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Living with Polyneuropathy CIDP, GBS, & CMT

Does this sound like GBS?

About 6weeks ago had a sore throat, went to Dr and was diagnosed with Strep and took medication for it. After 2 weeks still tightness in throat. Started getting tingling in my fingers and toes. About a week later stiffness in jaw, difficulty opening jaw wide, tingling in face. This week my legs mainly my thighs have been sore and my legs feel really heavy when i walk. Also my back has gotten sore as if I have difficulty standing up straight. Also I feel shortness of breath with minimal physical activity.I'm at my desk now feeling like i'm breathing hard. just sitting at my desk. I walked up the street today and could barely breath. The past few days I'm sitting at my desk and can't take a deep breath.

I've been to Dr and had EKG, Chest X-Ray, Blood tests to rule out vitamin difficiencies and other common illnisses. Gone to ENT and they put a camera in my throat and didn't find anything. Suggusted it could be related to heartburn but I've never had it before and I am not convinced of this being the answer. The shortness of breath has gone off/on for about 3 weeks. If I run even a block I feel extremely winded. I asked my doc about a referral to neru but he doesn't think its necessary. He tested my leg reflexes/strength last week and all seemed okay. I'm concerned of GBS does this sound consistant with the symptoms? Its been about 6 weeks since symptoms started.

I’m no doctor but I was recently diagnosed with GBS - November. First I went to a chiropractor, then local ER, then local neurologist, all the while I kept getting worse. The tingling sounds like GBS to me. They should be doing an MRI and spinal tap. One day I decided to try a different hospital in the city - Pittsburgh, and the next day I was in the ICU. My advise see someone else, go to the ER a good one! Tell them your symptoms and mention GBS. The sooner it’s caught the better. Go now or after work. Prayers for you.

Thanks I’ve been to ER and mentioned this maybe I should go to another. How long did your diagnosis take and what symptoms were you experiencing?



Sami said:
I'm no doctor but I was recently diagnosed with GBS - November. First I went to a chiropractor, then local ER, then local neurologist, all the while I kept getting worse. The tingling sounds like GBS to me. They should be doing an MRI and spinal tap. One day I decided to try a different hospital in the city - Pittsburgh, and the next day I was in the ICU. My advise see someone else, go to the ER a good one! Tell them your symptoms and mention GBS. The sooner it's caught the better. Go now or after work. Prayers for you.

The tingling in the fingers and toes is the only familiar symptom to me. I think the only real test for GBS is a test of your spinal fluid. Best of luck. If it is GBS, don’t let it go too long without a diagnosis. Take it from someone that did.

My GBS was converted to CIDP after a year, but your other symptoms are very familiar to me. Keep at them. Seven doc before my diagnosis and treatments!

When my husband was hospitalized, the neurologist said a spinal tap and EMG would be needed to confirm it was GBS. Insist on those tests being done to confirm. Good luck.

Hmm I've tried to get into see a neurologist but there is a month wait for an appointment. My Dr insists its just anxiety and I shouldn't be concerned, but the breathing problems seem to be getting worse by the day and are keeping me up at night. Can anxiety cause all of these symptoms? I don't think so but the dr seems to think so. He tested my lower reflexes and said my leg strength seemed okay and since I'm able to walk no one seems to think there is a problem. Is it possible that these symptoms could last so long with GBS? I understand that GBS usually peaks after 2 weeks or so?

My symptoms started with numbness in hands and feet, then moved up my body. First trip to Er they did an MRI, this was one week into the symptoms. My reflexes were nonexsistant and strength was low. The MRi showed inflammation in my brain an the suspected ms. They set an apt for the following week with the local neurologist. Each day my numbness got worse and I became weaker. I also started to get horrible back pain. Saw Nero an he said I doesn’t look like ms but not sure what it is. They also suspected lymes. He ordered a spinal tap for 5 days later. Got that done, but wouldn’t have results for another 4 days. The day after the spinal tap I cld not walk at all, and the left side of my face started to droop. When I saw that I decided to go to a bigger hospital. They mentioned GBS within 10 mins. So it was about 2 1/2 weeks to my peak. But everyone is different. They say my case is mild, I’m 28 in good shape and healthy, besides the GBS.

On another note my dad for the past year has been having trouble breathing to the point of two hospitalizations. They mention anxiety to him as well and say it’s a combo of that and asthma. His asthma meds help a ton.

Thanks Sammi, my reflexes are still there but my strength is low. Over how long a period did this happen before the symptoms onset like this? Oh I now see your response about 2 and 1/2 week.s Thanks.

DISCLAIMER -- I am not a doctor, and cannot diagnose any medical ailment. My observations are based only on my own personal experiences.

The tingling you have is about the only GBS symptom I see, and tingling can be caused by a number of other things. The fact that your reflexes are normal, and you have strength in your legs after what looks like about 3 weeks says this does not look like GBS to me.

though it maybe serious what is occurring to you, what you describe does not sound similar to my experience. I initially had tingling and odd blood pressure issues. Then I was unable to raise my left arm over my head, though I had no "feeling" of fatigue, just an inability to move it.

I did not have reflexes, if you lose them I believe it would be an indication of function degredation that is consistent with this diagnosis.