My MFS Experience
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February 28, 2008 at 11:34 pm
I’m writing to share my own MFS experience. I’ve read many of the stories on this forum over the months, and my heart goes out to the many people who have suffered through this. At the same time, it has encouraged me to fight for my own recovery. Here is my story…
I had just returned from a trip to Italy, and was feeling particularly tired. This was the first “sign”, although I never would have suspected what was to follow. At first I thought it was jet lag.
My first “real” symptom came 4 days later on September 25th. While eating breakfast, I had a strange experience. After a bite of cereal, the coldness of the milk generated this sort of tingling in my mouth that slowly moved around. It only lasted about 10 seconds, but it immediately raised a red flag in my head, as I had never experienced a sensation like that before. If it had continued, I would have gone to the doctor. But it didn’t so I didn’t.
The next morning (Wednesday) I woke up with my fingers tingling, and my vision not quite right (unbeknownst to me, on it’s way to double vision).
My doctor ran the basic battery of tests: EKG, vision, CAT scan, blood work – which all came back normal. So I was referred to a neurologist.
The next day (Thursday), I woke up with full double vision. I went to the ER, where they ran even more tests: complete blood work, an MR of my head, and another EKG. Everything came back normal.
Before leaving the hospital for my first neurology appt, I asked for an eye patch. Little did I know that I would be wearing a patch for the next 3 and a half months.
The neurologist did a very thorough evaluation of my recent history of symptoms, and a very thorough examination. At this point, I had not lost my reflexes, and my strength was normal. My primary symptoms were double-vision, and tingling in my hands and feet.
He narrowed my symptoms down to 3 illnesses. The illness he thought I was most likely suffering from was GBS – although even he admitted that my symptoms were not the typical “ascending” symptoms most GBS patients have. He ordered additional blood work, and scheduled an appointment for me for the next day for an EMG test.
The next day (Friday) I woke up with droopiness on the right side of my face. My afternoon appointment with the neurologist resulted in another very thorough examination. By this time, I had lost my reflexes, and some upper body/lower body weakness had set in. My neurologist was pretty certain by this time that I had GBS. He recommended a 5-day IVIG treatment.
He called the hospital to arrange treatment. However, because this is a rare disorder (and it was the end of the month), the hospital did not have any serum available. So he arranged for a private company to come to my house the next day to start treatments. However, shortly after returning home, my neurologist called to let me know that the results of my blood work from that morning had come back, and that my IgA level was low. (IgA is an antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract.)
A normal IgA count is between 80 and 350. My initial count was 13. Because of this low IgA count, he thought I would be at risk for anaphalactic shock if I received the IVIG treatment, so he recommended Plasma Pheresis instead. (Later on, after a visit to an immunologist, I learned that as long as I have some IgA, I cannot go into anaphalactic shock. However, my neurologist was doing what he thought was in the best interest of my health, and I can only thank him for that.)
The hospital my neurologist was affiliated with did not offer this treatment, so he recommended that I admit myself into the ER of another local hospital the next morning.
That evening, I went to bed with a dread of waking up with additional symptoms, as I had done the previous 3 days. My head pounded on and off, I worried about complications such as respitory failure, and generally, I had no idea what to expect.
The next morning (Saturday), I took the last shower (unbeknownst to me) I would be able to take for some weeks (39 days, to be exact).
My sister drove me to the hospital, where I was admitted me to the ER. They took my history, performed a few more tests (lumbar puncture) and talked with my neurologist.
By evening I was finally admitted to the hospital. I was admitted to the stroke ward so that they could monitor my heart, blood pressure, and oxygen levels in my blood. This is because, I was told, GBS impacts the autonomic nervous system, which controls blood pressure and heart rate. I was also given a “vital capacity” test every 4 hours to monitor the capacity of my lungs.
The next day (Sunday), I had an MRI done of my spine (1 hour and 20 minutes), and following that, a Quinton cathater was inserted in my right jugular, specifically for the plasma treatments. By the time I had returned to my room, it was evening, and I was exhausted. But they started plasma treatments immediately. I felt pretty sick during that first treatment, and could not wait for the procedure, which took 2 hours, to be over. After the treatment, exhausted, I collapsed into bed.
The next 12 days were busy. Early on, they confirmed my condition as Miller-Fisher Syndrome. I had evidence of the GQ1b antibody, and they were able to trace the cause back to the Campylobacter jejuni bacteria. Because I had a gastrointestinal infection while in Italy (just about 10 days before my first symptom), it appears I ingested this bacteria while on vacation.
The plasma treatments seemed to help. Within the first few days, the tingling in my hands and feet completely went away. All that was left in my hands was this minor, minor sensation change, which I felt when touching water. The strength in my upper and lower body also improved.
At first, the plasma doctors (in coordination with the hospital neurologist) set me up to have the plasma treatments every other day. I would wake up the day after a plasma treatment feeling slightly improved. But the next day, I would see a decline. After only two treatments, I woke up one morning with the left side of my face paralyzed. This caused the doctors some concern. Next thing I knew, I was being admitted to the Intermediate Intensive Care Unit (IICU) They also decided to increase my plasma treatments to daily (for a time, until I improved).
Since my condition had not worsened since the original facial paralysis, they monitored me for a few days in the IICU, then back in the stroke ward for a few more days. After two weeks total, I was released.
For the next 3 weeks, I continued to receive plasma pheresis treatments. In all, I received 16 treatments (many more than the average 5 treatments most patients receive).
Upon my return home from the hospital, I immediately started physical therapy. My therapy consists of accupuncture (to boost my immune system and to improve my facial weakness), e-stim on various points on my face, laser therapy, and facial massage. I have been receiving physical therapy – 3times a week – for 4 1/2 months now, and I believe it to be truly life saving.
The MFS had caused inflammation all over my head. My face and head were sore to the touch, and early on I had debilitating headaches. After about a week of treatment, my headaches went away. And they’ve not returned. The soreness also slowly went away with the treatments.
By Thanksgiving, I tested for the GQ1b antibody, and my tests came back negative – meaning I had no more antibodies left (thanks to 16 plasma treatments!)
The autonomic nervous system issues I had experienced in the hospital (low blood pressure and low heart rate), also went away, as confirmed by a holter monitor test in November.
By early December, I returned to work (after 10 weeks off), and was happy to be back in the swing of things.
By Christmas, my double-vision was gone (mostly gone – except for slight double vision peripherally, which continued to improve over the months).
And slowly, my facial weakness is resolving. Early on, I could barely move a muscle on the left side of my face. I had to tape my left eye shut (because I could not blink), I couldn’t smile, and eating took four times as long. I drank out of straw, and had trouble annunciating.
Today, I no longer wear a patch, no longer tape my eye, am blinking (not completely, but almost there), can smile fully, can eat with no problems, can drink without a straw, and can wink with my left eye.
I still have a little progress to make, but I can honestly say that I am almost completely recovered from my MFS.
Every day I wake up and thank God for seeing me through this. It was not easy, like all of you know. I was scared many times, both in and out of the hospital, dealing with these changes in my body, the seemingly slow recovery, and the unknown. But I refused to give up on my recovery. And those around me refused to give up on my recovery. They rejoiced my seemingly small triumphs, and let me know in many different ways that it was all going to be OK.
That’s not to say I didn’t (and don’t) occasionally have a bad day or two. But I don’t let it linger. I have my pity party, then move on.
I don’t say all this to boast. I know there are many out there who have been hit much harder than this than I have, and have had bigger challenges to overcome. Instead, my goal is to “pay it forward”, so to speak, and share the support that’s been imparted on me. I wish for every GBS patient the strength to stay completely committed to their recovery.
I wish you all peace and good health.
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February 29, 2008 at 11:03 am
Welcome to our rare group. We are “special” and thats not a good thing! You are making good progress, though, and there is just nothing better than that. Your experience mirrors many others yet with a few twists and turns. I call the Miller-Fisher Varient, “GBS-Upside down”. Please “chat” with me any time.
Alma
GBS-MFv 1993 and 2004
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February 29, 2008 at 4:47 pm
Thanks, Alma. I am so curious as to how many of us there are. I’ve been told that only 1% of the GBS cases in the US are MFS. And that this is more prevalent in Asian cultures, e.g., Thailand and Japan.
But I do wonder what other peoples’ experiences are – those twists and turns you talk about.
Thanks for your comments!
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March 1, 2008 at 5:19 am
Hi Alma and PKS,
Some of us with CIDP have Miller Fisher as well, it isn’t common and many neurologists will swear that CIDP patients can’t have cranial nerve involvement. HA! A small percentage of CIDP patients have cranial nerve involvement, and a small percentage have autonomic involvement as well. I can tell you right now that my cranial nerves have been much more of a problem than my arms or legs. Oh the PAIN! Argh! How do you lie down at night? Everytime my head touches the pillow it hurts! 😮Sometimes my nerves are so inflammed that there isn’t anything I can do except go lie down in a dark room and try to prop my head so none of the nerves are getting compressed – that gets boring!
I am very happy to hear you have recovered a lot of your function – it gives me hope that some day I’ll be able to see, hear, smell and taste again properly – not to mention chew, swallow and speak. I can’t even begin to describe to my friends and family how depressing it is to not be able to interact with the world in a way we expect and have become accustomed to.
Sigh. If my dogs weren’t so lovably stupid I’d consider training them to lead me around – but I know I’d always end up at the fridge if I tried it now. :rolleyes:
take care,
Julie -
March 1, 2008 at 10:21 am
Hello again, PKS
Have you registered with the gbs foundation? They have a place for you to indicate that you are a Miller Fisher GBSer and would like a list of others and will send you a letter with names, addresses and phone numbers of all of us that are known. I do not know how current the information is. I was in the very first attempt to organize a list of us in 1994 and it took about a year to find a dozen of us. I was not on line then ( I do not know when this started up) so I was a pen pal with a few for a while but we drifted apart and I have lost contact, completely. I like the instant on demand method used in this medium. You are on the right track – just follow your nose thru all the threads and go to the adult section and main forum because there is a wealth of personal information there. 🙂 I tell my friends that I just got this because I am such a show-off. We are a rare-breed!;)Alma
GBS-MFv 1993 and 2004 -
March 3, 2008 at 3:26 am
[QUOTE]The next morning (Wednesday) I woke up with my fingers tingling, and my vision not quite right (unbeknownst to me, on it’s way to double vision). [/QUOTE]
Ditto! I thought i had slept on my hands funny and just thought my eyes were tired. It wasnt until i was lying in hospital that night looking up at the ceiling that i realised i could see two of everything!
What made me realise something was seriously wrong was when my voice went funny – i started to sound nasal and couldnt say certain letters. I went straight to the local hospital but they werent too concerned, thought i was overreacting. Luckily a speech pathologist took a look and saw my palate wasnt working and that it was most likely neurological – has anyone else heard of palate being affected?
To cut a long story short i went downhill very quickly and by the next morning couldnt walk and had to go by ambulance to see a neurologist who diagnosed GBS straight away. By the next morning 48 hours after my first symptom, i was in ICU ventilated and in an induced coma.
I had 5 days of IVIG while i was in the coma and when i woke up i was completely paralysed – including not being able to open my eyes.
I was fairly lucky in that my symptoms came on very quickly, but i also improved fairly quickly. I got a trachy after 2 weeks and was weaned off the ventilator over a couple of days. I gradually regained use of my hands and was able to open my eyes although the double vision was disconcerting and i am short sighted anyway – it took me a while to mime that i needed my glasses lol, had no hope of asking for an eye patch. Eventually on of the doctors suggested one, i think they realised from my excited nodding that that was what i had been wanting!
I spent 4 weeks in ICU and another 10 days on the ward before being transferred back to my local hospital for rehab. I had 10 days of rehab and was able to walk out of hospital completely unaided. The only problem i had was the double vision and that disappeared overnight about a week after i came home.
It will be 2 years in July and i would have to say i am virtually residual free, event the fatigue has improved over the last year or so.
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March 4, 2008 at 5:42 am
How long did it take for your vision to settle down? It’s been 18 months for me and I’m still hyper sensitive to light, still get double vision, still can’t focus on words, can’t take contrasting text/colors, can’t watch TV/moving things for long. The problems with my cranial nerves are seriously affecting my quality of life right now and I’m wondering if I need to be more aggressive in treatment… I’m really scared I will never be able to see (or hear) properly again and that gets me really depressed because I’ve got a whole room full of paint, paper, craft supplies, half done paintings, barely started comics, etc. not to mention dozens of projects on the computer that I can’t do because I can’t look at the darn thing for too long without having my eyes cross. Oh, and did I mention that I don’t make tears anymore either so even if I get depressed enough for a good cry it doesn’t help. 🙁
Can anyone offer me some hope?
Julie
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March 4, 2008 at 10:40 am
I’m 23 years old, fully recovered from MF, diagnosed on DEC. 2006.
I would like to know where I can get info. on people that are suffering from MF in the NYC area? I would love to help out, share my story, give them my support.
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March 4, 2008 at 11:45 pm
Alma – Yes, I have registered with the GBS foundation. It was one of the first things I did upon returning from the hospital. They had great information that helped me understand this syndrome immensely. I did register for the Campy list and the MFS list. But I couldn’t think how to even begin contacting people. In the end, I didn’t contact anyone on the list. Like you, I find the forum to be easier to use.
Julie – Early on, I was confused about the whole CIDP/MFS connection (if there was one), and my neurologist reassured me that it’s possible to have both, but even rarer than just having MFS.
I do also understand the cranial pain associated with inflammation. I had intense pain right above my ears. My doctors told me that there is a major muscle in that location that controls facial muscles. I couldn’t sleep on my sides for quite a while. It turns out that after I started PT, my doctor found all these points throughout my face that were tender and sensitive. Luckily, unless you touched those points, they did not hurt me. Laser therapy, e-stimulation, and accupuncture has helped a lot. Maybe they can help for you as well. I can’t imagine you’re getting a lot of well-deserved sleep if you can’t find a comfortable position. I feel for you!
I think I went pretty aggressive with my treatments, and I believe it has all helped. So I’m all for encouraging people to do as aggressive a treatment as they can tolerate.
I also had light sensitivity, particularly in my left eye (I had facial weakness on the left). For me, as soon as the double vision resolved, slowly the light sensitivity resolved. Hang onto your hope – someday you will be better, and you will be kissing the ground every day, happy you made it through.
And speaking of crying, I could cry, but when I would want to, I would force myself not to. Because I could not blink my left eye, I had to keep it taped (even after the double vision resolved). And if I cried, it would mess up the tape, which was not always an easy solution to keeping my eye shut. LOL! I had about 3 months of taping my eye shut, and am so glad those days are behind me!
Montanasmum – it does sound like your symptoms came on quick, and left relatively quickly. My symptoms don’t appear to be as serious as yours, but, for instance, my double vision lasted longer. It is interesting to hear all the variations of this syndrome. But I am happy to hear you’ve completely healed.
Mosheshia – I, too, have thought of reaching out to others diagnosed with MFS in my area (Washington, DC). Maybe the foundation has some information on this.
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March 5, 2008 at 6:20 am
Well isn’t that just too cool – pks and i are sort of neighbors! I sent you a PM pks re: where I live etc. just didn’t want to put it on an open forum – you know sort of like putting up a sign “blind disabled woman lives here – come take what you want”. I’m paranoid but since it has saved my life more than once I’m not gonna change – remind me to tell you about the crocodiles one day.
Thanks for the suggestions about acupuncture etc. I haven’t actually done anything for my symptoms other than IVIg – I keep hearing “wait… it will come back to you” but frankly I’m getting impatient as this has been going on since July 2005. :rolleyes:
Mosheshia I think it’s terrific you are reaching out to people in your area, my thoughts on the population of the forum are that we are seeing a small slice of those who actually have the disease. I believe that for the most part the folks who end up here are those that are neither the very sick nor the barely sick. We get the middle of the road folks, those that have recovered, those that are in the middle of it, and those that have residuals. On top of that we obviously have a passing familiarity with the internet and computers, forums etc. which is a surprisingly small portion of the population. My point being that I’m not sure how many people in your area will show up on the forum, as opposed to how many may actually be in your area. I vaguely remember the social worker saying something to be when I was discharged about finding or creating a local support group. I’m not sure how that would work out because of privacy issues but perhaps your neurologist’s office would be a good place to start.
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March 5, 2008 at 9:50 am
Hello all: I can tell you that I have had MF 2 times and both were entirely different expierences. Keeping to the subject of double-vision, My first time in 1993 was a lighter case. My eyes were very crossed and totally dialiated. That lasted exactally 3 months. I remember vividly the first time I got some movement in one eye – I swear it creaked like a squeeky hinge! It was slight – improving little by little day by day and then 2 days later my other eye began to get movement. It was another 6 months before they really felt like my old eyes (the dialiation lessened in sinc) and my double vision problems were so slight I did not really even notice it till I had an eyeglasses exam and the DR (Who examined me at onset of symptoms & knew what was going on) pointed it out – and that I had a puny (his words) blink. Glasses with a prisim and eyedrops were prescribed. This was my “norm” until I got GBS-MFv again in 2004. This was a severe case. I do not remember anything of my 5 weeks in ICU. When I began to start recovery I was so weak and helpless that I do not know if my eyes were crossed or what – except that Dr’s looked at them and shook their heads! One eye was patched shut in re-hab so I could learn to walk again without getting dizzy from the double vision. It is almost 4 years out now. I still am sensitive to light, but not as bad as at first. I still have double vision but it varys according to how tired I am. I do not blink all the way so I have to use eye drops regularly or my eyes dry out to the point of getting “dry patch”. I guess this is my “new norm”. Anyway that’s my story about the dreaded double vision. My brother got shot in the eye with a b-b gun as a kid and has double vision, too! We both just “got used” to it. Happy to have read your stories and had some one who understands to compare war stories with!
Alma
GBS-MFv 1993 and 2004 -
March 20, 2008 at 2:00 pm
I am new to this site and have to say the information I have received thus far is awesome. In general the symptoms that I had relate as a perfect match. Now I will just have to wait this out and hopefully be back to normal in weeks or months.
Right now I am in week 5 since on set of very first symtom and 10 days since I checked out of my 5 day hospital stint. I am still numb and cross eyed. I have noticed that where I would have a “good” day then a “bad” day, I have moved forward to pretty much all good days now. Sleep is much better now, I went from getting maybe 2-4 hours sleep right after my hospital stay to almost normal sleep (7-9 hours) Headaches still predominate in the AM, but are controllable. Just tried popping some Shark Liver Pills yesterday and my wife also purchased someting called “Myelin Sheath Support” at the local Vitamin Cottage. I have not taken any of the Sheath Support yet as I wonder if I should wait til I start to get nerve function back?? Wife also came home with “Host Defense” a mushroom product that supposedly increases NK Cell activity… I have not tried the mushroom item yet, as I have not run by my Neurologist. Then too, she told my not spend my retirement on some of this stuff. I guess any thoughts from the field on this?
Still wonder how I could have got this syndrome. Anyone heard of the Herpse virus being involved? Weird but on two occasions as I was coming down with this I took a total of two Acyclovir tabs and my symptions actually seems to ramp up after ingestion…. Maybe my imagination. Then too, I work for a processed food manufacturer and sample samples all the time. Maybe another relationship?
Just more food for thought.
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March 21, 2008 at 10:31 am
hi mick & welcome,
mostly nerves need rest & time to heal. take care. be well.
gene gbs 8-99
in numbers there is strength -
March 21, 2008 at 12:04 pm
Hi Mick, and welcome. I have no experience with the supplements you speak of, if you post on the main forum you may get some input there. Not too many read our miller-fisher forum. From all I have read and heard the simple truth is that no one really knows why we get this – although a “trigger” may be identified such as the flu shot or stomach virus or in my case a simple sore throat. Getting better is just a s-l-o-w process. And sometimes a frustrating process as well. You came to the right place. You will learn more just reading thru all the different catagories and absorbing the information these veterns offer to us. Be well. And remember to rest when you need it!
Alma
GBS-MFv 1993 and 2004 -
February 28, 2010 at 11:30 am
Hello All,
I am new to the forum,and new to GBS. I was told by my Neuro. that I have GBS on Jan.11,2010. Doc. said I have a unusually case because of my eyes being crossed and when I do see straight ahead,my eyes work independently. After looking on the net and reading this forum,I have the same exact symptom’s as those listed here in front of me ,down to the way it has happened. my first signs were my mouth tingling when I drank Coke.The rest is all the same. So I thank everyone for posting there experiences,so others can get some sort of comfort out of this. At this Time The Doc says I to have MFS. -
February 28, 2010 at 3:36 pm
Welcome to our little forum. The MFv is so rare – we do not get a lot of posting here. Please feel free to join the Main Forum or the Adult GBS Forum as many of your symptoms and the things you are experiencing is shared by most GBSers.
The tingeling mouth or numb tongue are a current topic on those places right now! You are still in early recovery stages, The most important advice I received is “rest when you need it”. Good Luck. -
December 21, 2010 at 3:47 pm
Hello, Guys,
My MF hit back in 2000, where I posted quite regularly on this forum for a year or two. After placing my name and contact information on this site’s MF list, I’ve received many calls from individuals just diagnosed. Very good networking off of this list, and I encourage all of you to be placed on it.
MF hit my vision first, and most severe. Along with the other symptoms many of you list i.e. loss of reflexes, weakness, ataxia, etc., this combination mixed with cross-eyed opthalmapelgia made me a frail and discouraged camper.
After the above symptoms subsided in time, my double vision stayed the same and did not improve. After over a year of chronic diplopia, I opted for strabisimus surgery at the Doheny Eye Center @ USC. This was quite successful, ridding me of 90% of vision problems, enabling me to live without an eyepatch. After 10+ years, my vision is fine, bar some peripheral double issues, and eye fatigue at the end of the day.
Having been an elementary school teacher for 27 years, MF was quite a forced pause for me. Due to the damage done to my vestibular nerve, along with chronic fatigue and vision residuals, I did not return to the classroom, and later went on State Teachers Disability. Since then, I’ve taught piano lessons in my home, and now love it … with over 30 students, I’ve found there is indeed life outside of the classroom! With a very supportive wife and community of friends, I’m a blessed man.
I must say, that I truly can relate to the fears and anxieties which are felt in all of the above posts, all justifiable and genuine. I must say I went through somewhat of a personal spiritual awakening during those days, and it has affected my life since … in a very good way. We all encounter “storms” in life, where we become desperate. Separations, loss, and illness are but a few. After encountering the Psalms and other Bible passages during my MF, I think now that it is in one’s brokenness and affliction that God, in his love, meets us. This connection changed my life completely. I’ve really not been quite the same since, and I can honestly say God is now “my refuge and my strength.” Has this happened to anyone else?
All of you are wonderful, caring folks, and I appreciate the support gained from your sharing. Thank you. Norm in CA
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