Carpal Tunnel Mistakes

hi & welcome,

rest your hands as much & as often as you can. with time, maybe a lot, there is a good chance they will feel & be better. do not go back to this doc. take care. be well.

gene gbs 8-99
in numbers there is strength

I had problems with CTS for years. Not only in my hands and wrists but also my forearms. I know it is very rare to have this double whammy but from the symptoms and all I have heard and read about it, this is what I deal with. But never enough of a problem to even consider surgery. It was worse when I was pregnant with my kids, and would wake me up sometimes depending on my sleeping position (I’m a side or stomach sleeper and that makes it worse). Since July of this year it is awful sometimes. At night i get no relief, stress makes it worse, and sometimes my hands become weak. Some nights even if I sleep on my back with my arms across my body I will wake up with some pain and “sleepiness”.

I have also learned that we know ourselves better than our dr’s and sometimes we need to be less intimidated and stick up for ourselves and our treatment. I hope you continue to recover and that things get much much better for you.

Peace and hugs
Lori

JQuinney, you are so right. Carpal tunnel on both sides at once is like hen’s teeth – very rare. Typically the hands feel like a bunch of sausages in the morning and improve during the day. Your story is all wrong for CT. The digits affected are the first, second and the thumb side of the third as these are supplied by the median nerve. The outer side of third, fourth and fifth are supplied by the ulnar nerve which is not inolved in CT. DocDavid

jquinny,

I totally agree with you concerning having surgery on your hands after having GBS. I feel that the doctors I had were more concerned with experimentation than my welfare. Below is a paragraph of a past entry that I posted on this forum about a year a one half ago. The surgeries I mention were performed in 1988 & 89.

[COLOR=”Purple”]After two years I was desperate to get the use of my hands back. I had no movement in the thumbs and could not extend my fingers. I could drag my fingers open and then close them around what ever I wanted to hold onto. I was referred to a Hand Specialist through my Occupational Therapists. This specialist told me that I would never regain anymore use of my hands than what I already had. He said that after 2 years there would be no more improvement. So, trusting in his knowledge, I consented to having surgery on my right hand (I’m left handed). He actually wanted to do both but I said no to this because I remembered what it was like to have no use at all of my hands, and unable to do anything for myself. Turns out that this was a wise move on my part since my hand ended up being a very screwed up mess after two surgeries. I then found out that after two years your hands can come back to some degree. I can now use my thumbs and am able to extend my fingers completely on my left hand. Although I have lost most of the strength in both hands I can now do almost anything that does not need the use of a lot of fine motor movement or heavy duty strength. I mean, forget about picking up a coin off the table or opening a packet of ketchup at the local fast food restaurant! The surgeries that were performed on my right hand hampered its use considerably. I would have been able to do a lot more if I had decided not to have these surgeries. It’s a pretty good claw now! The doctors wanted to do another surgery to try and correct the damage that had been done, but I decided that I did not want to be a guinea pig anymore. I guess what I want to say is that it took over 4 years for me to get the use of my hands back to any degree and that if I had it to do over again I never would have let a doctor start cutting me.[/COLOR]

GB

I had an EMG a year after being diagnosed with GBS. Results were all very predictable…Carpel tunnel, RLS, Neuropathy. That I ‘felt’ going into the test. Braces were suggested, I didn’t get them; tried neurotin and Requip, it didn’t work.

Thanks, jquinney, for sharing your story on surgery. Sorry to hear you had to go through it but know it probablly made the decision for a lot of us on whether or not to have the CT procedure when it may not be CT at all.

That’s how this forum helps!

I am on Clonazepam (generic form of ceberclon). I haven’t heard anyone mention using it on the forum, but it helps in some much needed sleep at night. It is best known for treating seizure disorders, but is used as a cross-over drug for treating nerves. Makes since since it’s job is to calm the area of the brain controlling the central nervous system. I take it only at night and very small doses. It seems to quiet the nerve pain and residuals I was experiencing from GBS. (At least until morning)

jquinny, Thanks for sharing your story,
JayDee

JayDee,

I had been on Klonopin for the past couple of years to help me fall asleep after having broken my neck and going through a couple of surgeries for fusions / instrumentation. I thought the Klonopin worked very well in helping to fall asleep — and I found that I awoke without drowsiness. The only downside to the Klonopin is that it only seemed to work for about 4 hours, after which I was “on my own” for further sleep.

Regards,
doug

Doug, same deal here. The clonazepam allows me to ‘get’ to sleep, but it seems to last only about 1/2 the night. This, however, is more than I was able to sleep befor. We recently upped the dose because my GP says it is typical to get “used to ” this drug and it needs to be ramped.
I’m just glad to hear someone else had heard of using it.

Thanks,
JayDee

Dear JQuinny:

I was diagnosed with Carpal Tunnel Syndrome a year after having GBS. I was tested several times and was ready to have surgery when the neurosurgeon tested me one last time and found there was no CST. It turns out that the residual effects from normal GBS are real difficult to distinguish from CST.

During one of our local GBS support meetings, it was revealed that people with GBS tend to sleep with their wrists bent in an exagerated squirrell like position. I didn’t think I slept like that, but my wife confirmed that I did. With wrist braces which prevent you from bending your wrists at night, I was able to break the habit in about a week and haven’t had any problems since.

Lee

Really found this thread interesting. I, too have been dx’d with CTS in hands and forearms and some tunnelling in shoulders as well. At its worst last summer and fall, I did have problems with sleeping and severe pain that woke me up. Doc that dx’d, after I refused surgery, suggested Cymbalta, but not braces. Cymbalta worked for a while (made me fat) but then pain at night came back. I wore braces every night for about six weeks and pain in arms and hands at night went away. What didn’t was the tingling and numbness in my fingertips and virtual throb in shoulders upperams elbows forearms and hands that comes and goes. Never had this residual before. Went off the Cymbalta and it got much worse and now is in feet, ankles, legs, knees, thighs and hips. Last neuro still thinks this is all CTS and that I should have surgery. My question: how will this help all my other body parts. But I do think I did have a touch of CTS that set off the other residuals. Trying Neurontin and PT ( and alternative therapies) now so I can learn my limits (always an issue for me) and learn the value of rest. sigh……

i had the same thing happen to me. i was misdiagnosed in 1999 with carpal tunnel. the symptoms didn’t quite fit that of carpal tunnel, but the ortho. proceeded with the surgery anyway. there was no improvement whatsoever. of course in 2001 i was walluped with gbs and was completly paralyzed. it was then that the (partner) of my neurologist said i had gbs back in 1999 and it was not carpal tunnel. drs. should really listen to their patients and their symptoms. it was after a 2nd and third opinion i was properly diagnosed. as for the anxiety, i personlly take effexor and xanax. it works wonders for me. unfortunatley antidepressants need to be experimented with, so you can deal with the side effects if any. i finally found the right one, and you will too. don’t give up hope. something will work for you. feel better.:)

I take Klonopin to help with sleep at night too. I take only 1/4 tablet, so it’s doing the job with very little medication. If I forget to take it though, I notice right away that I can’t fall into a deep sleep.

If you have trouble staying asleep, you might want to try Ambien SR. This is the slow release form of the drug. Works great and no drug hangover. It’s not for long term use.

I had CTS symptoms that were much worse at night and kept me awake. I found that I was sleeping with my hands curled in the “squirrel” position. Wore wrist braces for about 2 weeks and this helped greatly. I have GBS residual pain in my right wrist and extending up my thumb that gets worse with stress or overuse, but it continues to improve 2.75 yrs post GBS.

my family dr. said he’d rather not put me on ambien or any other sleep aid, because i also have autoimmune hepatitis and until my liver enzymes are under control, he really doesn’t want to add any more medication into the mix. he said he’d rather add another xanax since i’m already on it every day as is. i take 10 pills of cell cept every day for my liver. my liver problems are a result of the gbs. all in all, i take 21 pills per day. 🙁 i really have to watch what i take because most meds. are metabolized through the liver and i’m sorta in limbo ’til my enzymes decrease. how well are you coping with your gbs? are you working? how do you handle the day to day tasks???

Deb,

Mostly I’m coping well. My residuals are minor (compared to many here), although they leave me far from what was normal for me pre GBS. I had a relatively mild case, although I got the axonal variety of GBS that has left some probably permanent nerve damage.

I have the usual fatigue common to this disease (I’m taking Provigil to help with this), I have neuropathic pain and numb areas on my skin in various places (Effexor and occasional Dilaudid makes this tolerable), no stamina, weakness in my upper legs,`hands, and arms. My sleep pattern has not yet returned to normal, so i take Klonopin to help with this. I have weakened diaphram muscles, and problems with my voice, when tired or stressed. My balance is off, and I have problems with propriation (probably spelled wrong) – physical therapy is improving these. I have trouble regulating my body temperature (black cohosh seems to help with this), and my blood pressure fluctuates (I take Tenormin when needed for this). All of these residuals get worse with stress or over exertion – also common with GBS.

I sleep 10-12 hrs per night, rest during the day whenever I need to, try to limit stress, take lots of vitamins, try to eat a balanced diet, and keep a positive attitude.

I am fortunate, because I was able to hire a personal assistant who does lots of the day to day things that don’t require me personally to participate, such as shopping, taking the car for service and washing, and misc. other errands etc. This helps me to conserve my energy for things that I want or need to do myself. Also, my husband helps me with things that are hard for me to do.

It’s good that your doctor is being cautious due to your liver problem. I didn’t know that GBS could effect the liver. I learn something new on this forum every day! I do hope you will continue to improve.

Best wishes,

Suzanne

suzanne. thanks for all of your info. it seems we have quite a bit in common as far as residuals. my case was hit hard though while working as a full charge bookkeeper in a health club. in a matter of a few days i was just about completely paralyzed in jefferson hospital in philadelphia. now, after a long period of physical therapy, occupational therapy, two years of i.v.i.g and a year of chemotherapy, i’m now left asleep from the nose down. my balance is off and i walk with a cane and use a wheelechair for long distances. needless to say, i was forced to go on permanent disability. this was very hard for me to stop working. i sometimes feel useless and not contributing my fair share to the house hold. my husband has been phenominal through this whole ordeal. at the beginning he had to feed me, bathe me, dress me and even deal with that time of the month for me. thank god i just had a hysterectomy, so that’s a phase of my life i can leave behind. i also have very supportive friends and family. i too am on effexor (the miracle drug) and xanax to help me sleep. i get fatiged during the day even if i have a good nights sleep which is far and few between. as far as the gbs affecting my liver; any autoimmune disease can attack the liver. it’s not uncommon for this to happen. guess i was one of the lucky ones. i do keep a positive attitude and try to talk to first time chemo. patients to let them know what the medicine does, how they’re going to feel, when they’re going to feel it, etc. it seems to help the patients when they know, i too have been through a year of chemo. sorry i’m rambling, but it’s so nice to talk to someone who knows how i feel. so where in northern virginia are you from? i have relatives in mannassis (sp?), west virginia and crisfield maryland. i didn’t make it to the crab derby this year in crisfield. please keep in touch. i enjoy talking with you. you’re uplifting. stay well.

Hi All: I too have cts in both hands, but at least my neuro told me it was a better chance that it was a residual from GBS than true cts. It was very discouraging as my hands were the first to improve after GBS and now, a year and half later, I have neuropathy in them again. I would never have surgery listening to all your stories, but do wear the braces at night which seem to help. I had so much pain in my hands it would keep me awake at night.
Deb: I am curious about your liver issues. After GBS my liver tests were slightly abnormal, then very elevated and I had my gall bladder out, and now my Alt is moderately high andmy AST at the highest normal level. I have to go back in two weeks for a repeat liver test to see if things are any better and if not will have more tests. So I wonder how they diagnosed you and how high your ALT was, if you remember. I have been having intermittent fevers and feel more fatigue than ever and wonder if there is any liver involvement. Thanks for any info you can give me-of course I don’t expect a diagnosis just something of your experience. Jeff

Deb,

It’s good to hear that you are doing so much better now. Talking to first time chemo patients is a wonderful way to use your experience to help others. I know it must me a great comfort for them to hear from someone who has been there and come out the other side.

I continue to come to the forums here mainly to try to be of some help to others who are new to GBS. I’ve learned so much and received such encouragement from so many others who post here. I hope to be able to use what I’ve learned to help make it easier for those who are new to this disease. I think most of the long time forum members do the same.

I also really enjoy the interesting personalities of the members who post here.
There are some really fine people.

BTW, I live in Annandale, but we do have members here from Manassas.

Take care and best wishes,

Suzanne

yes, i try to help the chemo. patients as much as possible; holding their hands through the process. this website has been a god send to me. i wish i could actually meet someone, face to face who’s going through this. i haven’t found anyone close enough yet to do so. i think i actually sleep better at night, after reading the forums and comforting words from others. stay well.

During the past week I had a nerve conduction study done because Of the tingling and numbness in my hands, arms, legs and feet. The doctor “found” CTS in both hands. But as I read these posts I wonder of it truly is CTS and not post GBS. I was very surprised by this finding. I am also having a series of MRIs done. I haven’t got all results back of course but this has certainly given me pause to wonder. I evidently have some nerve thing going on in my hands. I also have no reflexes in the knees and ankles from GBS which doctors always like to confirm for themselves. These have been gone since I have GBS for the first time in 1978.
I am having more severe problems with this tingling and numbness in the last few months even though it has always been an off and on problem. That’s why all the tests.

BabePrice,

I, too had GBS a while back in 1979, and have been dx’d with CTS and have for a year been having lots of Post GBS issues, with not having many over the past 26 years. I would be interested in your finding with your doc. Why the MRI, they didn’t do that with me.
I’m trying to get some info together for us long timers and Post GBS!

On Sept 16 I had the tingling and numbing so bad that I could not lift my arms and legs. My headache was horrible. My blood pressure dropped to like 100/53 but my pulse rate was racing. My speech was slurred and I was slow to respond. I ended up being taken to the ER by ambulance. Put a real scare into my family. The first doctor I saw didn’t really want to deal with me (he had tickets for the TN-FL game that afternoon) Plus GBS with MF was not in his PDA. His replacement in the ER was great..got me a referral to a Neuro group. The Doctor I saw was very through and willing to listen to my symptoms. I also had weakness in my shoulders and neck. thus all the tests. I don’t know what they will show but at least he was willing to help and not just dismiss what happened as possible anxiety (as the first doc wanted to do). I know that what happened was not anxiety but real neurological problems. Since then I am still having alot of the tangling and numbness and weakness. Maybe residuals or flare-ups from the original GBS?
I’ll let you know findings when I get them. What bothers me and is maybe silly on my part but people say they hope it isn’t anything but I want it to be something….I would like some answers to this. Crazy right?

I think we all want whatever it is ailing us to end up being “nothing” rather than something bad. I remember hoping the same thing when I was in the hospital…I remember telling my hubby that I hoped it turned out to be nothing (the dr kept talking MS and other such stuff and I was terrified) and that the dr would tell me I was nuts. Guess what? he did. And I was devastated! That hurt me more than a “real” dx.

[QUOTE=Natalie Flick]BabePrice,

I, too had GBS a while back in 1979, and have been dx’d with CTS and have for a year been having lots of Post GBS issues, with not having many over the past 26 years. I would be interested in your finding with your doc. Why the MRI, they didn’t do that with me.
I’m trying to get some info together for us long timers and Post GBS![/QUOTE]

the dr told me the MRI I had was to rule out MS. Guess it shows up as lesions on the brain. Dont know if that is the same reason for others to have one.

That makes sense. I am suppose to be scheduling other tests but I’m just having such issues with moving forward. I was supposed to go back to my PCP 2 weeks ago and I cancelled and have not rescheduled. I am so afraid that it is Post GBS and it will only get worse and I have nothing that I can do to stop it. The tingling and pain hasn’t gotten any worse in the last 4 weeks so I have kinda hit a plateau. But I am losing muscle tone and strength everyday. WIsh they could do the Ivig or PP now. But about 26 years too late.

natalie they can do ivig or pp now! it might take you some time in talking to your neuro but it can be done now even after all the time that has past. i had ivig after my second event -2 months after my first, i would still get it except i had aseptic menigitis from the 2 nights that i had it-bad reaction, so my only chance now is pp-which i haven’t had any luck in getting for the rest of my events. simply ask your neuro if you can give it a go and see what happens. you might be surprised at the results. do you take any neurontin or lyrica for pain? are you doing any type of therapy for the weakness? are you over doing it? take care.:)

fom, mris will show the lesions on the spinal column and on the brain. it can also show an infection on the spine-my first one showed an infection at the time of my first gbs paralysis event back in aug 05.

I feel the same kind of fears. when I first had GBS they told me that “they thought they could keep alive” So all this post GBS is scary to me. But still I want answers to my symptoms….even though I don’t know if there are any. These posts help so much.

Cheryl,
Am I wrong to think that Ivig or PP are only for onset? Is there any therapeutic value for me after all these years? My problems are Post GBS (26years) and if there is a chance that it would stop the degeneration of my nerve sprouts now I would go for it.
I am taking no drugs right now, just came off Cymbalta. I want to try it solo and see what my pain threshold is..that’s why I cancelled PCP appt. I am trying acupuncture and DT massage with some reiki, have changed my diet and want to start PT to see where my limits are. Will report all this to PCP and go from there. I am still trying to get a neuro appt with Dr. Tahmoush, but my PCP is hesitant as she thinks this is not a particular acute problem.
I am very strong willed and think I can fight this on my own, haven’t had good Doc experiences. I’m just being ornery, I know. But it has worked in the past!

Natalie,

I haven’t yet heard of anyone trying IvIg or pp for post-GBS symptoms, but that doesn’t mean it hasn’t been done. Anybody else know of this?

Your idea is interesting – I wonder if it can stop the degeneration of the “sprouts” too.

Please keep us posted on what you decide etc.

Best wishes,

Suzanne

If it is a possibility, I would go for it. I have been a guinea pig for so long now, I’m willing to try it too! Now I need to gather info. Anyone, docdavid, gene, jerimy, racer, got any ideas on this?

You know what is also interesting for Post GBS is the Stem Cell research that is being done. I know that there is something out there that can help besides just pain meds and rest. I’ve rested for 26 years, how much rest does a girl need?
I want to get something back. Not have more taken away!

Ben had his first set of cortisone shots in both wrists two weeks ago. He’ll have to go back every 3-4 weeks for them. He still has pain in the thumb area. Maybe the second set will be of more help. The hand surgeon doesn’t want to perform surgery for 12-17 months.

Shannon

Natalie, just stay ornery! that is the best thing, especially if you can’t find or get into see a good neuro. i’m at the point of going to u of michigan if i have another event, because i can’t seem to get all my neuros and other drs all on the same page with what is going on. too many cooks in my kitchen is really driving me crazy.
with ivig in high demand and the ins co digging their heels in, it would be difficult to get ivig just to try. if you continue to be weak, fatigued and in pain, make sure you see someone, don’t let it snowball into another relapse. take care.:)

Cheryl, Many thanks and I certainly understand too many cooks in the fire! I’m pretty sure I’m way past relapse but I am always prepared (like Swimmy).
Hope you get some good feedback at U of Mich. Gene know anyone good there?

Thanks, Natalie. jerimy put me on to his neuro up there-i just have to ok it through my insurance and set up appts and my parents will take me up there. insurance is the biggest mountain to climb right now. i’m hoping thou.:)

Hi,
My carpal tunnel/median nerve release surgery was completed 7 years before my GBS onset. EMG’s confirmed I had it in both hands at the same time. I opted only for the surgery in the hand that was the worst. The numbness of carpal tunnel syndrome effects the thumb, 1st and 2nd finger, and 1/2 of the 3rd finger with the little finger not being affected by it.

It is interesting to note the research underway in regards to “HNPP” (Hereditary Neuropathy with Liability to Nerve Pressure Palsies”), HNPP is synonymous with PMP22(Peripheral Myelin Protein 22), and this mutation/deletion on the 17th chromosone may be present in up to 90% of persons presenting with Carpal Tunnel Syndrome. It is linked to Charcot-Marie-Tooth, and is/has been looked at in familial cases of GBS. (Also has been found to be present in a study of bi-lateral carpal tunnel syndrome that is familial). Does make one go hmmmmm? One wonders if genetic testing would show HNPP in all GBS patients……..

If you research HNPP online there is an HNPP.org website that has quotes from Dr. Gareth Parry on it….

best wishes to all,

CG

p.s// not for all the $$$$$$ in the world would I go through CT surgery again, very painful and that was pre-GBS. I have found that exercises that my PT gave me to be very helpful to try and free up the trapped median nerve, and it is a lot less intrusive than surgery.

Shannon,

I apologize but have lost track of Ben’s carpal problem. Have physical and occupational therapists worked with him to exercise his extremities? Surgery scares the daylights out of me.

Regards,
Marge