so high and needing to go so much, I'm going to go to a close regional hospital here in Belton.  I like being able to have a bed when I feel really bad, which they give to the blood transfusion patients - don't know what set up they have at Belton Hospital.  I hope that the higher dose doesn't change how I react.  I too couldn't tolerate Copaxone - NOR interferon.  The local injection sites got so inflamed, huge, and itchy I just couldn't take it - and I TRIED!  Headache I definitely don't want - I still have a Spinal Tap headache from when in the hospital, and I do NOT want to get another blood patch.  I've had three spinal taps and the last one, I had to get patched - horrible. This time - I did everything perfectly, but after coming home have gotten this headache that when I stand up gets really bad.

Anyway, we'll see how things go.  I admit, I feel I'm getting to the end.  I just don't see how my body can hold up much longer.  I'm not going gently into that good night, however.
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755322 tn?1330269114
Hi Jan,

You sure have had a rough time of it lately, girl. Please hang in there. Don't give up just yet.

I see you are going to have IVig treatments. I do IVig for MS as I failed Copaxone and my  Neuro didn't want me on interferons since I had breast cancer. I have to say IVig has really helped me a lot. I haven't had a relapse since I started it and slowly but surely I am regaining function. IVig can do wonders for all sorts of autoimmune issues so I am praying it does wonders for you too. It works over time, so you won't get instant results but I am guessing it will help. I sure hope so.

I started with the high dose for 5 days, then 2 days every two weeks then spread it out to 3, then once a month and now am down to 1 day every 6 weeks. It restores my energy which is now holding steady for almost the whole 6 weeks.

IVig is not without its side effects though. The most common side effect is a bad headache, so have something you can take for that. Some people get nauseous. Most of us just feel sort of under the weather for a few days after as the IVig does battle with our own immune system. We call it the IVig flu. Eventually, the IVig wins and you feel way better.

At our infusion suite, we are given the option of premedicating for nausea, with Zofran, for pain with Toredol, and most people get benedryl or another antihistamine for allergic reactions. I cannot take benedryl so I skip that and just get the zofran and toredol and have no problems. A good infusion nurse will watch you closely and will adjust the flow rate of the ivig to suit you. The slower it runs the less side effects.

Also there are several types of IVig, or rather brands. If you don't do well with one, another one may work just great. Luckily my Neuro picked the right one for me right off and I have used the same brand since the start.

I have been on IVig for 18 months and have made great friends at the infusion suite. It can be comforting to be around others with autoimmune issues when you can share the woes and joys (?) of your diseases. These folks understand what you are going through! We even have a Facebook support group.

I hold you in my heart, Jan. Hang in there and don't give up!

Jessica
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1394601 tn?1328032308
I am sorry you have been so sick.  I can't imagine how I would handle all this on top of ms,  I would probably thrown the towel in.  Stay strong my friend.
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352007 tn?1372857881
First and foremost, welcome out of the hospital! Lord knows it wasn't a Grand Island Bahama vacation!!!

Oh my dear lord in heaven -- you have your plate full!  For god's sakes you are dealing with a multitude of problems here. It is no wonder you are so sincere and kind to others when you have this going on in the background!!!  

Yes, I'm a "Medicaid" girl myself and I understand the treatment that you receive is less than adequate isn't it?  The respect as a human being, the "not working as hard" for you as oppose to someone who has blue cross blue shield or some other popular health insurance huh?  

Vent away -- please please, you have every right to do so.  I can't believe you are going through all of this at the same time!  

Blood glucose levels are suppose to be from 70 to 120.  If you are injecting insulin, ensure you are not "stacking".  Meaning if you test your BG after injection of insulin coverage and it is 200+ still do not give yourself another injection of regular insulin or novolog or whatever you are using. The insulin’s active time overlaps, which may cause hypoglycemia -- and another set of problems.

Do your BG testing consistently, and also I hope they had a dietary consult to give you some helpful hints on what to avoid to eat, things that are good, what to do when you're hypoglycemic or hyperglycemic. etc., diet and excercise, etc.   I know you did a lot of reading and helping the doctors along -- although I find that a bit discouraging -- dont you? Im sure you are aware of all of this because of your knowledge base so I wont go on preaching when there is none to preach.

Im just glad you're home, Im sorry about the aphasia.  I understand the feeling of embarassment.  When I was out with my cousin two days after my discharge from the hospital, we went out to a local place for lunch.  I still had the myoclonus and the right arm tremor which everyone turned and looked at some time or another.  I was embarrassed.  When we went for a walk I  had a waddle (due to my left leg feeling numb and dragging behind, and I looked like a Parkinson's patient).  Seriously we turned around and decided not to walk to the store were were going to go to.  I was too tired and felt like I had cement on my feet.

Soooooooooo, I know what you mean but not in the manner of aphasia.  I can't imagine.

Hugs to you

Lisa

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