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7 Replies
nologic - July 13

Hi, I am a 52 yr old woman who has been known as the bulldozer of the family most of my life.Late Jan 2013 I began having painful electrical spasms down both arms,when coughing or sneezing.On Feb 12th 2013 I went to get out of bed and collapsed on the floor.It was very hard to move them and I couldn't make them stand me up.Once I was able to stand I tried to take a step,all they did was drag then flip over it was like I was trying to walk on using the tops of my feet.Once I got that better It took me about 45 mins to finally wobble to the door about 10 feet away.Two days later I went to the ER and was told to see a neurologist asap.Nine days later both arms did the same thing.My walking had improved somewhat,but continued to be extremely weak.Not numb,and there was no pain other than with the spasms.After waiting until May 9th I had a MRI done of my brain.That came back normal.On July 2nd.I had an MRI of my complete spine done.The results of those my dr said was DBD.Meantime both my hands and fingers went from just the index ones at first became extremely sensitive to temp changes,and tingled constantly,to now both hands and fingers feel like they have been soaked in water and thick.The creases of each finger feels tight.And the skin just under each nail is extremely tight and makes my nails look like they have a white strip across them.They also feel very spongy and about to have hot flashes,just on my hands.I drop things like never before too.And have also been getting small spasms just on the tops that feel like ripples,but no pain.Is it me?Or does this sound more like FM since I have no pain in any of my joints? I will wake with bad hip bone pain if I sleep on my back at times,and almost every day I will feel numb places in 4-5 different places on my back,but other than that I have a normal assortment of aches brought on by what I do,like landscaping and yard care. Thank you Any respones are most needed.


conniehurts - September 19

what is DBD?


nologic - September 27

Thank you for your question.DBD Is degenerative bone disease. I have still not found out what is going on with me.I recently had a EMG and NCS test done on my legs.This test is supposed to be able to tell if there is a pinched nerve.The results came back normal which has really got me confused now.I have had an extremely hard time trying to get the doctors I have seen to understand what I have been describing to them.Now they want more blood tests done to determine if I have arthritis.I am like this is a joke. If my understanding of arthritis is that it is a painful condition that affects the joints, then they are wasting their time.The joints in my legs and hands are without pain.They just do not seem to hear me when I have told them that when I first get up in the morning,it is very hard to get them moving.After a few moments it does become easier to walk, but I am still not walking right.I cannot walk fast, trying causes me to lurch forward.When I sit down for a few moments and then go to get up, it is like getting out of bed all over again.Sometimes it's even harder to walk.And, the longer I walk, the harder it becomes to walk.I do not get tired or exhausted.I get weaker.I have been asked if I experience tingling, or numbness or pain in my legs and I have said no each time.Sometimes I do not know how to feel anymore.Maybe if my tolerance of pain wasn't so high,I could be more descriptive.But most pain has to be real intense and last for some time for me to think about bringing it up to my doctor.Usually I forget.


conniehurts - September 27

I have had similar problems with me legs for years. It does seem to be better most of the time but not always. I also used to think that I had a high threshold of pain but finally realized that when you have constant pain all over you learn to turn it off to some degree and its hard to explain to a dr when I come up with a new pain that is different enough for me to actually realize its there. Recently I went 18 weeks with no use of my right hand. there was no pain until it started working again to some degree and my wrist joint as well as pinky and ring fingers have severe pain in the joints as well as swelling and the fingers are beginning to look like rheumatoid arthritis cuz they wont straighten out and are swollen and "twisting" at the joints. The one thing I have discovered in my journey with FM is that it comes with tons of symptoms that we are not told about! The weird symptoms come and go with no rhyme nor reason too. My legs and ability to walk are much better since I have been on 125 mcg Fentynol patches. The big problem now is that when I do get another symptom all the drs can see or hear is that I am on the dreaded OPIATES and lots of them. Sadly drs know little or nothing about pharmaceuticals and what ones are safe not to mention what works and what doesn't. Those answers are not the same for everyone. The first thing they need to know is that we know our bodies and know when something isn't right. That we are not idiots and as pain patients it doesn't make us all drug seekers, tho we do seek relief for our pain! Sadly we often go thru many unnecessary tests that don't always show what is really going on! I had an emg on my hand then got a call from the dr the next day saying he saw something he didn't like and to come back in 2 weeks. When I went back he said he just wanted to see how I was doing. Once again the next day he called again telling me he needed to do more tests. for now I am refusing cuz its looking like he is milking my insurance! Years ago I had an emg done locally and then went to Seattle to a specialist who looked at the emg results and said "I hate to say anything against another dr but he could not have possibly gotten these results from what he did." He hadnt done the entire test for one! If I were you I would find another dr to have the emg repeated. After all these years I am getting pain in my joints where it used to be just the muscles. The way your legs and feet are doing I would go to a dr specializing in MS and go from there. There are some very good drs in Seattle Washington at one of the major medical centers, sadly I cannot remember the name of the center. Its a womans name. Sadly my FM often keeps me in a fog where I cant pull up words that I need :-(. Good luck to you and let me know what you find out. try writing down ALL symptoms no matter how little they are. It will help you to not forget something that could be important! I hope I have helped in some way. Gentle hugs. Peace Connie PS it is in no way unusual for women our age (I am 58) to have bone loss! It comes with ageing!)


nologic - September 28

Hi Connie, I have pasted a copy of an email I recently sent to a healthgrade website about the neurologist I had seen at Arrowhead hospital.Original Question/Issue: Hi
I am emailing you because I do not know what else to do.In Feb of 2013 one morning I went to get out of bed and collapsed. It was several minutes before by using sheer will I was able to stand.But when I tried to take a step,my legs were like dead feeling and where I tried to move them,once they touched the floor my foot would just flop over on it's side.I was not able to lift either of my feet very high so mostly they would drag.On the 19th I went to my towns emergency room,where the doctor had a CT done and x rays.And a blood test.A neurologic motor exam was done on my legs and the ER doctor scored my left lower extremity 1+/5+ and my right lower extremity 1+/5+. Nine days later,both my arms did the same thing It was almost two months before I could stand long enough to shower..Nothing like this has ever happened to me before.But as of today's date, I can say that how far I have come in regards to my trying to recover from this, I can proudly claim
that I have done myself. My arm strength is about 65% back to the way they were prior to this happening.As for my legs, cannot seem to get them beyond the point they are at now. I have had so much difficulty trying to get the doctor's I have seen to listen when I say that my legs are not in pain.They do not tingle, and have not felt numb at any time. They are weak.When getting up each morning, it is very difficult to walk.But usually after a few minutes gets somewhat easier.Any time I sit down through out the day, even if only for a couple minutes, it is like getting out of bed in the morning all over again.But sometimes it takes longer. I suppose if I were to be pictured in a cartoon like animation,my legs would be stepping high then low,maybe to the side, but never quite right.I can find humor in that.Personally I do not care how they look as long as they are moving me forward.But to the point now. I am currently an arrowcare medical benefits member..That being said, I do
understand I am not too high a priority.I am allowed only one referral at a time.It takes around 30-45 days for it to be approved.Then anywhere from 20-30 days for an appointment to be scheduled. So when this was approved for me to see a neurologist, I was so relieved. On the day of my appointment I read the confirmation letter I had been sent and I read it was to include the testing of my hands also and not just my legs.And I thought (yes!) finally, the ball was in motion.Because you see, all I have ever wanted to know was what happened..and to be told what I was left to work with.I had no hopes for a quick fix.But after the tech was done doing the EMG and I (he was great) was waiting for the neurologist to come in, I began to recall all the tech had done.While on my stomach I counted him testing my left leg three times and twice on my right.When the doctor came in,he introduced himself to me and shook my hand.The first he said then was, "so, you have
been experiencing tingling and numbness in your legs?" I said "no". He said," you have been having pain in your legs" I said "no, no pain.Just weakness".He asked when this had begun and I said Feb 12,2013.I attempted to tell him that it had happened to my arms as well, when he cut me off by saying,"I am not here to do your arms or hands.Just the legs". Then he asked me how far did I think I had recovered.And I said, well if you had seen me a couple days after this had happened, I am positive you would see me as being a mess. But I said that because I am not a quitter I made myself move forward.But felt I had gone as far as I could and was not getting any better at this point.He then asked me which of my legs I thought was the weakest one and I said my left one.And that was the only leg he tested.Not only that but while the pin was in my thigh he kept rubbing both sides of my thigh roughly and saying"MOVE" "PUSH YOUR FOOT" PUSH IT HARDER" It was
when I was reaching for the bed rail for leverage I said,"you are hurting me". he said"No, it's okay,relax now.there there". After that, he stood up and said your results will be ready in two weeks, and was gone.Maybe I am all worked up over this but I cannot help but feel that it was like he was forcing my nerves to react so that the results would indicate that the test results would be seen as normal. Like maybe he thought I was only there trying to get a disability check.Whatever the case may be, somethings wrong with this picture.If you have read this email this far, I have to say Thank You for taking the time.For letting me vent.I am an average person,I do not expect special treatment.I do however expect to be treated as a person.This doctor has no idea how much he has crushed my faith in doctors.Though I am an optimist,my recent experiences are really taking a toll on me.Again,Thank You,
You are so right about the mass amounts of symptoms.My beliefs are this;When a doctor hears a patients individual description or explanation of how they feel,and to the doctor it does not fit in with the patients current illness or disease, an (open) symptom is born.By open, I mean it can and will be applied to any and all illnesses, until a pattern begins to form, and doctors then assign it to a specific illness or disease.Yet it will also continue on as an (open) symptom as before. I think that if doctors would just listen better they would see that it is not the symptoms they need to focus on. It is the individual person.Example: Say you and I had cervical cancer.Both of us stage 4.Now, take away all our emotions.Our individual descriptions of how we felt from day to day would be pretty close to identical.But when you put our emotions back,we have two entirely different perspectives, and therefore must not be compared so by doctors.If a person lives their life day to day.Never dwelling on or worrying about how long they will live,(That's me) they will be less likely to panic, or even feel a deep connection to how truly amazing our very own body is a living,breathing,talking and walking construction of amazing abilities.And then there are those who are very much in touch with their bodies.Who constantly strive to be as healthy as possible.Will experience a much higher level of understanding when somethings not right with their body.If there is anything here in what I have written that would help you in any way,feel free to own every word and use it as your own.And yes, of course you have helped.Take Care. P.S. I am on facebook. noooologic


conniehurts - September 28

I have had EMG on my legs and feet 3 times now and my hands and arms twice and I was NEVER told to use the muscle while testing. That dr sounds like he not only didn't listen to you he didn't give a rip what is wrong. I am so sorry that you have such awful medical insurance. Sadly we will all be getting that same type of treatment, if not worse, with the government trying to take over a drs job without the proper medical training! My hubby has FAP (a genetic form of colon cancer) and the local dr said he would just remove the entire colon, give him a bag and that would be the end of it. He was so wrong! We went to MD Anderson medical center (part of University of Texas medical centers) where they saved 8 inches of colon, so no bag and told him he must be tested every year and not just his colon. They check his stomach, abdomen, skin, thyroid, brain and not sure what else because the disease can cause cancer in all those places. My point is that some drs are excellent, some good, some bad and some just don't care! Your dr sounds like the one that did my first EMG who told me that I was a drug seeker cuz I wasn't dressed appropriately (a midcalf length dress and nice shoes)and that you cannot get headaches from head, neck and back injuries. you need another dr! I do hope they can figure out what is wrong with you and fix it. My feet and legs do what yours do sometimes and I just mark it up to FM even tho I have all the symptoms of MS. Bone density will not cause your legs and feet not to work! I want to donate my body to science when I am done with it so that they can hopefully figure out all the things they havent been able to put a name to and help someone else! I have a FB account but do not use it. My dial up service is very slow and its too hard to sit and wait for FB to do its thing. I will try to put my email in this in a manner that the forum will allow. eskimobirdlady at yahoo dot com.
Gentle hugs. Peace Connie


nologic - September 29

Hi Connie, The doctor put me on a pill that is generic for neurontin. 300mg. And said to take them three times a day.Before going to bed I took one.And had absolutely no idea who I was in the morning.My boyfriend said my only response to anything he said was "huh?" I felt like a zombie,I looked and walked like one.The only thing I did not do was try to kill and eat anyone.I never took another pill.But it was three days before I felt myself completely.I took the pills to the doctor and after explaining,he took them back.I said it did take the "pain" I sometimes feel in my lower back away.So he gave me 100mg. They are about half as bad and have only taken 2 so far.Two weeks apart.Have you ever woke to find your lower back in pain but once you have sat up the pain is gone but your back is now numb?That happens a lot with me.Or sometimes I will watch t.v. in the room and lay across the bottom of the bed..forgetting I am not suppose to lay like that and most of my back will go numb and my neck will start hurting to the point that I cannot look to the left without turning my body.Looking to my right is easier, but only to my shoulder.Any further I have to turn my body too.Lets keep on comparing..not that we are trained medical people..but this is so much better than feeling like I am diagnostic assembly line where the next tech I will see has no idea what the tech before him did.LOL Peace and Take Care. Our lives are like the sands in a hourglass.


conniehurts - September 29

It sounds like you could have some pinched nerves. Sadly most of the surgeries or PT done on pinched nerves just cause more problems, at least in my experience it has been that way. As I have said before I have mos pain issues under control but am having problems with body parts quitting like y our feet and legs do. My hubby is gone 15 hours a day and the couple hours he has when he is not sleeping he is doing chores. I cant even go outside alone and don't know anyone locally who has the time or desire to be friends (I don't drive which doesn't help any) and I am so lonely I cant stand it. If we don't find a way to get out of Alaska this coming summer I am gonna lose what little sanity I have left. All of my hobbies other than reading require the use of both hands (crochet, beadwork, knitting, weaving and yarn spinning) which isn't possible right now since I haven't had proper use of my right hand for months now (18 weeks it was totally dead from the wrist down but getting better)so I am bored to death. Hubby is afraid to move since jobs with insurance are getting few and far between these days and just one of my prescriptions is over $2000 a month! I told hubby tonight that it doesn't do me any good to be able to get out of bed without help (4 yrs I couldn't from the pain issues)if I cant do anything. Sorry for the pity party I am just having a rough night. Gentle hugs. Peace Connie



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