March 14, 2017 at 10:22 pm
I was originally admitted to Fountain Valley through the ER, where they suspected GBS and started me on IVIG immediately. They didn’t diagnose me with GBS until a week or so later when they ruled out other possible disorders/diseases. I also had a round of plasmapheresis, which kind of defeated the purpose of getting IVIG in the first place. I progressed regardless and was then sent to UC Irvine for higher level of care. I’ve had numerous neurologists work on my case, including Dr. Goyal. She works with Mozaffar. They are both highly respected individuals and I don’t mean to discourage you from seeing either with my own experience. I think they’re both great; my story just serves as a reminder that it isn’t one size fits all when it comes to treatment for the same condition. The neurologist who followed me last at the subacute facility is Dr. Douglas Chang. His office is in Foothill Ranch. My insurance doesn’t cover him outside of the facility, unfortunately, so I had to find yet another neurologist to work with and my appointment isn’t until April. I will keep you posted about this new neurologist if you’d like. I reside in Orange County. Let me know if you need anything! I’ve worked with several different neurologists as I’ve been pushed around to different facilities throughout Orange County and can personally tell you which ones are good. It’s just a matter of whether your insurance will cover seeing them at their office or not. Personal email: email@example.com
JamieMarch 14, 2017 at 1:56 am
The neurologist who started me on Prednisone also prescribed Calcium and Vitamin D supplements because long-term use can cause a deficiency and I was confined to my bed for almost a year. You’re in the normal range, but if you’re really concerned about it, you can always buy OTC supplements.March 14, 2017 at 1:39 am
Sandra, are you referring to Dr. Mozaffar at UCI? He was following my case and advised my new neurologist (I had moved to a subacute facility which is why I wasn’t seeing him anymore) against starting me on Prednisone because he didn’t believe I had CIDP. My new neurologist decided to start me on Prednisone anyway and it’s the reason why I’m walking today. I remained so stagnant before and receiving monthly IVIG infusions simply wasn’t enough to get me walking. Sometimes even experts don’t know the best course of action since it affects everyone so differently. Getting different opinions isn’t a bad thing. I really hope you’re able to get an answer and receive a course of treatment that works for you. I noticed that since tapering from Prednisone, I’ve started feeling a bit weaker when it’s closer to my IVIG infusion due date.March 6, 2017 at 10:55 pm
Sorry to hear, Bryan! I hope you recover quickly! It varies for everyone. I came down with a cold not too long ago and definitely noticed that I was more fatigued than I normally am when I do get colds. However, I was lucky and recovered within a few days. I know for some, when they do get sick, it seems to be prolonged and more intense than before, but thankfully, for me, it was short and just a tad bit more intense. I didn’t experience any more pain than usual. I hope that has subsided for you and you find relief. Do you still receive monthly IVIG treatments? It should help with the regression. All the best!
JamieFebruary 28, 2017 at 10:58 pm
@arielsstars While your input is valuable, I think it’s best he consults with his neurologist before reaching that conclusion as he did mention that the neurologist is planning to taper him down. Self-diagnosing is dangerous if you don’t know what you’re doing and can be detrimental to your recovery if tapering is done incorrectly. Hopefully Bryan and his doctor can figure out what will work for him as well.February 25, 2017 at 3:45 pm
I was diagnosed in February 2016 and released from the subacute facility in January 2017. My gait was extremely unstable, like a baby learning how to walk for the first time. I was very wobbly and couldn’t walk long distances. I also had somewhat of a limp going on and my balance was off. I continue to received IVIG treatments every month and am still on Prednisone. Both have really helped along with staying active and constantly working out. Everything from my balance to my gait has gotten a lot better. I can almost run again. It just takes time to recover, so have patience and stay positive and motivated. I’m still unable to sit on the floor unless I have something behind me to help me lower myself. Squatting is unbearable as my quads are extremely tight, but I stretch regularly to try to regain flexibility. My knees and ankles are still weak so I have trouble with stairs and sidewalks, but it’s getting better. The length of recovery is different for everyone. Listen to your body and live as healthy as you can. Rooting for you!
JamieFebruary 22, 2017 at 12:08 pm
I’m 29 and was diagnosed with CIDP last year. Since you were working before, I suggest you apply for EDD and SS. The worst thing that could happen is they deny you, in which case, you can appeal. Sometimes people have to appeal a couple of times before getting approved, so be persistent. If social security denies you or they give you under a certain amount, you can also go to your local office to apply for supplemental income. There are so many government assistant programs out there that those with disabilities can apply for, but the information isn’t put forth for obvious reasons. I know people who work in SS, so I have insider scoop that most wouldn’t be aware of. Hope you find this information useful and sending positivity your way!
JamieFebruary 19, 2017 at 5:30 pm
@tallison I think it’s also important to remind those in your program that textbook knowledge =/= real first-hand experience with the disorder. I’ve had people say that recovering from it and walking again is not a miracle because it’s the natural progression of the disorder and that we are not considered survivors because it’s not a serious disorder in which death occurs. I’d like for those people to walk a day in our shoes because I think they’d think otherwise if they had to go through the hell we went through and back. Some people are afflicted to a greater extent than others. I had days where it didn’t look so promising because I was a short-term quadriplegic that went down to 90 lbs. and kept getting infections. Yes, most people don’t die and yes, most people walk again, but most people also experience residual side effects for the rest of their lives and some people have to rely on assistive devices for the rest of their lives as well. Some of these responses have come from people in PT and OT school, so that’s a pretty scary mindset to have coming from someone who is supposed to have more empathy and compassion than such negative responses. That was off on a tangent, but I think it’s a really important message to relay. 🙂
1. Does individual have difficulty or require assistance performing self-care tasks? If so, how? (personal hygiene, bathing, toileting, dressing, feeding)
The initial onset occurred at the end of January 2016 and I lost the ability to walk a couple of weeks later so I had to start using a diaper and needed help with bathing. By February 26, I became paralyzed from the neck down, so I required full assistance for performing all self-care tasks you mentioned.
2. Does individual require the use of adaptive equipment for functional mobility/transfer? If so, what kind? (cane, walker, wheelchair, scooter)
In the beginning, I used a walker for a couple of weeks before my legs became too weak. When I became paralyzed from the neck down, they would use a hoyer lift to transfer or a sliding board. I had a power wheelchair for a short period of time in April 2016 that I could control with my head. I now walk without much assistance, but for longer distances, I do bring a wheelchair with me as I fatigue easily.
3. Does individual have difficulty or require assistance feeding self? If so, how? Is feeding tube required? (utilizing utensils, chewing, swallowing)
Towards the end of February 2016, I had to rely on others to help feed me since I had no use of my hands, with no food restrictions. In the beginning of March 2016, it started affecting my respiratory system and I was eventually trached on March 10, after being on a ventilator for a week prior to that. I also had a feeding tube at this point.
4. Does individual have difficulty maintaining prior role function at home, work, school, and within the community? If so, how? (parenting, spouse, child, sibling, boss, co-worker, coach, choir member, teacher, student, secretary, etc.)
I was in hospitals and lower level of care facilities for 11 months, so my social life was completely put on hold. I couldn’t work and I still can’t work now due to fatigue.
5. Does individual have difficulty managing medication/health care independently? If so, how? (distributes own medication, schedules doctor appointments, drives self to doctor, etc.)
I was completely dependent on others to help me out until June/July 2016. When I regained mobility in my hands and the trach was removed, it became easier to handle everything myself. Now that I am back home, I can do everything on my own.
6. Does individual have difficulty planning or preparing meals? If so, how?
7. Does individual have difficulty shopping independently? If so, how? (grocery store, gas, clothing, supplies, etc.)
8. Does individual have difficulty maintaining housework, laundry, yardwork? If so, how?
9. Does individual have difficulty managing finances independently? If so, how? (writing checks, balancing checking account, paying bills by check/online)
No, not now. When I was still in the care of facilities, my family would help me with paying for bills that were due.
10. Does individual have difficulty falling asleep and/or remaining asleep throughout the night due to symptoms? If so, why? (pain, sensations, etc.)
GBS causes insomnia due to the tingling sensation and numbness. Paralysis makes it hard to get comfortable. Also, when I was ventilated, it was very noisy, so that was another issue.
11. Does individual have difficulty or notice an increased demand to rest due to symptoms? (nodding off, napping, relaxing, short of breath, etc.)
Not when I was paralyzed. When I started using my arms again and could use a wheelchair to get around, my arm strength was weak, so I could only wheel myself around for short distances. When I was learning how to walk again in December 2016, there was shortness of breath and I could only walk a few steps before getting tired.
12. Is individual currently employed, retired, or attending school?
13. If formerly employed, did the condition/symptoms require a surrender of position, early retirement, or leave of absence from work/school?
I stopped working one day before being admitted to the hospital, which had nothing to do with my sympmtoms.
14. If currently employed/attending school, does the individual have difficulty fulfilling job/student requirements? If yes, how?
15. Does the individual require assistive devices or modifications to complete tasks or activities at work, school, home, or within the community? (Assistive devices include a reacher, dressing stick, button hook, sock aide, toilet seat riser, etc.) (Modifications include grippers for knobs, grab bars, ramp, handrail, hand held shower head, etc.)
I still use a wheelchair if I know I’m going somewhere that would require a lot of walking, like Disneyland.
16. Does individual continue to participate in leisure activities? If so, what kind?
In December 2016, I was able to start going out to eat, to the movies, etc. for 4 hours at a time. That’s how long the facility allows you to leave for.
17. Has the individual noticed a decline in their ability or endurance during leisure participation? Yes, endurance is definitely affected. It gets better with time though.
18. Does the individual feel they have a strong personal support system? (family, friends, co-workers, church members, etc.)
Yes, I am very lucky to have very supportive family and friends who have helped me every step of the way and continue to now.
19. Does the individual participate in activities requiring social interaction? If so, what kind? (family/friend gatherings, church social, support group, etc.)
Yes. I attended holiday events even when I was at a subacute facility during the holidays. I also went out for my birthday. I think I make more of an effort now to go out with family and friends.
20. Does the individual attempt to maintain social relationships/contacts? If so, how? (phone call, text, email, in-person, social media, etc.)
During the time I was away from home, I would have many visitors. I also kept in contact with people through text and social media with the help of others. Video calls were made once I was further along during my recovery.February 12, 2017 at 3:19 pmFebruary 11, 2017 at 3:00 am
May I ask your age?February 9, 2017 at 6:29 pm
Bryan, do you mind if I share your experience on my blog for more exposure? If you have any photos of yourself before, during, and after that you can send, that’d be great too! You can send it to firstname.lastname@example.org if interested. My blog is jamiegbs.blogspot.comFebruary 7, 2017 at 4:39 pm
I was initially diagnosed with GBS in February 2016. Throughout my progression, I relapsed a few times and lost some mobility again after regaining it back. They did more testing and diagnosed me with CIDP in October 2016 and started me on Prednisone (corticosteroid) in addition to my monthly IVIG treatments (5 day course). It all definitely helps. I’m fully functional now, just have trouble with stairs and some tightness in my legs. Yes, be very assertive. I feel like they’ll take you more seriously when you’re constantly on top of them and making sure you get the proper treatments asap before things get worse or become irreversible. I feel like a lot of people in Florida have trouble getting proper care because they are oftentimes just brushed off like it’s nothing serious. Ugh. Here’s to hoping that’s not the case with you and that everything goes smoothly!
JamieFebruary 7, 2017 at 4:16 pm
It’s a smart idea to keep your appointment and to journal your progression. It is possible to detect depending on one’s situation as GBS/CIDP affects each individual so differently, it’s really hard to say definitively. In my case, however, though I was no longer showing symptoms of anything and slowly getting better, I did have another spinal tap, which showed my protein levels were off the charts, so I’m on something to help suppress my immune system because it’s still going haywire. Hope that helps!
JamieFebruary 7, 2017 at 12:16 pm
Jim provided some great information as usual. Keep positive and remain strong! She’ll make a full recovery! Sometimes GBS just has to take its course. I had several 5-day courses throughout my care and it did nothing for me, but it was definitely GBS as they ruled everything else out. Plasmapheresis may be another option, but it is more invasive as it requires a Quinton catheter to be placed by the neck or clavicle for treatment.February 7, 2017 at 11:55 am
@Nvarennikov May I ask where you are living? Medicaid can be a bit tricky when it comes to getting approval to see a neurologist. It can take months even if you’ve been diagnosed with GBS/CIDP. Your best bet would be to go to the ER if symptoms get worse because the last thing you need is to be without medical attention should it progress to your respiratory system. Like Amarie said, push them to get these tests done asap to rule out or confirm GBS. Keep us updated! Hoping you get answers and the right treatment soon!