At what point should I see a doctor? Please help
AnonymousFebruary 8, 2010 at 10:17 am
I think I am in the early stages of GBS, but I’m confused as to what point I should go to the doctor. I still have my reflexes and can walk, although it’s getting more challenging going up stairs, etc. It’s also becoming challenging to sleep, because my legs feel like they have “willy worms” in them. From reading the other posts, it sounds like if you go see a doctor too early, they dismiss you, and they only take you seriously if you can’t walk or have lost your reflexes. I’ve also heard that if they do a lumbar puncture or the nerve conduction studies too early, then they’ll come back negative and you can’t be diagnosed and won’t be treated. So, it sounds to me like damage has to be done before they will take you seriously and treat you. Does that seem accurate?
Here is my story and questions follow: I came down with a really bad sinus/respiratory infection, and was only able to take a few of the anitbiotics they prescribed me (they made me sick), so I tried to fight the bacterial infection on my own. I had the illness for a month, and was still sick when I went in to see my doctor to get my bloodwork done (I have the autoimmune disease Hashimoto’s which has led to hypothyroidism). She said that although I still had remnants of the sinus/respiratory infection (cough, ear infection, etc.) I wasn’t running fever and she wanted me to get the H1N1 vaccination, because my autoimmune disease and age (25, female) put me at higher risk of dying from the flu. So, I got the vaccination on Jan. 25th. Big mistake.
I began experiencing extreme fatigue, nausea, migraine, fever, body aches, and started going into coughing spells to the point I had difficulty breathing. I battled this for a week, but got better except for the fatigue which I initially blamed on the stress of breaking up with my boyfriend the week before. [B]A week after the vaccination, I began feeling very slight tingling in the toes on my right foot. [/B]My legs began to have deep aches (like I had exercised too much) and were very sore and heavy. The fatigue was the worst part, though. After that, the tingling spread to the other foot, and then my right hand. The right side is more affected than the left. I have the symptoms equally in both feet/legs, but my right arm/hand is much worse than my left hand/arm.
I’ve gotten clumsy — dropping items, unable to write, nearly losing my balance, etc. I spend most of my day with a heating pad in bed or on the couch. My legs feel like they’re vibrating, I have electrical “shocks” in my abdomen, I’ve lost my appetite, I have severe low back pain, and my shoulders/neck are hurting as well.
BUT, I am still fully able to walk…in fact, if anyone saw me walking they wouldn’t even know anything was wrong. So, [B]should I wait until it gets worse to see a doctor so they’ll take me seriously[/B]? I am on day 8 of my symptoms.
These are my questions:
*The “severity” of the symptoms seem to come and go. One moment my legs are bothering me the most, the next my right hand is almost completely useless and becomes the bigger problem, and the next my back is in agony.
*[B]In the beginning stages, do GBS symptoms come & go? [/B]Yesterday, my right arm/hand was almost completely useless. I couldn’t feed myself with it, brush my teeth, etc. but, today, it’s doing better. It seems to get better if I rest it, but worse if I try to use it.
*A hot bath seems to temporarily help reduce the symptoms.[B] Is that normal[/B]?
*[B]Do you lose your reflexes in the beginning stages of GBS or is it only later?[/B]Should I have lost my reflexes by day 8 of symptoms?
*[B]My right hand/fingers become mottled[/B] (red with white spots, and goes completely cold). Is that part of GBS?
*A lot of you have mentioned that your feet/hands FEEL cold, but [B]are they actually cold to the touch or do they just feel that way[/B]? My hands/fingers are actually ice cold when other people touch them.
*[B]Does any one know of a good neurologist who has experience with GBS near the Atlanta, GA area?[/B]
*[B]Has anyone had neuropathy BEFORE they got GBS?[/B] I had neuropathy in my right arm/hand from when I was younger that had healed quite a bit (but not completely), and I’m wondering if that’s why the GBS is attacking there the worst, because that was my weakest nerve point before onset.
I tried to get in to see a doctor today, but my internist is booked, so they put me with a nurse practitioner, and said she could give me a referral to a neurologist. I’m getting really scared…every night I go to bed and hope I’ll be better in the morning, but I’m not.
Any help would be greatly appreciated. Thank you all SO much!
February 8, 2010 at 11:39 am
considering your history, I would get in to see someone ASAP. my case was very similar to yours. Seemed “mild”, uncomfortable, and not serious. I was sent home after 2 days of tests and hospital stay. Almost 4 years later, I have many residual problems that make like a bit miserable. I wrote my first post similar to yours, and was told to seek medical attention IMMEDIATELY. If you are told nothing is wrong with you…insist INSIST on more testing. All I had was a lumbar puncture. Had they done the nerve conduction test, the dr would have found the problem, I would not have been told I was nuts and needed a shrink. If your regular dr won’t take you seriously, find someone who will. Do not let them tell you it is nothing. SOMETHING is going on, YOU know it, you FEEL it, you are not crazy and you deserve to receive care. An hour too late and you may not be able to breathe. It can suddenly move fast.
One side was worse with me too, then it would feel as if it would switch. Soaking in epsom salts seems to help…a hot bath. I felt better if I sweated profusely (which for some reason I kept doing). Thought whatever it was, I would just “get over it”. HA, didnt happen. I didn’t get treatment, I was not properly diagnosed till 3 months later. Don’t let this happen to you. Stand up for yourself and get the help you need. Something is going on, please see a dr asap and let us know how you are doing.
HUGS and Prayers
AnonymousFebruary 8, 2010 at 6:59 pm
Thank you all so much for your responses and help! I saw the nurse today, and she brought in another nurse for a second opinion. I think I scared them both. They said I didn’t look good or “present” well. They tried to get me in to see a neurologist today, but since my appointment was so late, they weren’t able to. They referred me to a neurologist @ 9:45 tomorrow morning, so we’ll see what he says. Thank you all again! I appreciate it!
AnonymousFebruary 9, 2010 at 11:41 am
You are describing the exact symptoms that I had after the H1N1 vaccination. (see my post under vaccines for whole story). I was mobile the whole time. I lost my reflexes about 10 days later and then they came back 10 days after that. I had arm weakness, and terrible pains in my calves, but again was mobile. My main problems were GI, nausea, fatigue, loss of appetite. You need to see a neuro right away. Please get the Lumbar Puncture. I did not and have regretted it. Since my case was “mild,” I did not get any treatment, any IVIG, and I am convinced that I would have been better off. I have nerve damage to my GI system now, and a LOT of continuing problems, which I am convinced would have been reduced had I had treatment. Good Luck!!
AnonymousFebruary 9, 2010 at 3:51 pm
Thank you all again for your continued support and responses! I went to the neurologist today, and it looks like I’m lucky, because he is taking everything seriously (I was actually scared to go to the neurologist, because I had read so many stories on this board where they just dismiss the person). I had weakness during my physical exam, had lost a couple (but not all) reflexes, had some decreased reflexes, and had diminished sensation in my lower legs/feet when he stuck me with the pin. He ordered a brain MRI that very second, and I had one done immediately. He is doing a lumbar puncture on Thurs., and considering a nerve conduction study after that.
He also ordered a bunch of blood work — does anyone know what he’s looking for? Would there be any indicators of GBS in the blood work, or is he using it to try to rule out other things?
I’m a bit nervous about the lumbar puncture…does anyone have any suggestions as to how to avoid the headache afterward? He’s performing the spinal tap in his office (not a hospital), is that ok/normal?
Thank you all again!
AnonymousFebruary 9, 2010 at 4:08 pm
You might want to ask how quickly they get the LP results. My doctor wanted to do it in his office, and I think they told me 1 week for prelim results. I have been told if you go to the ER, results are immediate. I was very worried about the headache and the doctor did not reassure me, so I did not have it done. People told me to lie flat for about 24 hours afterward, and also you can get a blood tap or something like that if you get a leak, where they take blood from your arm to seal the leak.
Sounds like you are on the right track. I am rooting for you to get better treatment/response than I did!
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