Undiagnosed – unusual deterioration course
February 6, 2017 at 11:09 am
Firstly, I have not received a diagnosis as of yet. As such, my problems could have multiple causes. I was hoping to find anyone who had a similar disease course to what i am experiencing. I know i cannot be diagnosed over the internet, I was just wondering if anyone experienced similar symptoms and time frames.
My first episode began on january 15th 2016. I had a fairly unspectacular respiratory infection a few days prior to the 15th and didnt think much of it. But on the 15th, my finger tips on my left hand started going numb. I thought i had a pinched nerve as a result of poor posture from hunching over my computer. Evey day the numbness seemed to spread to the rest of my hand, and within three days i now had it on my right hand as well. I was a little concerned but figured i just needed to rest my back. That didn’t work. Soon the numbness began to take the entire right side of my body, and while it had dissipated from my left side, it was replaced by loss of motor skills. Within a few days I couldn’t sign my own name and my left leg was not working the way it should and i was extremely fatigued no matter how well i rested. I decided i should see the er. They were more concerned with my respiratory virus than my neurological symptoms, gave me some antibiotics and prednisone and sent me home. Two days later, i lost almost all control of my left leg and my arm was almost useless, while my right side was numb (similar to brown-sequard syndrome but im not self diagnosing merely describing). So back to the er i went. I was told this isnt a medical emergency and come back if it gets worse. It was worse the next day. So i went back, at which point i was asked not to come back for this issue. I asked the doctor at what point i should come back, what would constitute a medical emergency? She merely repeated that i didnt need to come back for this issue. I asked her sarcastically “even if im 100% paralyzed?” She just repeated that i didnt need to come back for this issue and sent me home. I was in shock. I figured i was dying or something and no one would help. I saw my regular pcp who said it could be guillain-barre but that he couldnt be sure. He said he would contact a neuro for me. He never called me back. So i stayed at home laying in bed while my body gave up on me. About 2.5 weeks after the initial numbness, i had a break down while putting my kids to bed. I didnt let them see it, but i was convinced i was going to die. I had a heartfelt sob with God and lay down. About 20 minutes later, i went to get up, and found my leg working. I wasnt limping anymore, but the numbness was still there. I was excited about this and hoped that I would continue to improve. I did. Within the next four days I went back to completely normal. You couldn’t even tell i had been sick. I was elated and attributed it to a mild case of guillain-barre. I had gotten lucky.
January 29th 2017
Again i had a minor respiratory illness. I went to the store at 1:15 in the afternoon. It was a little chilly out so i had the heater in the car blowing on my feet. I noticed that my left foot wasn’t getting warm. I thought that was odd but I seemed fine otherwise. By the time i got home, i noticed the strange sensation had climbed up my leg. I did some personal testing and found that anything cold pressed against my leg felt excrutiating. I was concerned, but tried to stay positive and relax. The symptoms continued to spread. By february 2nd my left side from the chest down was now 90% numb. My right leg was beginning to feel uncoordinated, but my arms and hands seemed ok. I decided to get a jump on this and again headed to the er. They were ready to send me home the minute i walked in the door. I pushed, explaining what had haopened last time. Eventually, because i had a minor back ache, they decided they would give my spine an MRI. It came back normal, but because i was in obvious distress, the er doctor sent me home with a methylpred tapering dos-pak “in case there is an unseen pinched nerve”. Now I’m on the 6th of february and my numbness has spread to both sides of my chest and is now climbing down my right leg. My right leg is virtually useless. I can very slowly limp around the house, using my right leg in its locking position as a crutch. I cannot wiggle my toes and have only minor use of it at the knee. My arms and hand remain mostly unaffected aside from slight numbness that has been slowly creep down into them from my chest, but has not yet gone beyond my elbow. So again I am faced with riding out the symptoms with hope that they will get better on their own.
I know cidp typically comes on slowly over the course of 8 weeks. But i also know there are acute cases of cidp, and wonder if that is what i may be dealing with. I know GBS is typically not a reoccuring problem, though there have been some cases of it. It just seems odd that i had a respiratory problem right before both incidents. As rare as it is, i suppose it could be a mild GBS, and I just happened to have caught it twice. Or it could be something different altogether. I was just wondering if anyone who had been diagnosed with cidp had experienced a similar flare course. I get mixed information as to whether cidp relapses go away on their own without medical treatment. I know i need to get medical attention, and i am working on that, but no one seems concerned about it. If you or anyone you know has experienced similar problems please let me know. Thanks.
February 6, 2017 at 12:56 pm
GBS and CIDP tend to be bilaterally symmetric, so your pattern would be atypical under that diagnosis. Whatever it is, I think you need a neurologist. Primary physicians and ER doctors generally cannot diagnose neuropathies. I don’t understand why your primary didn’t refer you. You should get a referral as soon as your primary determines that your problem is neurological.
February 6, 2017 at 1:06 pm
Yea, he’s not the greatest, but he’s the one approved by medicaid. I don’t know why he never responded. I’m now attempting to get back in to see him. I’m just concerned about the “what if” of this becoming more serious before I’m able to see him. If it were guillain-barre isn’t that considered a medical emergency? Everything I’ve been reading says get to the ER if you’re experiencing symptoms of xy&z. Hopefully you’re right and this isn’t something as serious as GBS or CIDP. Thanks.
February 6, 2017 at 2:40 pm
Guillain-Barré is considered a medical emergency because it can cause impairment of breathing. In some cases, the paralysis progresses very rapidly, so it is indeed a real emergency. More typically, the rate of decline is slow enough to allow time for the diagnosis to be made and treatment to be started. In any case, earlier treatment generally leads to better outcomes.
Try to get a neurological examination as soon as possible. If your primary physician won’t cooperate with this, I would try to change doctors. Don’t take no for an answer. You are entitled to a competent diagnosis, in my opinion.
February 6, 2017 at 2:45 pm
Thanks, yea I’m working on it. Got an appointment with my pcp for the end of the week (earliest possible). Well see what happens. Thanks again.
February 6, 2017 at 3:43 pm
You have the right to get a Diagnostic MRI done. Change Dr’s if you have to. My PCP family dr ordered diagnostic MRI immediately in July 2015 . I was referred to Neuromuscular neurologist in August 2015 and began IVIG infusion in Sept 2015. There was never an emergency but it feels like it for sure. Demand Diagnostic MRI, protein blood test n spinal tap as you discuss your condition with Drs. It is your right.
February 6, 2017 at 3:53 pm
Yea, I’m going to see what the doctor says friday and go from there. He seemed in favor of getting me a neuro referral last time, but for whatever reason he never followed through. I never pushed the ussue with him because it wasn’t long after my visit with him that my symptoms spontaneously disappeared. I attributed ut to a mild GBS and just assumed I got lucky. Not thinking that so much anymore so this time will be different. Thanks for the reply.
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!
February 7, 2017 at 12:07 pm
Yea it has been a pain. I live in florida. Im still keeping my appointment for friday to see if I can at least get started on the process. Im keeping a close eye on my symptoms and have been keeping a journal of them since it began so i could monitor the progression. Progression seems to be slowing and I’m approaching the typical clinical nadir for GBS (assuming thats what it is). For now my left leg still works, but its getting tired of doing all the work. Ive already determined that the faintest hint of further paresis or breathing difficulties will result in a call to 911. Thanks for the response, I’ll be sure to post an update as soon as there is one, hopefully a positive one :).
February 7, 2017 at 2:57 pm
By the way, does anyone know if GBS or CIDP are diagnosable when symptoms have retreated? Assuming this were GBS and it runs it’s course without hospitalizing me or before getting a diagnosis, is there anyway to find out for sure thats what it had been once it was gone? Alternatively, if this is an acute onset CIDP, and assuming it remits without hospitalization, is it still detecable after the fact? Or do the symptoms need to be active in order to confirm it through testing?
February 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!
February 7, 2017 at 4:30 pm
Definitely, thank you. May I ask, did you end up being diagnosed with GBS or CIDP? I’m absolutely keeping the appointment. There are too many variations of neurological malfunction for me to have any clue what it truly is, especially when even the same one can hit two peopke completely differently. It’s certainly going to be a pain to get into a neuro, but I’ve got try, especially if this is a chronic problem rather than a one (or now two) off thing. Thanks again.
February 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!
February 7, 2017 at 9:31 pm
I have been through so many changing symptoms over the last year. I have seen multiple physicians since my symptoms became alarming and affecting my quality of life. I have had blood work, emgs/nerve conduction studies, brain MRI, etc… Viral/ bacterial infection ruled out. 5 hour glucose tolerance test showed a slight impairment in glucose metabolism. Not enough to treat with meds, instructed to eat a low carb diet. My concern is, the Pain /rehab doctor I saw said I have cidp based on emg results he performed, and other labs at the time, the neurologist I saw after said no, you have small fiber nerve disease, confirmed with skin punch biopsy. I was dismissed by rheumatologist, and referred back to neurologist. I was so worried that I had an autoimmune disease, she (Rheumatologist) told me I didn’t have rheumatoid arthritis and that was it. I told her how bad my facial sweating could be, and she said “you weren’t sent here for sweating”, I already knew my RH factor was negative, I was concerned with other autoimmune process.I have days where I feel OK, 600mg gabapentin three times a day, then I have what I call “flare ups” where I not only have the burning pain in toes and heel, up back of ankle, then skips up to what feels like same burning pain deep in rectum and sometimes buttock area. I know, sounds crazy, but this is no joke, very painful, then with the “flare up” my joints can ache so bad, difficult to stand from seated position, knees, hip and bilateral fingers ache and feel stiff. Had negative RH factor, sed rate normal, crp slightly elevated. My face, neck and chest sweat to where it can drip off of me. I am very intolerant to heat, but cold hurts too. I had been on Prednisone last winter for ear inflammation and that’s when I noticed how much relief I got from the aching. With all that being said,can anyone differentiate cidp from small fiber nerve disease. I know the rehab doc said I would probably need to keep Prednisone on hand, and possibly try immune suppressants and IVgg. Neurologist never suggested anything other than gabapentin. I just assumed because SF nerve biopsy was positive. I was given a 3 month follow up appointment,and thought I would wait it out, but pain is worsening. I am very discouraged. I just want to feel better and get the best treatment I can. Does anybody have any insight or thoughts. Thanks Carla
February 7, 2017 at 10:24 pm
Carla, It seems the only valid test for GBS/CIDP you had was the NCV, and the accuracy of results is subject to the experience of the analyst. There are other tests that should be done to confirm or deny the disease. Please see the following publication for an overview of the diagnostic tests involved:
If CIDP is confirmed from testing, I recommend 3-4 days of PE followed by a week of IVIg. But these are expensive treatments and your insurance will likely have to be on-board with the treatments. Too many insurance companies are denying the proven (yet expensive) treatments in favor of their profitability over our quality of life!
February 7, 2017 at 10:31 pm
Where are you located Carla? Perhaps we can suggest some doctors who may have more experience with GBS/CIDP.
February 8, 2017 at 5:53 am
Jim, Thanks for replying. I will review the links after work today. I really appreciate the help. I am located in the Akron/Canton, Ohio area. Cleveland could be an option. Carla
February 8, 2017 at 3:24 pm
Carla, I’m familiar with the area. I lived in Fairlawn while working in Barberton for three years.
The Cleveland Clinic has Neurologists specializing in CIDP:
Dr Kuenzler and Dr Levin (who I have no personal knowledge of) are CIDP experienced Neurologists who may be able to help you.
You may wish to contact the GBS/CIDP Foundation liaison in your area for additional referrals:
Akron, OH 44301
February 8, 2017 at 6:38 pm
I also live in Florida. Mine is different than yours, but what I have learned is that you really, really need to somehow go to a place where they have experience with autoimmune, neurological disorders. University of Miami, cleveland Clinic Hospital ( where I went) and University of Florida in Gainesville, are where you have to go.
MF, CIDP, GBS are all pretty rare, so even good doctors, who are not used to treating these things, will be more hit and miss. You may well end up having to go to one of those places where they deal with it regularly.
I had seen several doctors and was discharged from one hospital with no diagnosis, before I was lucky enough to get in with the experts. Literally when I hobbled in the door of the exam room, the docs first words to me were, Just by seeing the way you walk, and your eyes , you have classic Miller Fischer, but we will need to run some tests to confirm. And he was absolutely right! That after doctors and MRIs and other doctors were mystified.
You will find, when you get the right doctor, and know what it is, it is a HUGE relief.
February 8, 2017 at 8:14 pm
Jim, I am so glad I came across this forum. I have never joined a forum of any kind before, so I was reluctant/ but desparate. So glad to know there is a liaison in Akron. I am also thankful for the Overview publication link you sent. In my search, I was just getting pieces. And Robert, thank you for your input, this has been a very discouraging experience, I know I need to have another opinion, Cleveland clinic has always been in the back of my mind. I was hoping I was just “crazy” and it would go away, but after a year of multiple doctors, and very few answers or relief, it’s time. I’ve found that even my family and close friends don’t understand, for me the flare ups as I call them are unexplainable even to myself. Thank you both again,I really do appreciate the help. Carla
February 9, 2017 at 6:08 am
I’m taking a guess now, I think you have had two cases of GBS. If you had CIDP, you would have surely seen some constant improvements, relapses and deteriorations between January 15th 2016 and January 31st 2017. But you need to take care of this with medical treatment, you have no option, this is a very serious medical issue.
February 9, 2017 at 9:08 am
I suspect you’re correct. I only put it under the CIDP section because this is the second event, and as I understand it you’re more likely to get CIDP than Guillain Barre twice. But until I can get the ER to recognize it as an emergency and admit me, there isn’t much i can do. On the positive side though, progression seems to be slowing. Yesterday there was only a minor spreading of numbness, and today there hasnt been any noticeable change from yesterday. Motor dysfunction is so far still limited to my right leg. Thanks, for your input though, I am of the same mind.
February 15, 2017 at 10:07 pm
Just an update. Went to my pcp. He said it could be GBS or MS or a number of things. Said he would get me a neuro. I called today because i hadn’t heard from him and they said they were having trouble locating someone to accept my insurance. Big surprise. Symptoms still remain but progression seems to have slowed, but that could be wishful thinking. However, i came across something called Babinski’s sign. Its a fairly simple technique to identify issues of the spine and/or brain. It is supposed to indicate a problem in the CNS as opposed to the PNS. I had my wife perform it on me and got a positive reflex in both feet, even the one i haven’t been able to move since the 3rd. So now I’m wondering if it isn’t more likely to be MS related. I did locate a few case studies wherein patients had Babinski sign with GBS, though they didn’t know why this was, as it is typically a CNS damage related reflex. So for now I am still stuck in limbo. Considering another useless trip to the ER as my symptoms are certainly much worse than the first visit, but I haven’t quite brought myself to do it yet, as they have repeatedly told me this is neurological and therefore non-emergency. I’ll post another update when I know something more.
February 15, 2017 at 11:40 pm
Nvarennikov, Who is your insurance carrier and what is the policy exactly? Where are you located?
Regarding the ER: Neurological IS an emergency situation for GBS, MS, and related PN diseases! Don’t be put off by lazy ER docs who are not willing to spend the time with you to get a proper diagnosis. If you are not bleeding or have no obvious life threatening disease, many ER docs will often just move on to their next “assignment”. Take friends with you who will advocate for you. The squeaky wheel gets the…
February 18, 2017 at 9:51 am
I have medicaid through humana. However it’s barely medicaid. Its the medically needy variety, basically catastophic insurance. Unfortunately i called them yesterday to change my pcp and they are having a disconnect with medicaid. Humana is saying my policy was cancelled some time ago, even though they were just billed and accepted billing for my er visit on the 2nd. So I’m in limbo. However, symptoms are now retreating slowly. Feeling is returning to various sections and my right leg has regained a little strength. I am still looking into this and need to get a diagnosis if possible, especially if it does end up being CIDP/MS or some other horrible thing that will require regular medical management. Once i get medicaid straightened out i will continue to look into what happened and update. But as with anything involving medicaid, it may take a while. Thanks again.
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