Nebie and need information
AnonymousJuly 8, 2008 at 1:21 pm
I’m not sure where to post this so I’ll try it here and see if you good folks can help.
I’m going to post what my wife is going through as I did to the neuro clinic when I filled out the patient information page.
The week of 06/16/08, began to experience numbness in L foot which rapidly progressed
to R foot, both legs then to L hand and to R hand. This followed by 2 weeks a mild GI
problem with nausea and vomiting. Fever was not checked. There is a sensation of “skin
feeling tight” as if swollen There is difficulty walking and writing. There appears to be
problems with proprioception and sensation. No pain involved at this time in extermities.
Fatigue is greatly increased. No dysphagia or respiratory distress. There is pain from old
cervical injury. Hx of type 2 diabetes but no recent hyperglycemia. Episode last winter
with confusion similar to TIA with no extermity involvement. This episode was attributed
to psychological stress (conversion reaction) by Dr. xxxxxx local neurologist.
There has been no treatment at this time. This has been submitted by husband. I have
included as much information as I can and hopefully you will have enough to plan your
evaluations. Thank you for your fast reply and appointment time!
(local neuro) He has attributed this to psychological stress but made appointment at for
08/15/08 and said if condition worsened to return to him for possible corticosteroid TX as
condition could be demyelinating condtion. No evaluations were conducted except
reflexes and general neurological in offic exam.
What does this sound like to you? ANY info is greatly appreciated!!!
AnonymousJuly 8, 2008 at 1:59 pm
This sounds very much like what I experienced a couple weeks before being hit with GBS. I would push for more testing. A lot of us were told our symptoms were stress related, myself being one of them. I would persue this further. It certainly could be the start of something neurological.
Gotta run as my kids just arrived and want lunch. Will try to talk to you more later.
July 8, 2008 at 2:07 pm
I would find another doc, for 2 reasons, the first, the fact that he is just waiting for a progression and not doing tests to r/o possibilities is ridiculous. Secondly, if your wife has gbs and not cidp, steroids are actually harmful as stated by various abstracts. Time for a l/p, ncv/emg. No time for waiting. Ask for blood work for obvious heavy metals, inflamation, lymes disease, etc. Good luck and remember, the longer you wait, the more damage, and some of the damage might not ever be able to be repaired.
Dawn Kevies mom
July 8, 2008 at 2:37 pm
sounds a lot like what I went thru. Mine hit one side more than the other and my skin was tight in places…my legs and my neck. There is more of course, but this is about your wife.
to add to the above advice, a lot of us have had LP’s and they were negative, so dont go on the results of one of those alone. Insist on a nerve conduction test. Had I had that, I am sure I would have spent a lot longer in the hospital being taken care of than sent home with “seek mental help” because they told me it was stress and anxiety.
AnonymousJuly 8, 2008 at 2:38 pm
Thanks so much for the replies. We do have a new Doc. I couldn’t wait until August for help so we are going Thur. to a Neuro clinic. I am an SLP and my neighbor is an OT and runs a local outpatient rehab facility so I get feedback and oddly enough, the local neuro is really big on dxing anything he can’t explain as a conversion reaction.
BTW, anybody else here from TN?
AnonymousJuly 8, 2008 at 8:46 pm
i just wanted to say hello and good luck. stick the people here, as you can say or ask anything and always get a wonderful response almost immediately.
i am not a good one for advice on the questions you’ve asked, since this is new to me, too, and the docs have now decided that GBS and CIDP are not my problem.
good luck to you!
AnonymousJuly 9, 2008 at 3:29 am
ditto to what everyone else has said push for as many tests as possible and dont rest until you are happy that you are being taken seriously. Keep an eye on her for any signs of deterioration and dont be afraid to see as many doctors / hospitals it takes until you get taken seriously
AnonymousJuly 15, 2008 at 12:55 pm
Well, we went to the Neuro clinic on the 10th. She had bloodwork done and a nerve conduction test which showed no damage. She was using a cane to get around in the clinic and was so very tired after the drive to Memphis.
The Dr. did the basic neuro exam and ordered the bloodwork.
His clinical impression was that it could be as simple as b12 defeciency.
The next day she felt stronger and Sat. she drove around some.
Sun. The MD called (yes, he called on Sun.) and told her her b12 was indeed low. yesterday she drove 50 miles to visit some friends and was totally worn out when she got home. She was still tired this morning but she is showing improvement. Supposed to call her GP this morning to schedule b12 shot.
I will remain skeptical about this until she is much much better but am so grateful that she feels better.
I want to hear more about your mild case of GBS.
Thank y’all sooo much
AnonymousJuly 19, 2008 at 6:52 pm
Wife was initially dx’d with b12 defeciency and started injections last Wed. @1000mcg and is taking 2000mcg daily PO. In the last couple weeks, she has increased energy although still very fatigued. She is getting around w/o cane for the most part although still a little unsteady and still lacking proprioception.
She says when she turns her neck or bends over, she feels electric like sensations in her hands and feet. I would think cervical injury because she has an old injury but there is little pain.
I am wondering if the sensations are the nerves beginning to “wake up” so to speak.
She has PT eval next week and OT the week after that. Not even sure at this point if she will need PT. Since our neighbor runs the outpatient program and is the OT there, we got a quick curbside the day of the neuro visit. It will be interesting to see what she thinks when she gets back from vacation.
Does the electric sensation thing sound familiar to any of you?
Thanks again for your posts during a VERY scary and trying time!
AnonymousJuly 19, 2008 at 8:35 pm
“Does the electric sensation thing sound familiar to any of you?” Not really. I do get shock-like sensations, but they are almost never associated with motion. Electric sensations are a type of pain, so I would look into the old injury first. Maybe she has developed some mild swelling or something.
I am glad that the B-12 seems to be helping. Give it more time; it may take another month or so.
AnonymousAugust 10, 2008 at 5:40 pm
Things are much better! Much less fatigue and some return of sensation including pain which the OT was pleased with. She was dismissed from OT one week and PT the next. Still some problems with balance while eyes are closed and some problem with fatigue and still some loss of proprioception. MD says b12 is up closer to normal so I guess recovery is now a waiting game.
Thanks so much to all of you who answered and PM’d me! I came here feeling very lost and frustrated and got some comfort.
Thanks sooo much!!
BTW I am from TN for the gal who asked in another post
AnonymousAugust 10, 2008 at 5:51 pm
Hi! If this happens again and she gets bad off again, she made need further evaluation. Keep a journal also! Perhaps a Rhuematologist can answer her weakness and fatigue if she falls into the same situation again. No nerve damage is a good sign. But Fibromyalgia can be dibilitating and also be a disease very hard to diagnose. Which is something she might have. It normally shows no nerve damage but the symptoms can mimic a Neurological problem when in fact it might not be a Neurological problem. Chronic fatigue syndrome is another disease that can have strange problems. Might not even be GBS or CIDP but mimics it! I too have Fibromyalgia and that is how I started but I have the CIDP too! I wish your wife well and hope the B-12 was the issue and nothing else! May she get well soon!
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