My story
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October 11, 2011 at 8:34 pm
Hi hoping someone may be able to help me.
My name is nick 25 years old, previous to this story I was a healthy male weighting 208 pounds worked at a gym part time so that was very much part of my life and was above average as far as muscle mass. I now weight 173 pounds and barely able to make it to work at my full time job and the gym I had to quit do to sickness and bed ridden existence now. Also had to move back in with parents due to this mystery illness.
July 20, 2011, after work i was having severe stomach pain, dizziness, chills and diarrhea, I went to the emergency room. They performed blood, stool and urine. They noted an elevated white-blood-cell count and asked that I return in two days. In two days they concluded that I contracted a food-born bacteria, specifically, camplobacter junji. I was prescribed thyzromax for ten days. All symptoms subsided and I went without issue for approximately two week.
On Sunday August 7th 2011, about 10 days after the antibiotic was ended, I experienced a bout of diarrhea and I experienced severe constipation and no urge to eat. On I began experiencing difficulty of stomach discomfort along with soft stool and tremendous lower back discomfort. Then the following day as i recall my difficulty breathing, unable to sleep and now severe back pain. I went to the back to the emergency room. They concluded that I was experiencing issues associated to the previous food poisoning and no further treatment was prescribed.
On Thursday August 11th, 2011 I was seen by a gastro who similarly believed that I was experiencing irritated bowels and other symptoms associated with the previous food poisoning. No other treatments were prescribed and he has scheduled me for a colonoscopy in two weeks. One After the appointment I started feeling numbness in my calves and fingers and feet. As days went by numbness continued. By the end of that week I was now unable to eat solid food having severe headaches and jaw pain along with tachycardia and orthotsatic hypotension and hand and feet numbness. I went back to the hospital they recommended I see a cardiologist and dismissed me.
Long story short its now October and the tests i had so far are tilt table (dx of Orthostatic Hypotension),CT scan of chest, MRI of abdomen and brain were normal. WBC is slightly elevated. Colon/Endoscopy mild gastritis and labled me with IBS and perscribed bentyl.
This past week I saw the neurologist and had an emg done I came back within the normal range for the test and nuero dismissed me pretty much.
As I write this I am still having fluctuation of dirreah to constapation never normal. My body temp is up and down with a severe feeling all day of cold hands and feet. I am wearing 3 layers of shirts and jacket to work while others have just a t-shirt on. I cant seem to stay hydrated either with frequent urination now occurring. Hands and feet arms and calves continue to go numb on and off or positional. Also I experience a burning sensation in both arms at night time on and off. I have a tremendous amount of muscle spasm going on along with twitches. I am experiencing jaw pain and a now has moved to my teeth hurting and constant daily headache on sides of my head. I am unable to handle food due to bloating and discomfort. I am waking up constantly during the night since the food poison. Where as before the Illness I could sleep through anything. At this point I lost 30lbs and still loosing having the rapid heart rate still, numbness, burning pains and IBS. I was above average healthy before the c junji infection and believe I may have gotten a mild GBS response to the bacteria…I dont know if its possible every doc says I wouldnt be able to move etc like cases I have read on here. But the C Junji is the only thing that makes sense to me….Was hoping for opinions and possible doctors in tri state area that could help with a diagnosis
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October 11, 2011 at 11:00 pm
Well, what is happening to you is a serious matter, and you need doctors who understand that and will help you with diagnosis and treatment.
GBS can be sudden onset, or slower onset, but the symptoms are similar, only the severity is different. Hopefully other members here can advise you what to do at this point in getting the help you need.
Keep a record of your symptoms; the doctors have got to listen at some point. You need to talk to a doctor who has enough GBS experience to check out your symptoms and deal with your present medical abnormalities. They shouldn’t be dismissing all these things. -
October 12, 2011 at 12:49 am
😮 I would say thay you should “cut to the chase” and head out to Mayo Clinic. If you cannot get an appointment soon- Just walk in as a “checker”. Problem is: which department should you think about going to first? Ask your family doctor. But don’t just sit back and search the web. Searching is great….but you need to get into a specialist who can help stop the progression of whatever it is you have. There are other big hospitals out there. I went to three docs and had multiple tests which were all negative. “Psychosomatic” Illness was what they were looking at when I said, enough is enough. I waited too long. Was misdiagnosed by a Dr. Selwa at the U of M Hospital in Ann Arbor, MI This caused me to have permanent damage- Act now! Do not wait.
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October 12, 2011 at 9:40 am
I have filled out the online application for the mayo clinic. Hoping to get contacted soon. How would the “Checker” work, if I fly there and just show could they refuse to see me? As far as doctors I was told by my primary that it would be best to see a Gastrointestinal Disease specialist first. I believe the nuerologist would be best to see from my view of how I am feeling.
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October 12, 2011 at 10:53 am
I agree with the advice to be seen at any top notch teaching or leading Medical Center.
Some illnesses are so rare that your average doctor, including, run of the mill neurologists have never seen them.
I applied to Mayo Clinic Rochester, Mn without a referral. They asked for medical records and put me on a waiting list. When I questioned the waiting list, the essential answer was “you are so lucky to be accepted, we turn away a lot of patients.
I am not familiar with the check in system at Mayo. Although I have heard of it. Seems as if you show up and take your chances. I reckon the problem would be figuring out who to see and not having the appropriate testing already ordered. For an answer, I suggest you call the Clinic and ask them, directly, how does that process work?
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October 12, 2011 at 2:51 pm
I am looking for a doctor with experience in GBS or other similiar syndromes. Doctors at Cornell in NY do not take my insurance I had called. I was able to get an appointment at university of Penn but it is not till Nov 22. Does anyone know of other doctors in the tri state area that are knowledgeable without having to wait month to see them?
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October 12, 2011 at 4:52 pm
Would it be possible to contact your primary dr & request he/she call University of Penn?
Often a specialist will be willing to fit you in if a dr calls to request the appointment. Just explain to your primary dr you have a feeling something more is going on that gasto inssues & you would like to see a neurologist. The worst your dr can say is no.
You can contact the GBS Foundation & ask them if they can help with your dr search as well. I believe they keep a list of neuros.
Kelly
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October 13, 2011 at 11:27 am
Nick,
It sounds like you might have mild GBS or myalgic encephalitis. It can be triggered by a virus or bacterial infection. Your symptoms sound very similar to mine. I was able to walk, function, EMG’s were normal, but I lost my reflexes, had numbness and tingling in extremities. I begged for treatment, steroids, IVIG, etc, but the docs would not give it it me. You may want to go back and read some of my initial posts under vaccine reaction, mine was from the H1N1 flu vaccine. I went to multiple neuros, rheumy, alternative medicine docs, you name it. Had a lot of tests and they all came back, “normal.” I lost 25 lbs too. Had a lot of gastro problems. Severe nausea, vomiting, constipation, had an endoscopy which was normal. I had a lot of the same issues that you are having, temperature issues, burning, twitching, etc.
I tried to go to Mayo and they denied me, said that they had too many patients with similar problems. I didn’t press it though and maybe could have gotten in if I had a doc recommending me. I would recommend trying to get there sooner rather than later. You will waste your time going from doctor to doctor who will scratch their heads. Not saying that Mayo will have the answer either, but at least you can get things ruled out and get peace of mind.
I ended up going to U Miami (I live in Chicago) in June, a year and a half post symptoms and have Fibro/CFS, which I think resulted from not being treated for my initial reaction. I tested positive for a low immune system and active latent viruses that are causing my ongoing symptoms (fatigue, joint/muscle pain, etc). I did recover in a lot of ways. I would try to get as much rest as you can, focus on a good diet (gluten free/dairy free has helped me), take a probiotic to help with gastro (that got me back on track), and other supplements. Try to reduce stress, get acupuncture if you can, do yoga, etc. I have found that the alternative methods have helped me the most. Good luck to you and PM me if you have more questions.
Jessica
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October 13, 2011 at 3:30 pm
I have an appointment next week in new york city with Nuerologist. I dont know how I go about trying to get answers from him, I would like a spinal tap to tell if the protein levels are raised from what I read as indicator. I do not know if they will order the spinal tap with the EMG being normal? Or what steps he would even take if it was positive being that the food poisioning was in July and months have passed.
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October 13, 2011 at 3:57 pm
Good luck! I did not have any good luck with neurologists, but you do need to make sure they rule out neurological causes. I did not have a spinal tap, but be advised that if you get a headache, make sure that they know because they can do a blood patch. I asked the doc what they do for the headache and he said, you have to lie flat for weeks. I found later that they can try to help you soon after if you get a leak. I think you have to drink a lot of water or caffeine or something like that. Best of luck to you.
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October 13, 2011 at 9:19 pm
From what I understand a spinal tap is one of the 1st tests given to someone who is presenting with tingling & numbness in their extremities.
I currently have 2 personal friends who are experiencing these symptoms & both of them (who see different dr’s) just had spinal taps. Both also had EMG’s prior to the spinal tap & both EMG’s were in the normal range. 1 has had an MRI with & without contrast of the brain & spine & a stress test along with an ANA.
Both were recently diagnosed with fibromyalgia.
Keep in mind that there are cases of CIDP/GBS where one will have a normal EMG. Emily had a protein level (during her 1st relapse) of 95 & had a nearly normal EMG (showed VERY slight demyelination). During Emily’s initial hospitalization the dr’s decided to forego putting her through the painful EMG & performed MRI’s of her brain & spine along with a spinal tap.
I was thinking more about Nicksprack & I’m thinking some of the symptoms fit with diabetes, especially the urination, weight loss, sweating & numbness/tingling. I’m wondering if any dr has explored that possibility.
Kelly
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October 14, 2011 at 12:31 am
GH-CIDP just a note that none of your links were working when I clicked on them.
Kelly
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October 14, 2011 at 9:05 am
I have had my blood sugar tested at the hospital eachtime I had gone in was in the normal range, no doctor has asked further about it. My MRI of the brain was done without contrast so I was wondering if another with, may show something different, it was originally ordered with both but the insurance denied it. I have been tested for ana, jaks, all heps, hiv, and a marker for lymphoma/luekemia at Robert Wood and all negative.Only thing high as of now is the LDH (rbc breakdown) and low MPV…… looked over throughly by oncologist hematologist. I am calling him to see if he can get me a appointment with the nuerologist there. I would say from where I was previous to being sick there is a ton of muscle weakness… I am getting the walking legs give out… shoulders strain to even pass a plate of food..my reflexes are all there though. Headaches jaw pain numbness cold extremeties and fatigue brain fog are main complaint. I got a bit of double vision this past week but only briefly during dizzy spell while watchin tv. I have sensations in my legs of water running down them idk how to explain it and at my toes its the same feeling like I put them in water. I take off my socks see if its sweat but nothing is there and they have been ice cold as of late.
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October 14, 2011 at 11:08 am
Nick, you’ve got a lot of our symptoms. You need expert attention as soon as possible. Initial weight loss is typical of severe food poisoning, but also a symptom of GBS. The ongoing muscle weakness, trouble walking, dizziness, tingling and numbness in the skin and limbs as the progression of the illness takes over. It seems as if the rest of your symptoms are gradually presenting in a case of slower onset.
That is what happened to me, and to many others on this forum. My doc took a ‘wait and see’ approach. Too much time passed and lots of damage occurred. Then a few tests, but the docs had no answers, advice or treatment for me. Nothing has been done in my case; and whenever I see a doc now, they just say that nothing can be done. I have increasing pain, more and more weakness, my reflexes are worsening and I’m losing functionality.
If you’ll check around on this forum, you’ll notice that many of us were very athletic and physically strong at the time of onset. That’s probably why we are still alive. Some of us are so tough and used to enduring physical stress/pain, that we have been able to ‘tough it out’ during many of our initial symptoms. This might be why we didn’t collapse in the way some GBS onset patients did. And therefore the docs didn’t clue in to the seriousness of our situation. Some of us had severe sudden onset & complete collapse and that got immediate attention and diagnosis. But others of us had slower onset, and though the symptoms didn’t seem as severe (likely due to our superior muscle development and stamina by comparison), the GBS symptoms still took their toll on our bodies then and later. That’s why our cases went undiagnosed or were diagnosed much later on.
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October 14, 2011 at 12:18 pm
Nick,
D.U. is right. There are a lot of us “walking wounded,” that I have met on this site that did not get treatment because we were not severe or the tests were normal. I did not get the spinal tap due to fear so I would recommend that. I wonder if it would have made a difference if I had done that. See a neuro as soon as possible. Go to the ER if your symptoms worsen such as dehydration, etc. You do have a lot of symptoms of Chronic fatigue Syndrome and Myalgic Encephelopathy too. Read up on that if you can too. Hang in there….
Jessica
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October 14, 2011 at 12:35 pm
Found this on a website:
Myalgic Encephalomyelitis Symptoms can include:
Physical Symptoms:
Muscle weakness and pain, especially in the shoulders, upper arms, thighs
Muscle twitching
Blurred vision
Numbness/pins and needles
Tender swollen lymph nodes, particularly underarms and neck
Joint pain
Poor circulation (cold hands and feet)
Chronic sore throat, often with recurrent flu-like symptoms
Irritable bowel syndrome
Sensitivities (to light, touch, food, chemicals, perfume, paint etc.)
Alteration of taste and smell
Headaches
Rashes
Dryness of mucous membranes (throat, mouth ,eyes)
Mouth ulcers
Uncomfortable or frequent urination
Cognitive Symptoms:Poor concentration
‘Foggy’ thinking
Difficulty speaking and choosing words appropriately (for example saying, black when you mean white)
Poor memory
Nervous Disorders:Interrupted sleep patterns
Depression
Mood swings, anxiety
Feeling ‘disoriented’
Personality changes (usually a worsening of a previous mild tendency) -
October 14, 2011 at 2:42 pm
In my almost 6 years of having a “sick” child I have found the best thing any person can do is arm themselves with information.
I think it’s great that others are giving you suggestions of illnesses you can look into. If you learn about them it will help empower you. Knowledge is power!
I think there’s a BIG difference in self diagnosing & searching for answers.
There have been quite a few people, who have posted here over the years, that were diagnosed with CIDP but their symptoms didn’t quite fit. With the help of other posters they were able to research different illness & go back to the their doctors with the info they learn & then get a new correct diagnosis. Dr’s do not know everything & they can easily head down the wrong diagnostic path….just like anyone else.
Keep learning, keep searching & certainly keep trying to find a new dr.
Kelly
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October 14, 2011 at 3:43 pm
I agree Kelly.
I am only trying to assist Nick, not have him self diagnose. I am sharing what I have learned. Another member on this forum shared his information with me and it led me to the doctor that I am seeing now. I finally have help and hope. Knowledge is power.
It took me a year a half of going from doctor to doctor to finally end up with a diagnosis. I live in Chicago, home of Northwestern and U of C, so not a shoddy medical arena. I had to go to Miami, to have a well-renowned doc look outside the box and do tests to confirm that indeed, something is wrong. Test after test I had was normal, doctor after doctor did not know what was wrong. I was in that rare category of having had a vaccine reaction, and most docs do not know what to do about this. The doc I am seeing now does. I wish that someone would have been able to share this information with me in the very beginning so that I could have avoided a lot of medical bills and the anxiety of not knowing what was wrong with me. I thought that I had every autoimmune disease under the sun and was sure I was headed for a horrible fate. I feel for Nick because I experienced a lot of what he is describing in the beginning and it was horrible, one of the worst experiences of my life. Nick, I really hope that you get some medical help and that you feel better soon.
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October 14, 2011 at 3:58 pm
Jessica – It makes me so profoundly sad it took so long for you to get a diagnosis. But at the same time, I am so very thankful for Emily’s quick diagnosis. I do not know how you could handle going that long, knowing something was wrong with you, but not knowing what it was or how bad it would get.
Emily’s symptoms progressed over months & weren’t really alarming & could be easily explained away as other things. (I mean, who in the world would think a 4 year old would end up with CIDP?) But man, once it hit hard (after the flu shot) she was in pretty bad shape. We took her to the hospital & within 2 days we had a dx of GBS & IVIG was started. I wish everyone could get as quick as a dx as we did. I don’t know that I could have handled sitting around & watching her suffer for months..let alone over a year.
I think one of the greatest things about this forum is that we can share our experiences with each other. I strongly believe early support for a CIDP’er is crucial. It’s nice to know other people have gone through the same thing as you & it’s even better to learn from their experiences.
Kelly
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October 15, 2011 at 4:52 am
GH-CIDP –
Sometimes it’s just not enough to accept the dr’s diagnosis. Sometimes a person KNOWS something more is wrong. Sometimes a person HAS to keep searching & learning & looking for answers. We cannot rely on ANY dr to help us 100%. We have to take our own healthcare into our hands & be our best advocates.
A little story –
Emily’s CIDP does not fit into the normal box. As I’m sure you’ve learned through my signature, she had cranial nerve involvement & right eye paralysis – which is not often seen, especially in children with CIDP.
We have a neuro who doesn’t know much about CIDP or IVIG but he was willing to listen. I did all the research. I made up the treatment plan.
We switched to a neuro who is a specialist in CIDP about a year into our journey. She took Emily off of IVIG, put her on steroids & wanted to sit back & watch her deteriorate while continuing to increase the dose of steroids. She wanted to take my 5 year old child & give her painful EMG’s every 2 months. She wanted to perform MRI’s & spinal taps every 6 months. Emily was her guinea pig.
We decided we liked the neuro who was willing to listen & learn & we switched back to our original dr.
Not to pat myself on the back too much, but the reality is, if it wasn’t for me doing all the research I have done my daughter wouldn’t be in the Junior Skating Club at our local skating rink. She wouldn’t have very realistic dreams of competing at nationals. She wouldn’t be able to ride her bike, or climb rock walls, or play short stop on her baseball team.
I don’t think what nicksprack is doing is wrong. It’s his life on the line here. He knows something more is wrong. He’s not sitting back & deteriorating & waiting for someone to give him answers. He’s being proactive & taking his healthcare & his life into his own hands. I say KUDOS to him!
Kelly
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October 15, 2011 at 4:17 pm
I am not trying to self diagnosis myself, I am hoping for the best of my situation and trying to cover all grounds… my first post statement was a synopsis of what I have been going through and if a (CSF) collection is needed to rule out possible causes I am willing to do that at this point. I am willing to do anything to feel a percentage better thats why I have collected all the information I could from all of the postings. Thank you everyone. I did go with my primary doctors advice and called UPenn and scheduled an appt with a gastro intestinal disease doctor, I also got another Neuro on my own for a second opinon. The first did not give me any answers as to what else could be going except a script that read Folgard and neuropathy written underneath… I am just hoping to start feeling better and have a handle on my health
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October 15, 2011 at 11:57 pm
I understand our perspectives and opinions may differ. We can’t help that. And we will sometimes disagree. We can’t help that, either. But we can treat each other with as much compassion and understanding as possible. That we can help. I’ve been around here long enough to know where most of you are coming from. I don’t necessarily agree, but that’s not the point. This forum isn’t about me, anymore than it is about any one of you. It is about all of us pitching in to help and support each other as we each make our way through this world, suffering with a frightening and unpredictable medical condition. Put the egos aside and seek and give as much help as necessary. And remember: respect begets respect.
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October 17, 2011 at 3:55 pm
Well said Goodney!
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October 18, 2011 at 7:48 pm
My second neuro was today he saw enough to have me start IVIg next week. I went in handed him my folder of health records, let him read through everything. He informed me that the food borne illness I had can cause all of these medical issues he was looking at and that he wanted to do some testing in the office.The tests he had me perform were different then my first neuro. I didnt mention GBS/CIPD at all and after the first page of doctor notes he said seemed straight forward to him and couldnt believe I hadnt recieved treatment yet. He then went into GBS and different degrees as to which it can occur as mine appears as autonomic dysfunction. Said he had a very similiar patient that was about my age he treated 5 years back who had same medical history….Skin biopsy is going to be done on my leg in the next month….Thank you everyone for the info I will keep everyone informed….Dont give up if your searching for answers either..
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October 18, 2011 at 10:26 pm
That’s good news, Nick; I’m so glad you are now finding the help you need.
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October 19, 2011 at 1:01 pm
Good news Nick! I am glad that you found a doctor that is working with you. I forgot about the autonomic dysfunction part. I was tested for that, a sweat test and skin biopsy too. The skin biopsy on the leg was not that bad. They did it in 2 places and they healed up no problem. I was a little mad because they said the results from one of the biopsies were screwed up, so they cut my leg and it was useless, but oh well. I hope you get a diagnosis and treatment. You are on the right track!! I think that if a neuro had given me IVIG way back when, I might not have the problems I do now, so good luck!!
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October 20, 2011 at 6:49 pm
I have been searching for posts on individuals outcomes with autonomic dysfunction (stomach,hypotension) and if the IVIg helped relieve any of the symptoms? I cant find much on this
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November 2, 2011 at 7:36 pm
Well my insurance has denied the IVIg treatment so I have now appealed. Has anyone had experience in this department and the whole appeal process? I am wondering on how long it takes and what steps or other options I could do in mean time
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November 2, 2011 at 9:20 pm
There are a few other treatment options that are less expensive. You could try them while you are waiting for the IVIG approval. However, if they work, you run the risk of the insurance company saying that the cheaper options work so you don’t need IVIG.
You can talk to your dr about oral or IV prednisone. Personally, I would go for the IV as it has less side effects. Or you could ask for plasmapheresis, which I would try before the steroids. You can then get into the chemo drugs but I would only use those as a last resort if all else fails.
I don’t have any experience with appeals to the insurance companies though. I have been so very fortunate to have not had any issues with ours covering IVIG (KNOCK ON WOOD!).
I do know that usually a strongly worded letter from your dr is needed. I’m sure if you call his/her office they will know what to proceed.
What insurance company do you have? Maybe someone has gone to bat with them & will be able to offer you some pointers.
Good luck!
Kelly -
November 3, 2011 at 11:53 am
Horizon Blue Cross Blue Shield NJ PPO, I am suppose to speak to the doctor today I have been told that himself nor his staff are not the most helpful in these situations. I have contacted a lawyer and willing to push this far and as fast as possible
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November 3, 2011 at 1:23 pm
Nicksprack—
There is an article in IG Living magazine; [url]www.IGLiving.com;[/url] December-January 2011 entitled “How to Write an Effective Appeal Letter”. Maybe it will help you get the IVIG you need badly. Good Luck! -
November 3, 2011 at 1:40 pm
Hopefully it won’t be that difficult to get the insurance company to approve you. It’s usually the HMO’s that are most difficult.
Exosurf – I forgot about that article. It’s a good one!
Kelly
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November 29, 2011 at 8:55 pm
I was just reading what you have been through – sounds kind of similar to my issues.. I am still undergoing testing,I am currently a medical mystery, as I am losing function in my hands quite rapidly now. I have seen GI’s and neuros .. no one can figure it out as of yet. I still have the GI issues and have lost A LOT of weight. Do you feel like you are hungry all of the time? I feel starving ALL the time! Did you do the IVIG? Hope you got treatment and are doing well!
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November 30, 2011 at 5:02 pm
I still have yet to recieve the IVIg the insurance company wont budge on the issue . I had a skin biopsy done last week, to check for inflammation awaiting results now . After doing my research I had come to the conclusion that the if what I had initially suffered back in august was a gbs attack that affected my autonomic system primarily that I may be “stuck” with my current condition. I asked the neuro last week honestly if he even believed there would be a benefit to IVIg at this point given the time period ( 4 months) that has passed he said “no”. From my understanding at this point if the biopsy comes back with inflammation it will be most likely CIDP, insurance will not be able to deny. If it comes back negative that means the “gbs attack” had taken place in august and at this point I should be recovering. Persistent symptoms do not mean CIDP the persistency would be do to the nerve damage after the initial attack. If your onset is within the past month id advise you to push for treatment as soon as possible and do any test that is required to get dx…….. I am down 40lbs and developed a thrombosis recently which my urologist said to soak with a warm cloth. I have to go to my GP and get my blood checked out make sure everything is ok. I made an appointment at John Hopkins just to see if they could shed some more light on issues also. And to answer your question about hunger I do not experience hunger at all mostly just pain and discomfort from eating very small meals.
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November 30, 2011 at 9:39 pm
wow, well I wish you luck!!! I hope they can find something that insurance will not only cover, but that will also help you! Did your symptoms come on suddenly and then not progress after that point? It’s been about 4 months for me as well, though My symptoms continue to worsen and worsen, now I have visable atrophy in one hand and minimal in one leg , ugh no fun. I hope you see improvement soon, thanks for taking the time to reply!
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March 3, 2012 at 2:47 am
I did receive to ivig after all for 5 days straight on week of Christmas. At this Point I would say that ivig was unsuccessful . I have tried changing diet etc to help with energy nothing seems to really do trick. Also been getting done a monthly AFT test my last one came out much worse then previous months so I go again next week. The nuerologist also believes that I may some more just POTS with some ear issues and balance vertigo dizziness now occurring. I have scheduled a number of different tests regarding hearing and balance. Has anyone gone through anything like this the hypotension I feel has decreased but now I have more of “exhausted brain” feeling daily. Fatigued thinking is more way to think … More I speak or do a visual activity the more dizzy and fatigued I feel. It’s different from my original onset. It’s been 8 months since the first onset and I continue getting numbness and my stomach is still an issue. Is there anyone who can recommend a world rebound doctor for gbs/CIDP I’m at my wits end here willing to travel anywhere to get more insite and what else I can do if anything besides my wait and see rhetoric from my current docs
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March 3, 2012 at 2:24 pm
Contact Dr. Dyck at Mayo in Minnesota.
This is the phone number, to make an appointment at Mayo in Minnesota:
507-538-3270
7 a.m. to 7 p.m. Central time, Monday through Thursday
7 a.m. to 6 p.m. Friday -
March 3, 2012 at 4:29 pm
Nick,
A 5 day treatment may not be enough. It wasn’t even close for me. But both ivig and extremely high doses of methlprednisone for the first 12 weeks made a difference. It took time for me to notice the improvements but it was within a month. There’s someone else in the forum w/ gi issues. Pelzitier86. Fabry Disease was something her doc was looking into. They have a website, a good one being fabrycommunity.com. I know that your searching for answers. She is too. As am I. Keep intouch.Susan
PS there’s a list of the best gbs/cidp doctors on this website maybe one is near you -
April 13, 2012 at 1:50 am
Nick- sorry to hear that it is still giving you trouble and no relief with the IVIG… i also recieved my loading dose of IVIG the week of christmas.. i had mild improvement after the 3 day loading dose, but then thought it must just be placebo effect since it was such a mild difference (thought it was all in my head 😉 I had the 2nd round of IVIG and it was a miracle!!! Everything went almost back to normal.. i was told it can take up to 5 treatments to have an effect.. I hope things are going well and you have found some answers and treatment that is effective!
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May 29, 2012 at 12:30 am
Hi Nick-
I hope you are beginning to feel better at this point. So much of your story I can relate to. I do not have the stomach issues, but I do have everything else you are experiencing. I am also in the tri-state area and searching for a doctor who can help me. I have been seeing the “top neurologist” at University of Penn, but although he said I have GBS he said it is a mild form and made me feel like most of what I am experiencing is in my head. I have been bed ridden for 4 months at this point- going from a very active 29 year old in excellent health to having difficulty picking my child up from his crib. I have turned to this web site looking for answers… I posted about my experience earlier today asking for suggestions. Have you had any luck with any doctors in our area? Have you started to have any relief after the IVIG treatments (I am afraid I too and to far past the point where this will help.) -
May 29, 2012 at 2:36 am
Wish I could be more helpful but here’s my current situation. Had the ivig one treatment, and skin biopsy back in December at Columbia Presbyterian under dr. Daras. The man may be good in his field but common decency he and his office lack. Pretty much you will get the runaround from majority of doctors you see has been my experience so far. The jfk neuroscience center is where I’m at now under dr. Rosenberg he is good but tough to get in to see him. At this point I’ve had 4 AFT tests done all very abnormal but skin biopsy was negative for inflammation. Had rotary chair and vemp testing done also abnormal, they call it vestibular testing. Mri of brain is normal, so a recommendation of vestibular rehab was given. Was on mestanon was useless to me. I wrote down current symptoms in my phone other day so when he calls to review a sleep study I can tell him recent symptoms. Here’s my list
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May 29, 2012 at 2:41 am
Headaches
Lightheaded
Prolonged talking lightheaded fatigued
Hands tingling
Calves quad arm constant twitch
Teeth pain
Pressure on head
Walking on a boat
GI issues
Muscles ache
Constant cold feeling worsens with symptoms
Urination frequency unusual clear
Eye issues dry left eye blurr -
May 29, 2012 at 2:52 am
Autonomic dysfunction is a difficult field for most of the neurologist I have seen and do not see it very often nor know a good plan of action or treatment for it . Hypotension is rough to deal with keep fluid and salt intake high and stress way low. No caffeine or stimulants even diet soda caff free makes me feel bit wacked out. The twitching is annoying but u seem to get used to as time goes by. Been a rough 10 months for myself I am still looking for best treatment and course of action and so are the doctors. John Hopkins is good but lack a real autonomic specialist ….. If your motor function is your greatest concern JFK or nycp should be able to get answers. I have eased with doctors over past two months hoping time and good diet rest would prevail …. I can’t say much has changed and feel like there are still on going issues. If you have any questions feel free to ask
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August 27, 2012 at 7:15 pm
Anyone have any luck with Tri State area doctors ?….I have been at JFK nuero center for past 8 months getting nowhere with doctor due to his amount of patients, its like I start from scratch each time I go. I am suppose to be getting a referral for mayo clinic due to my ongoing autonomic dysfunction and weakness. Just this past month its been a full year since the first onset, I had only a weeks worth of IVIG done back around Christmas . I would like opinions from members if they believe I should fight to go on a longer course of IVIG to see benefits? Also can anyone recommend supplements or remedies for helping with daily living tasks (energy at work, problems sleeping)?
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April 1, 2015 at 7:42 pm
Old post but I am back hoping for advice I just started IVIG again 150 grams this week 30 grams a day. My neurologist has reclassified me under CIDP now, so I am open to trying it again. I got slammed Yesterday with a migraine that wont quit after the infusion,I have been prepping with the Benadryl and Tylenol prior and Tylenol after as well. I was ok day 1 slight discomfort but day two I believe my infusion rate was 150. By night time my head felt like it was going to explode ( still does ). Looks like the brand is Octagam as well if that helps? Any suggestions
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May 1, 2015 at 11:28 pm
Hello Nick,
I am sorry that I did not see your post earlier. It is likely the infusion rate was too high. The rate is a rather individual thing. I know people who can tolerate 250 ml/hr and others who struggle with 75 ml/hr. I tried one time to rush things at 200 ml/hr. I got a nasty headache during the infusion. Next time, have your maximum rate be 100 ml/hr and see how you do. The Tylenol and Benadryl are good ideas, but make sure that you are well hydrated. And not during the day of the infusion, but a day or two before, during, and for a day or two after.Godspeed with the next treatment,
MarkEns -
June 4, 2015 at 7:05 pm
Get a spinal tap.
One curious thing I noticed about my CIDP is that I get 4-5 minutes, when wake up and walk around in the morning, without motor/sensory neuron dysfunction in my legs. Previous damage is noted, but isn’t this odd. CIDP for 21 years now. Just sayin’.
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My story…
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May 6, 2010 at 6:48 pm
Hi everyone. I’m new on here and this sounded like a good thread to jump in on.
I had GBS almost three years ago. I was walking across the yard on a Saturday and got this incredibly heavy feeling just wash over me. over the next week my strength started to go and i started to get prickly painful feelings in my hands, feet, and especially mouth. I remember the mouth the most, because I lost all sense of taste, hot, cold, and texture. I went to the first ER and they dismissed me as having anxiety. Pshhh… they were full of crap.
The next day, i had just gotten off the phone with my mom and was brushing my teeth. The spit started to fall out of my mouth and i looked in the mirror to find half my face paralyzed. Needless to say, I freaked out and called my husband to come home and take me to an ER. A different one this time. They diagnosed me with Bell’s Palsy until i could get to a neurologist. Once I saw her and had the test with the electrified needles (forgot what it’s called) I was officially diagnosed with GBS and rushed off to the hospital. I stayed there for 9 days and had five rounds of plasmapheresis. I was barely walking when they released me.
I still remember how scared I was to feel all of the ability to move, just leave my body. I also remember how weird it felt to rejoice that when I could raise my hands just a little bit. It is such an odd feeling to rejoice over something that you KNOW you could do just three short weeks before. I also remember the drive home from the hospital- I have never been that overjoyed to be able to feel the fresh air and be out of the hospital. I made my husband keep the windows down the whole way home…
It took me about three months to recover, but I made a good comeback. I was even able to run again.
Last Christmas I came down with a case of Shingles and started experiences residuals for the first time. It absolutely scared the crap out of me because I was worried that I was coming down with GBS again. After a lot of experimenting and talking with my neurologist, I’ve identified my triggers and try to prevent flare-ups. I’m not perfectly recovered, but I am always so grateful that my battle with GBS has been short and sweet compared to so many on here. I might never completely recover, but I still count it as a victory.
Now I’m using my experience to drive me as I try to regain my health completely and go to school for nursing.
I will always use this experience to enjoy the chance at life that i got.
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May 7, 2010 at 8:57 am
Thank you for sharing you story. I hope you continue to improve and go on to nursing school. You will be able to keep the docs straight when it comes to GBS and CIDP. Remember, they will only be practicing medicine, you lived it.
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May 8, 2010 at 1:46 am
I agree with Jim. When you mention CIDP to most doctors, they look at you with glazed eyes. It is the under dog of DX’s, especially in the ER! When a young patient comes in with certain symptoms, say double vision, you will be the one assuring that all the bases are covered by running the scans for possible strokes, and throwing in a neuropathic blood screen for the hell of it! That would have saved me my 8 years of hunting for a diagnosis. I spent 3 years ruling out a CVS (cerebral vascular accident) when it was Miller Fischer. Since it went untreated so long, it manifested into CIDP. But hey, I didn’t have a stroke!:cool:
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my story
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February 4, 2008 at 1:56 pm
Hello, all – this is my first time to post. I’ve been reading on the forum for several weeks now and felt compelled to tell my story. On Nov. 3, 2007 I woke up with tingling in my hands, feet and scalp. I went to the doctor, he told me I was depressed and prescribed an anti-depressant. Ended up at the emergency room that night, was sent home, this time they told me I had a migraine. Back to the ER on Sunday, did a lumbar puncture, protein level was normal but they admitted me, thought I had West Nile Virus or Lyme Disease. By Tuesday I couldn’t move, not even hold my head up, eyes wouldn’t blink, doctors still did not have a diagnosis. I went into respiratory arrest Wednesday morning at 2:00. Woke up in ICU on a ventilator and finally was diagnosed with GBS, Miller Fisher variant on that day and treatment was started, IVIG. On that Wednesday I couldn’t even raise my eyebrows, blink my eyes, or move anything but one finger. But, here’s where it gets good – by the next Wednesday, 7 days later, I was off the ventilator, I could raise my right arm and could move hands and feet. I was moved out of ICU on Friday and then to rehab on Monday. By Wednesday, 2 weeks after being diagnosed, I was walking with a cane. I got a pass out for Thanksgiving Day and was released from the hospital on Saturday, exactly 3 weeks after it all started. It is now 3 months past, I started back to work the 2nd week of January, I work part time in the school district in my town and I teach private piano lessons in my home in the afternoons. I play the piano in my church and I started back there the last Sunday in Dec. The only residual symptoms I have are the tingling sensations in my hands and feet when they get hot, mostly at night. I have been released from physical therapy and from the cardiologist. I had hospital personnel (nurses, therapists, doctors and administrators) come to my room and tell me that I was a modern day miracle and I believe it. There were people all over the country praying for me. Even my neurologist said there was no explanation for my recovery. But I knew the explanation. God healed me.
God is good, all the time. -
February 4, 2008 at 6:04 pm
I too had Gbs ,started on October 13th of 07.I too had people from all over the country praying for my recovery. Two churches in Az, and 4 churches in Mi,
It has been 16 weeks now and basicaly I am healed except for my toes are 10% numb and the balls of my feet are sore in the morning and at night.
I didnt start to walk until 8 weeks out. I never made it to the ventilator As far as I;am concerned my healing was fast because of answered prayer.I was at a hockey game saturday with my freind who had it at age 40 and he was inches from a vent and he recovered completley in 3 months.Their was a guy at the game at the end of the row who got it in 2005 and still has residules. Whats the chances of that happening?! His never progressed past his feet and hasnt had much healing. He is about 63 years old. Who knows or could say why some heal fast and some heal slow. Its all in Gods timing
Take care
Ron -
February 5, 2008 at 9:05 am
🙂 congradulations on making such a good recovery. Happy stories are good to hear, too.!:D
Alma
GBS-MFv 1993 and 2004
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My story
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July 29, 2006 at 11:54 pm
My Story:
Hi Everyone, This is my first post and I would like to share my story with you. Hopefully it may bring hope to some of you that may be suffering right now. I am a 23 year old guy, have always been healthy, a bit overweight though. My case all started in mid april of this year. I had a sore throat which turned into an ear infection. Saw the doctor and he gave me a prescription, About a week later all was better, or so i thought. About 2 days after I got over the ear infection, I began to get numbness in the tips of my toes and fingers, i was also noticebly tired after doing anything. A day later the left side of my face began to droop and the other symptoms continued to get worse. The third day the face droop became much more noticeable and my g/f was very worried. Her mother is a nurse at a local hospital and my g/f and I followed her mom to work that night so that a friend of her mothers, also an r.n., could look at me as my symptoms sounded alot like something her brother had. She looked me over and thought i may have gbs like her brother, she told me of his 4 month struggle and I was genuinely scared to death. The next day my dad and I went to the ER, the ER doctor diagnosed me with Bells Palsy and gave me a prescription and sent me home and told me to check in with my family doctor in a week. A week went by and I was getting worse, my family doctor saw me and told me to go to the hospital so that a local neurologist could see me immediately, if i wasnt a patient at the hospital it would have taken 2 month for him to see me. My mother and I went to the hospital and that night the neurologist saw me and did an LP and diagnosed me with GBS. That night would begin the first of 30 plasmapheresis sessions. I spent a week in Intermediate care and 3 weeks in therapy at the hospital, I missed my college graduation while in the hospital 🙁 . I gradually got worse in the hospital, about 2 weeks in I had very very little strength, was walking w/ a walker when i had the energy to do that. After that i gradually got better with each plasma treatment. After a month in the hospital I was released, and for the next month I did outpatient physical therapy as well as more plasma sessions. About a month after the plasmapheresis sessions I was about 85% of my pre gbs self. At this writing, 3 months after the initial symptoms i am 100%. I know that my case was milder than most, and my recovery time quicker, but I wanted to share my ordeal and hopefully bring some hope to those going through it now, things will get better, you will recover and you must think positively every day. I want to thank you for reading this and letting me share my situation with you. -
July 30, 2006 at 6:12 am
Hi Robb,
Congradulations on being 100% recovered. Much success in you life. I hope you too find support from this site.
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July 30, 2006 at 8:23 pm
Welcome to the forum Robb and congrats on your recovery.
Jerimy
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My Story
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June 15, 2006 at 5:45 pm
Hi all
My name is Mel. I came down with GBS on Dec 19, 1998. I will never forget that day for it was my son’s 2 year birthday.
That morning I woke up with the feeling of a bad case of the flu, plus the lack of feeling on my left side and the inability to swallow.
That evening my wife’s parents came over for the birthday party and I was unable to get out of bed. After they left my wife and I decided to go to the hospital.
We called 911 thinking it might be a stroke, and was wisked away to the hosp.
The first Doc I saw said I had an inner ear infection, thus causeing the lack of balance and was discharged with several medications to take(couldnt swallow?)
About 2 days later after no improvement we went back the hosp and the PA said I had Bells Pasley, but just before being discharged another Doc came in and did a spinal tap,
Next thing I knew I was ICU. I was there for 3 days. then sent to a regular room for 3 days, and then sent to a rehab hospital for 2 weeks.
After haveing a feeding tube put in I was realsed to go home, but 2 days later the feeding tube site got infected, and back in the hospital for another week.
A Doc came in and said that the best way to get rid of the infection was to pull the tube out and massive amounts of antibiotics.
When he pulled the tube out I screamed so loud (man it hurt) that it did something to where I could swallow again.
I have read several of the other peoples story, and I feel I was lucky (?).
It was determined that I had the MF variant. I was never on a vent, or paralyzed.
All in all I’m kinda glad I got GBS. I had been doing drugs for the last 10-15 years, and it was like God saying “I’m done messing around with you, but I’ll give you 1 last warning” IT WORKED I haven’t even wanted the stuff since.
I’ve always been a jokester, so while laying in bed in the Icu, bored out of my mind, I would concentrate on lowering my heart beat so the alarm would sound and the nurses would come running in. That happened several times untill I “fessed up”.For some reason they weren’t to happy.
It’s been almost 8 years now and I still have the numbness on the left side, cant stand the cold or brezze, and cant judge the temp of different thongs on that side.
But thinking of where I’d probably be if I was still using the drugs, I’m alot better off now.
The road to recovery (if you can call it that) has been a long, sometimes bumpy, and somethimes smooth road. but it has been something I have learned to deal with and accept, and I could never have done it without my wife who “held” my hand all the way -
June 15, 2006 at 8:37 pm
Mel,
welcome to the site and glad to hear that your doing well now.
Jerimy
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