whirlwind of a year- getting IVIG, ? diagnosis

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whirlwind of a year- getting IVIG, ? diagnosis

Postby Bella98 » Fri Mar 16, 2012 7:57 pm

Hello.. I would greatly appreciate any opinions/advice etc. It has been a crazy few years for me, and I'm currently undergoing IVIG treatment for "inflammatory polyneuropathy", also a diagnosis of atypical CIDP.. Anyhow.. Since my symptoms are atypical for CIDP, and I'm at the "right" age for MS and post partum, I always just thought I must have MS.. however my studies aren't coming back for that..

Here goes as brief as I can write:
I had my son 1 year ago..6 weeks post partum had an IUD placed (we underwent years of fertility treatments/5 miscarriages/heparin shots twice a day during my pregnancy to have my daughter and then got pregnant with my son 7 months later- we were truely blessed).. however I had rough pregnancies and we didnt' want another pregnancy for a while, They told me no estrogens due to possible blood clotting.. Had the IUD put in and they perforated my uterus. I ended up in the hospital a week later, had been internal bleeding (no external bleeding).. bloodcounts were really low- stayed in hospital a week and had blood transfusions.. ANYHOW.. after that I was weak all over despite counts returning to normal. I couldn't hold my son, walk do anything SOOO weak all over
A few months later I started waking up with my limbs falling asleep.. all night long it woke me up. My leg became weak, then my hips, then my hands - woke up one morning and they just didn't work.. then I got slurred speech and difficulty breathing. Numb ALL over with lots of tingling/asleep feeling. Also had flickers of lights in my eye and double vision- that made me nauseated.. along with vertigo spells (though short- minutes). and of course fatigue.
I went to the opthamologist- he said no ON. though my vision is just soo off! I saw about 4/5 neuros and then got into the university ALS clinic - this was my biggest and still is my biggest fear. I saw several neuros there and had my THIRD EMG in 4 months - all normal with exception of mild demylenation around my knee. No ALS everyone said - thank GOD! anyhow.. i got so weak they hospitalized me and started IVIG..
I have had two brain/c spine MRI's. first one at the first month of symptoms - no lesions.. Second one one brain lesion and one possible c spine lesion (the radiologists disagreed on this - one said yes one said no!?!?) .. I had VEPs- which they had to repeat on one eye, but determined as normal. Two LP's- upper limit of normal protein on one - no O bands. second one I had meningitis from the IVIG so elevated protein - but no O bands.
Tons of blood work, and skin/punch/nerve biopsies show nerve abnormalities/decreased in everyone (foot, calf and hip)

I am 31 years old- reflexes are normal/brisk (they have been brisk all my life). Hands have fully recovered after second IVIG. eyes and everytthing had almost resolved after the second treatment. I got a virus/cold with fever 1 month ago and had a "relapse" they are calling it. it "hit" bilateral hips, eyes and face/speech (my facial muscles are weak and tremble). last IVIG "fixed" these things.
I have intense tingling/numbness sensations.. but here is the really scarey part for me - I have tongue atrophy (though the neuros can't tell - I sware it is changing slowly), and I also have hand atrophy - equal both sides- the emg is normal everytime in the muscle that is wasting. I also developed urinary incontinence during my last "relapse"
I have water dripping down my limbs sensation ALL the time. sudden warm sensations. all symptoms worsen with heat.
no hoffman, no babinski etc. every muscle is just shakey with fatigue when exerted.

My question is so many of my symptoms seem like MS.. but with two basically normal LPs, normal VEP's and nonspecific MRIs at this point (though wierd I am developing lesions). is MS still a possibility?? I know IVIG can help MS, but won't during a relapse, which is what happened with me it seems. I am at the prime age and post partum for MS.. and I have thought I had MS years ago with eye pain/blurry to light and flashes and eye soreness with movement. I guess my point is that I still really have a fear of ALS (that's what the first dr told me he thought it was before the EMG- I still have PTSD from that big time at 30 years old with a newborn and my girl under 2 years old). All the other dr's including ALS clinic dr's here say no way and kind of laugh.. So I pray it is an irrational fear. I want to just be crazy when it comes to that fear!
Anyhow.. Just curious if yall think it could still be MS? I want to be seeking the correct workup from here on out as well as treatment. thank you in advance for any advice/opinions or help!
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Re: whirlwind of a year- getting IVIG, ? diagnosis

Postby Bella98 » Fri Mar 16, 2012 8:57 pm

I meant to say (sorry I blabbed too long)!! My very first symptom was loss of proprioception of my limbs.. I was holding my son and didn't know where my arm was (he was on it and I didn't even know, couldn't feel it).. I have this sensation the majority of the time- I just don't know where my limbs are, it's the wierdest thing - I also apparently fail miserably at the neuros office when they ask if my toe is up or down.. ok, I sware thats it for my "blabbing" :)
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Re: whirlwind of a year- getting IVIG, ? diagnosis

Postby NHE » Sat Mar 17, 2012 2:08 am

Welcome to ThisIsMS. I don't know if this is relevant to you, but I thought that it might be important to mention that vitamin B6 toxicity can cause a loss of proprioception. If you're taking supplements, then you might want to look at how much B6 you're getting.


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Re: whirlwind of a year- getting IVIG, ? diagnosis

Postby lyndacarol » Sat Mar 17, 2012 8:56 am

Bella – I also welcome you to ThisIsMS. Do not apologize for what you have posted. We are here to listen; most of us have been in your same position of frustration, fear, lack of knowledge of this disease. I had the same problem with proprioception when the doctor moved my toe up or down; I simply guessed, I figured I had a 50-50 chance of getting it right.

You will find that this group is sympathetic to your situation. Ask any of your questions, we will try to answer based on our experiences and our own unique ideas. I encourage you to read and learn as much as possible about MS. Start with a GP or internist who is willing to work with you, who is more of a "disease detective," and with whom you feel comfortable and trust. Ask him to begin with no preconceived ideas, establish a baseline with a thorough physical exam including blood tests for cortisol, glucose AND insulin, the thyroid hormones (TSH, Free T4, Free T3, Total T3, Reverse T3, and antithyroid antibodies), vitamins and mineral levels such as vitamin D3, vitamin B has NHE suggests, and others as jimmylegs will suggest to you.

Follow a healthy lifestyle and diet – this will benefit your entire family. There are many cases of dramatic improvement with diet and exercise, such as http://www.TerryWahls.org Read the wealth of information on this website; I think there are many good things in the Diet forum here.

All the best to you, Bella.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: whirlwind of a year- getting IVIG, ? diagnosis

Postby Bella98 » Sat Mar 17, 2012 12:43 pm

THank yall both so very much for taking the time to respond and your kindness! I really appreciate it, especially during this undiagnostic certainty time, which is just so scarey!!!!
NHE- Funny you mentinon B6.. I was told after many miscarriages that I had MTHFR and to take 5MG of folic acid a baby asprin, and then a B6 and B12 supplement. So thats what I did for almost 3 years. I had a GI issue- went from having 1 bowel movement a day to up to 20 after the IUD issue.. They thought I had celiac (triggered by the IUD "trauma") so I went gluten free- that's when the neuro symptoms really developed (the same week I went gluten free). I had changed my multivitamin to a gluten free one, which incidently had even more B6.. SOOOO a week after stopping the B6 supplement and multivitamin they measured my levels and it was twice the upper limit of norm... so we though - ok that's our answer!! However things continued to worsen and fast.. and I have been told to avoid all vitamins (with the exception of folic acid). I used to not have burning pains (which is what i'm told B6 can cause) but now I do. I have every type of pain/paresthesia

lyndacarol- thank you so much.. I just feel lost sometimes with my body being completely out of my control. I continue to eat gluten free. My GI symptoms resolved after I was admitted into the hospital and started on IVIG.. though I was also given big gun antibiotics and an antiviral for the meningitis that the IVIG caused.. so not sure which one "fixed" my 8 month of bowel issues - I felt like I was literally starving to death - I was hungry ALLLLL the time, and ate high calorie foods CONSTANTLY even waking in the night to eat.. ugh.. I have had all those things checked - with the thyroid MULTIPLE- probably FIVE times haha.. post partum thyroiditis was high on the list.. but unfortunately no cigar- gosh that sounds like a lovely diagnosis now! Cortisol, vitamins etc all tested.. My only abnormalities were - my ANA was 1:80 when I had my worst GI flare, then up to 1:640 a few weeks after my neuro symptoms started.. My vitamin D was 20 I think (so i'm taking supplements). My B12 was 1200, B6 elevated (can't remember exact number).. and my CMV which used to be negative at the end of my pregnancy with my son is now positive (though they aren't sure if this was before or after the first day of IVIG that one was drawn).

Another question for yall - spacicity. what does that feel like? I have had a few dr's tell me "at least you don't have spacicity" months and months ago. Then starting last week my calf feels pulled, or like it might cramp when I walk, its on my most affected/numb leg. Maybe its just a mild cramp, but I worry it's spacicity. Thanks again for yalls help, I greatly appreciate it. I just look at my kids and loose it at times, for fear of a far worse Illness that wouldn't allow me to be there for them, and even worse, that they wouldn't even remember me as they are so young.
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Re: whirlwind of a year- getting IVIG, ? diagnosis

Postby lyndacarol » Sat Mar 17, 2012 5:37 pm

Bella – You mentioned having had many miscarriages; I wonder if you were ever diagnosed with Polycystic Ovarian Syndrome (PCOS), another "autoimmune" disease, which is often characterized by difficulty getting pregnant, miscarriages, with excess insulin, and excess weight. I have MY unique ideas – I wonder if by going gluten free you inadvertently reduce your consumption of refined carbohydrates (which convert quickly to sugar in the blood and spike insulin) and by so doing reduced the amount of insulin your pancreas produced.

I understand your desire to try anything that might help, I, myself, have tried three MS drugs, but continued to deteriorate during the 10 years that I took them and gave them all up years ago. Until the disease is understood and the cause is known, how can ANY effective medication be developed? Drugs are usually quite strong with many undesirable side effects; what was your doctor's rationale for putting you on IVIG? You said you felt like you were starving to death; did you lose weight during this time?

As for spasticity… my experience has been involuntary muscle movements – the muscles contracted so strongly in my upper arm I thought surely the bone would break. It didn't, but the pain was intense for days! Now, spasticity is limited to the legs. By bedtime, the muscles in my upper legs alternately contract and pull up. I think "a Charley horse" falls into the category. Increased blood flow with exercise, even isometric exercise, seems to stop these spasms. I encourage you to use a stationary bicycle (a University of Illinois study found this improves spasticity) or other exercise to avoid this problem.

You will teach your children better than most "normal" parents; you will cherish every minute with them; you will sit and read with them; you will listen to them and discuss the events in their lives--they will know they are important to you, they are special!
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Re: whirlwind of a year- getting IVIG, ? diagnosis

Postby Bella98 » Sat Mar 17, 2012 6:54 pm

lyndacarol - thank you so very much!!! Your words about the kiddos brought me to tears - the good kind! Having them has just changed everything (for the better of course), however it also has made me think twice about risky things like horseback riding (jumping) and all the things i used to do- since my main goal is to be here for them.. and then my body starts to fail as soon as I was done with the trying to get and stay pregnant and nurse babies etc.. we were ready for things to calm down a bit haha - not that anyones life is ever "calm"..

Funny you mention the PCOS... in fact I was diagnosed with that.. I apparently had one of the worst cases of endometriosis that they had ever seen, which is crazy, since the only symptom I had was spotting and then they found an 7.5cm endometrioma- had surgery to remove that ovary and they found me eaten up with endometriosis- never had pain though, not more than a motrin couldn't handle! The one remaining ovary appeared like a PCOS ovary, I do have recurrent cysts(again not too painful though), I took metformin for about two years (fertility + pregnancy of my daughter). Though my insulin was always within "normal" range and I've always been very thin as my whole family is (though my thin brother has pancreatic issues- severe pancreatitis and he isnt' a drinker or anything else).

I like your theory- I was nursing my son (absolutely idiotic of me and I regret it)throughout the blood transfusions and the GI issues - yes I lost about 18lbs below my "normal" baseline weight. I have always lived on cookies and carbs- especially when nursing, so it was a BIG switch to stop gluten. It was miserable being that starving all of the time - MISERABLE. i could barely put one foot in front of the other and my muscles were ALL too tired to even make the "crying" face. I told my husband I was going to starve to death before my dr figured it out. They admitted me into the hospital for fast heart rate (130's)and dehydration (though labs all looked normal) endoscopy and colonoscopy just showed gastritis and esophagitis.

Now I maintain my weight - still not up to my normal weight- I think I have more flab less muscle, but I never feel abnormally hungry.

As far as the IVIG- I had seen multiple "suburban" neuros - a few of them acted like I must just be a stressed out "new" mom who works at a stressful job etc... the only thing stressing me out was this situation and them! haha.. The last thing I had time for was to see dr's! I ended up at the ALS clinic at the university here- supposed to be a great place... 3.5 hours with two dr's and in the end they both were like "huh"! which was unnerving.. but as long as that EMG was clean of MND/ALS I didn't care and can handle just about any other diagnosis. Anyhow.. things worsened fast- I kept waking up with generalized chest heaviness- I went to sneeze and couldn't take in the breath before the sneeze.. I think at night I hadn't been breathing deeply enough. I started having pretty bad breathing issues and heart rate went faster- it was when I couldn't even bare down to go to the bathroom (core muscles didn't work either), swallow, or even sit upright for more than a few minutes (even my shoulders trembled with exhaustion if I had my arms to my side), they admitted me and thought? wierd Guillian Barre/post viral atypical thing?
The inpatient neuros (about 10 of them) thought MS or GBS.. and in the end after a week were all like "huh"! they ALL said no als- but again the tongue atrophy, muscle atrophy, twitching all over is more than freaky -though I know my "story" doesnt' fit.... I am an atypical presentation of something.. just don't know what which makes me crazy.. thinking worst case scenrio. I wonder if the spots that were new mean anything on my MRI's? (sorry I ramble!!!!)
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Re: whirlwind of a year- getting IVIG, ? diagnosis

Postby lyndacarol » Sat Mar 17, 2012 8:39 pm

Bella – I will share a little more of my story since we have something in common: endometriosis. However, in my case brought me MUCH pain. I had no luck in getting pregnant until reconstructive surgery was done. My doctor removed endometrial cysts the size of small oranges from both ovaries; about 20% of my ovaries remained. But six months later I was pregnant. After our son was born, the doctor said he thought I would never have a child. After trying unsuccessfully for a second child, I learned that endometriosis had returned. And awful pain again! This time a hysterectomy was advised. So I know firsthand how precious children are.

You mentioned that your insulin level was always within the "normal" range; the ideal insulin level is 3 UU/ML and below. My first fasting blood insulin test had a result of 12 UU/ML; since that time I have never had test results below 9 UU/ML.

By the way, I doubt that MRI spots (lesions) have any connection to MS. Upon autopsy, people with NO symptoms of MS in their lifetime have been found to have many lesions; many people with MS symptoms have been found to have NO lesions.
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Re: whirlwind of a year- getting IVIG, ? diagnosis

Postby Bella98 » Sun Mar 18, 2012 7:19 pm

Thanks so much!!! Yes, kids are truely a miracle.. Our dr- fertility specialist told me (since we had SOOO many issues - every month we discovered a new "hurdle")that he just wasn't sure.. that I was a very complicated case... after years of treatments- injections IUI's, losses etc etc etc.. I had to be placed on birth control pills due to a lot of cysts after a miscarriage... two weeks into the pills I threw them out since they were causing some issues, and walla!! Pregnant with my daughter!!! it was crazy!!! and amazing! :)

I wasn't sure if the lesions were significant since they weren't on my MRI's 3 months prior.. and had since devloped.. I also have had wierd vision since this all started.. and it is getting worse.. I thought about it further, covered up one eye etc.. so i have double vision (well ghost/skewed vision- aka a shadow of the image on top and on bottom of things)...One eye makes the imagedouble below the actual image and the other above it.. can you have optic neuritis without it being visable on opthamalogic exam??
Ugh, this stuff is all so overwhelming.. I feel like My body is gonna give in before anyone ever figures it out :(
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