Discussions By Condition: Nerve conditions

Frustrated with no answers...HELP

Posted In: Nerve conditions 13 Replies
  • Posted By: jojom0405
  • August 14, 2007
  • 02:24 AM

Hello. I've been reading the posts on this website and it seems like there are alot of people out there who are suffering and having a difficult time finding answers from doctors. I am in the same boat. This is my story:
I gave birth to a beautiful baby girl 5 months ago via vaginal delivery using epidural for pain control. I was stuck numerous times before the epidural finally kicked in. I developed a spinal headache soon after and had a blood patch done to take care of that which worked and the headache went away. I was fine for a while after that except that the right side of my body felt kind of strange. It's hard to describe. I guess the best way to desctibe it is that it felt weaker. Two months after giving birth I started experiencing strange sensations. I guess the are called parasthesias. Here is a list of my symptoms:
Big toe pain: right foot
Weird sensitivity to touch on top of right foot
Muscle achiness: thigh
Muscle achiness upon use: upper right arm and some on left upper arm
Feet feel cold from inside but not to touch
Cold prickly sensations throughout body
Feel speech is weird: harder to annunciate
Back is achy: feels like bones are rubbing against each other, sometimes feels like hot needle being stuck in back
Shoulders achy, but not to touch
Slight ringing in ears, sometimes right, sometimes left
Right upper arm feels weaker when doing things; fatigues easily
Bruising easily for no reason
Small red spots, mostly on arms
Pain in collarbone
Pain in hands, joints of fingers
Twitches
Right calf muscle cramp
Cold prickly sensation in feet
Some achiness in lower arms
Have had rib pain in the past, gone now
Have had more headaches than usual
Woken from sleep by weird sensations like twitching or electric shock type feelings
Trouble falling asleep
Painful menstrual cramps, often accompanied by diarrhea, loss of appetite, some back pain (have always had this)
Head feels like it’s too heavy for neck to hold up
About 85% of these symptoms I experience mostly on the right side of my body. I went to a neurologist who said that I had a normal exam and thought it might be stress. I went to my GP who said fibromylagia after a very quick exam. I think this is questionable at best. I went to a rheumotologist to get a second opinion on the fibro and she said no way. I've been taking klonopin for anxiety and just started magnesium supplements. Most recently I've been very distressed at what seems like weakness in my right arm. Doing simple things like haning laundry makes my right arm feel like I've done 20 reps with a 100lb dumbbell. Very frustrating. Also my WBC is low, and it wasn't back in February. Don't know if this is related or not. Anyway, as you can tell this is complicated. I think that I could almost buy the whole stress thing except that most of my symptoms are present primarily on the right side of my body. I just don't know what to think anymore and am scared and confused. And to top it all off I am stuck going to military doctors because my husband is in the military and we don't have additional insurance. I have nothing against military doctors except that it takes forever to get an appointment and they tend to be economical when it comes to running tests, etc. I am worried that this something serious and nobody is taking me seriously. If anyone has any insight please help!! My husband is deployed right now and I am home with two small kiddos and I'm worrying myself sick!! Thank you!

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13 Replies:

  • First of all I am sorry to hear of all you are going through and hope you get some real answers soon! Military docs and the VA hospitals are really substandard, I am sorry to say this but I have heard more horror stories than I wish to admit:( . The more research you can do the better...and please don't let them brush your symptoms off as "stress" that is just ludicrous! Sounds like a few things going on. First of all, are you breastfeeding? Are you on any birth control, including the pill or an IUD? How is your diet and are you taking any vitamins/supplements? Any other meds than the klonopin? How long have you been taking the klonopin? Please go to www.drugs.com and type in Klonopin to look at ALL possible side effects of this med - it may be causing a few of your symptoms, especially the electric shock sensations while sleeping. You mentioned they stuck you "numerous" times with the epidural? Shame on them! That is very likely the cause of your neurological symptoms. I cannot believe they would do that and it may take some time to recover. Make SURE your docs understand that you could be having complications following this botched epidural. Don't let them brush this off! I know you don't have any other options, but please consider trying acupuncture or chiropractic to help with your symptoms. It may be very helpful. Also look into homeopathic formulas that may be helpful - you can find a book at a library about this medicine, or do a google search on neuropathy or parasthesia and homeopathy. Homeopathic meds are relatively cheap, and have virtually NO side effects. At the very least please get yourself "Rescue Remedy" it is extremely helpful for stressful situations! It is a Bach Flower Remedy and you can find this at any good healthfood store. The low WBC count is troubling - how low was it and have you had another blood test done? Have they tested for anemia? Please don't give up, and do look into alternative medicine. I offer a Free clinic for veterans once a month, and offer a sliding scale fee for acupuncture at my clinic. There ARE others out there like me - you never know unless you ask around. If you live near a major city there may be a school you can visit for reduced rates. Best wishesDOM
    acuann 3080 Replies
    • August 14, 2007
    • 04:09 AM
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  • Hi DOM. Thanks for responding. I agree that military medical care is definitely not up to par. It is so sad, especially for the soldiers that really need excellent care when they come back from serving our country! I would not have believed until I saw it with my own eyes. To answer your questions, no I am not breastfeeding (tried but couldn't do it b/c of my stress level with the spinal headache and all), no contraceptives (hate that stuff, makes me sick to my stomach, literally), I took Mobic for a while but have since stopped recently. I've been taking the klonopin for about two months now. I started taking it to help me sleep. I couldn't sleep b/c of the electrical shock symptoms which the klonopin actually seems to help with in my case. I take it in small amounts. No more than .75-1.00 mg per day. I've also been suffering from depersonalization for about 10 years and heard that klonopin can help so finally gave it a shot. It's been lifted the DP somewhat. I also currently take Vit C, Magnesium Malate, and omega3 with glucosamine. I will look more into the homepathic stuff, as you suggest.Yes, they stuck me 3 or 4 times. At one point I felt an electrical current/pain shooting down my right leg. Every oc that I've talked to dismisses this as a possible cause of my symptoms although I disagree. It would be just too coincidental for all of this to have happened after that epidural, in my opinion. So you think recovery is possible? I pray that you so.As for the WBC, right now they are at a 3.6, down from 9.6 in Feb while I was pregnant. I am worried about this as well. Especially since I've bruising easily and have the small red spots and achy bones (although the achy bones are mostly on my right side and maybe I'm confusing muscle pain with bone pain, I don't know). I haven't had any fevers though. The PCP I saw dismissed the WBC and bruising and said that it sometimes happens to women. I've been thinking about accupuncture. What should I look for in a good accupuncture clinic?Thanks again for your reply!!Jo
    jojom0405 15 Replies
    • August 14, 2007
    • 00:10 PM
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  • Hi DOM. Thanks for responding. I agree that military medical care is definitely not up to par. It is so sad, especially for the soldiers that really need excellent care when they come back from serving our country! I would not have believed until I saw it with my own eyes. To answer your questions, no I am not breastfeeding (tried but couldn't do it b/c of my stress level with the spinal headache and all), no contraceptives (hate that stuff, makes me sick to my stomach, literally), I took Mobic for a while but have since stopped recently. I've been taking the klonopin for about two months now. I started taking it to help me sleep. I couldn't sleep b/c of the electrical shock symptoms which the klonopin actually seems to help with in my case. I take it in small amounts. No more than .75-1.00 mg per day. I've also been suffering from depersonalization for about 10 years and heard that klonopin can help so finally gave it a shot. It's been lifted the DP somewhat. I also currently take Vit C, Magnesium Malate, and omega3 with glucosamine. I will look more into the homepathic stuff, as you suggest.Yes, they stuck me 3 or 4 times. At one point I felt an electrical current/pain shooting down my right leg. Every oc that I've talked to dismisses this as a possible cause of my symptoms although I disagree. It would be just too coincidental for all of this to have happened after that epidural, in my opinion. So you think recovery is possible? I pray that you so.As for the WBC, right now they are at a 3.6, down from 9.6 in Feb while I was pregnant. I am worried about this as well. Especially since I've bruising easily and have the small red spots and achy bones (although the achy bones are mostly on my right side and maybe I'm confusing muscle pain with bone pain, I don't know). I haven't had any fevers though. The PCP I saw dismissed the WBC and bruising and said that it sometimes happens to women. I've been thinking about accupuncture. What should I look for in a good accupuncture clinic?Thanks again for your reply!!Jo
    jojom0405 15 Replies
    • August 15, 2007
    • 01:37 AM
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  • Don't listen to doctors. Being female, most doctors believe women are psychotic, faking illness and health problems. If a man speaks to his doctor, he is taken seriously but unfortunately, women are not. I live in Australia and in a regional website for women's health, it speaks directly of this issue and the problems women face with their GP. Regardless of what country you live in, women are never taken seriously until they have classic textbook symptoms in their doctor's face. I believe firstly you need to work out what started first and the main symptoms of what you are experiencing, if you go in with a long list, they immediately switch off. Find a doctor who is willing to listen to you and look up google with your symptoms for possible background info (don't self diagnose!). Sometimes when doctors refer you to a specialist at your request, you may not taken seriously by them and tests may not be performed correctly ie say MRI may not be administered with contrast when checking for MS. And what ends up happening is that you go around in circles for several years for nothing, with no diagnosis. Don't forget that doctors get kick-backs from pharmaceutical companies and specialists that they refer. All you do is become stressout and lose money. So I think that a woman needs to be assertive with their doctor, specific with symptoms and if you don't feel comfortable with your doctor or specialist, then change.
    Anonymous 42789 Replies
    • September 2, 2007
    • 02:03 PM
    • 0
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  • Good advice. Thank you for your reply. I definitely feel that I am not being taken seriously. Being postpartum only adds to the problem as postpartum depression is being suggested as the root of the problem. I guess that's possible but I wish that these docs would look at my health more thoroughly before simply jugding that it's just a little post partum depression and then throwing anti depressants my way as treatment. Very frustrating. Anyway, I'll keep at it until I get some answers although I am becoming very discouraged and not feeling any better!!
    Anonymous 42789 Replies
    • September 3, 2007
    • 03:19 AM
    • 0
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  • Hi.... First off congrats on the new baby!! I myself just had one 6 and a half months ago :) I would like to tell you i experienced a lot of your symptoms as well. I didnt get the epidural either!!! Maybe your symptoms arent related to that?? Although, it is a good possibility~ I was on iron supplements when I was prego and decided to take myself off after the delivery, despite what the doctors and my husband told me. I just hate taking pills and I no longer had a baby inside me to worry about. I used to get headaches, muscle spasms, weakness, extreme fatigue, head to heavy to hold up, dizziness, ringing in ears, vision changes, depersonalization, heart pounding, cold feet, pins and needles, trouble concentrating.... and so much more..... It was very scary to me considering how healthy I was before, during, and even 2.5 months after. I went to the docs and they told me I had postpartum depression mixed with postpartum generalized anxiety disorder. I was convinced it was an overactive thyroid and demanded that she test me. They drew my blood, she threw me my script of anti-depressants and sent me on my happy way......1 week later I got a call back to tell me the test of the thyroid was negative. Great!! Now what I thought? I HATE taking pills, and she wants me to take these for a year+.... I was so frustrated as I didnt even feel a slight bit depressed. I knew anxiety was definately present because I had it in my past, but this was slightly different. I havent experienced some of these "other" syMptoms before. I was desperate to find an answer so I called around to get a second opinion.. and come to find that there is a minimum of 3 month waits for all the docs around here.... Isnt that fabulous?? I need help now!!!So I went searching on the internet to try and self diagnose.... Boy, was that a big mistake. I came to my husband every day about all these "new" diseases I have.... It went so far to me telling him I had a brain tumor. Thats when it went too far and he was going to shut the internet completely off unless I agreed to stop looking things up. So, I agreed....Well, kinda... I still did it behind his back. lol. I found this article one day listing all the symptoms of low iron. All the symptoms matched mine. Well, what do ya know... all that pestering from the docs and my husband actually meant something. So, I was closed and starting taking my iron pills.... to find instant relief!! Only to find a couple days later there was only a slight relief to some of my symptoms......So, I stopped taking those after about two months, never took the anti-depressants, and feel about 85% better. I still get have difficulty concentrating and depersonalization. Besides that all other symptoms are completely gone. I know its been a month or so since your last post so let me know how youre feeling now.I think mostly what was doing this to me was anxiety. Your mind is a crazy thing and sometimes it can be out of whack. It can control you and your body even if there is nothing wrong. All I did was tell myslef that everything was ok and that I was imaging it!! I also told myself at least once an hour "You're getting better everyday in every way" ( I read it in a book). Maybe its anxiety?? You can control your mind.... It just take a lot of effort. Hope this helps :) And sorry about it being so long. I go off on tangents sometimes.
    Anonymous 42789 Replies
    • September 12, 2007
    • 11:21 PM
    • 0
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  • Hi there! Thank you sooooooooooooo much for posting your reply. Just knowing that there is someone out there going through what I'm going through makes me feel better. I've done the crazy self-diagnosis bit. For a while now I've gotten myself convinved that I have ALS! I am scaring myself silly. Since I posted last I've started taking a Vitamin B supplement based on some advice I got. That seems to be helping a bit. The twitches happen less often. Also, today I had my first accupuncture session. I'm hoping that will help. It was a strange experience but good overall. Before the doc (he's medically trained) started inserting the needles he went over my entire body and pressed on some trigger points to see what shape my nerves are in and I just about jumped off the table it hurt so bad, especially in my neck and lower back. Then he stuck needles in these points and again it hurt but only for a little bit. I was a little sore after I left but feel better now. Overall, I also came to the conclusion that I'm really contributing to how badly I'm feeling by creating more anxiety for myself by doing all these internet searches. I've tried to cut back. It's hard though when you are convinced something is wrong but you can't figure out what it is. I've never been in this type of situatin with my health before so I'm not taking it well. Anyway, I told myself that the last thing I am going to do before giving up on the medical community is to get a referral to an endocronoligist to get his opinion on thyriod, parathyroid, Vitamind D deficiency, and magnesium. From what I've been reading these things can cause the symptoms that you and I both describe. Also, I've read that sometimes the standard thyroid tests don't pick up all thyroid problems and more accurate tests are needed so again I will ask questions about that. So that will be my last effort and if it leads to nothing again then I will give it up and just concentrate on doing what I can do myself in order to feel better. BTW, did you end up taking any antidepressants? I was also given a prescription but I just can't bring myself to take them. I don't know anymore, maybe they would help. Any other new moms out there with similar problems? Would love to hear from you! I hope that you continue feeling better and I am so glad that you've been able to help yourself get to the point you are at! That gives me hope. Thanks again for replying. Like I said, it's great to know that I'm not alone. Jo
    jojom0405 15 Replies
    • September 13, 2007
    • 00:11 AM
    • 0
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  • Jo,Glad you are feeling a bit better and it sounds like you are on the right path towards healing.:) Please give this some time - it takes sometimes a very long while to feel better after having a baby. Just to tell you a bit of my story: I had severe hemorrhaging problems during the birth of my daughter(placenta abruption) and complications after my emergency C section (including two blood clots and a transfusion)...it took me well over a year to get myself back on track, but now I feel healthier than I have in years! My daughter is now nearly 3 and full of energy. B vitamins are a good choice. I highly recommend the sublingual kind, and especially Methylcobalumin B12 (this is supposed to be MUCH better than cyanocobalumin)...not sure if I spelled those correctly. Try to get a test for B12 deficiency. B vitamins can really help your mood and emotions. Good for you for holding off on antidepressants. IMO docs prescribe these meds WAY too much and they often have horrendous side effects. I would explore all other options before resorting to these. Concerning your acupuncture doc...please check and see if he is NCCAOM certified in acupuncture and Chinese Herbology. Some Western MD's are allowed to practice acupuncture with VERY little training, like 100 hours or something like that...I personally think that is bad - acupuncture and Traditional Chinese Medicine are a complex field of medicine and it took me over 2,000 hours of training. I hope you feel better with his treatment either way. I think your positive attitude will really make a difference. Also, find time to meditate, pray, and just stop for a short time each day. Every morning I take the time to say thanks and express my gratitude and it really makes a difference in how my day goes. Best wishesDOM
    acuann 3080 Replies
    • September 13, 2007
    • 01:34 AM
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  • Hi Dom! Oh my goodness! I can't even imagine what you went through bringing your little one into this world. I think that sometimes we tend to take birth for granted but it truly is a miracle and it's just amazing what our bodies go through to bring our little angels into this world. I know that I didn't take care of myself well enough while pregnant. I did all the doc's visists and all that of course, but truly mentally and spiritually I did very little, which I now regret. I think that this lack of mindfulness might have contributed to the "shock" that brith brough on for my body. When I had my first child, I prepared much more consciously and I did not experience nearly as many problems. But God bless you for what you went through. I'm glad that you were able to recover and find health and that your little one is well and thriving! Thanks also for the advice on the accupunture. This particular doctor had medical training but says that he'd rather practice accupuncture because he believes in its ability to help people whereas western medicine is often lacking and can be so invasive with so many bad side effects for so many people. He is of Chinese background (not that necessarily means anything) but accupuncture is something his family has been involved in for many years. I will check his credentials though. I didn't realize that there was a licesning board or association such as you speak of. He was highly recommened by a friend whom he helped very much so I just went for it because I'm frustrated and want to feel better!! It's a start and I'm hoping and praying for the best. Also, I think that you are so right about having a positive attitude. I am trying! I'm getting better at that. Slowly though at times. However, my hubby just returned home from Iraq today so I think that will help tons!!! Again, thanks for all the info!! Wishing you all the best!Jo
    jojom0405 15 Replies
    • September 13, 2007
    • 01:51 AM
    • 0
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  • Okay, I don't know what happened but I attempted to post a reply to you DOM but it's not showing up. Maybe it will appear in a day or two. Anyway, thank you for the info and for sharing your story with me. I'm glad that you were able to pull through and that your family is doing well now! I will look into the credentials and the Vitamin B. Thanks again!Jo
    jojom0405 15 Replies
    • September 13, 2007
    • 01:54 AM
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  • You are very welcome, Jo.:) And give your husband a big hug and big THANK YOU from me for his service to our country! Glad he is back. Please also try to get him to see your acupuncturist - it is very helpful for Post Traumatic Stress Disorder as well as any pain he may be experiencing. Best wishesDOM
    acuann 3080 Replies
    • September 13, 2007
    • 06:53 PM
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  • This post is mainly for AccuAnn. Just wanted to get your opinion about something. I've had 3 accupuncture sessions to date without much success. I'm not sure if I should continue with this treatment. It is so painful, especially in my neck and back. I just don't know where to seek help. I tried getting a referral to an endo with no luck. They would not see me. Anyway, I know your area of expertiese is accupuncture, so any advice on that? Thanks! Jo
    jojom0405 15 Replies
    • September 27, 2007
    • 02:18 AM
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  • This post is mainly for AccuAnn. Just wanted to get your opinion about something. I've had 3 accupuncture sessions to date without much success. I'm not sure if I should continue with this treatment. It is so painful, especially in my neck and back. I just don't know where to seek help. I tried getting a referral to an endo with no luck. They would not see me. Anyway, I know your area of expertiese is accupuncture, so any advice on that? Thanks! Jo Jo,Acupuncture should NOT be painful - is your pain just during the treatment or does it linger afterwards? You mentioned your acupuncturist was of Chinese background - often they use a much more agressive needling technique, which can be more painful. I am not a fan of this technique as I feel it will turn off patients seeking treatment... My feeling is if you are not feeling better after your treatments, then perhaps you should discontinue...maybe a different practitioner would help. Does your practitioner only treat you on the back? Does he check your tongue and pulse? Does he use a heat lamp or moxa smoke? I wish I could offer you more help. Perhaps you would respond well to energy healing - don't know where you live, but if you post I will see what I can find in your area. Best wishesDOM
    acuann 3080 Replies
    • September 27, 2007
    • 06:33 PM
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