Discussions By Condition: Medical Stories

I'm using a wheelchair now.

Posted In: Medical Stories 9 Replies
  • Posted By: butchiesmom
  • July 9, 2007
  • 04:39 AM

I timed out and lost everything written in the first version of this message. My balance is bad, my legs give out and I'm getting pressure behind my eyes almost everyday now. I'm not one to get headaches until recently.

Since I don't want to time out and lose all this again, I'll try to be short.

It started with a slight loss of balance, progressed to jerking backward as if I lost my balance, to my legs collapsing without warning. My neuro has sent me to various specialists and I think I've had almost every procedure which can be done. MRIs showed spurring in my neck, a pinced nerve, compression fractures, (surgeon said Schmores (sp) node because of soft bones from osteopenia. I, also, have arthritis in my lower back, asthma, trouble with a fuzzy, round spot in both eyes at times, obstructive sleep apnea and hyperreflexia. I had a nervous breakdown over 10 years ago, and cut for a few months but haven't in about 9 years.

It's gone to sometimes violent spasms now, fortunately they're more frequent with the pressure behind my eyes and leaves completely when the pressure does.

I'm using a cane or walker or the wheelchair to get around, depending on the day and the spasms are bad enough they're occuring when I drive so I've had to stop that. I'm afraid I'm not going to be able to stay alone while my husband works before long.

The strange thing about all this, I get intervals of a few days to a few weeks, where I have almost no symptoms at all. Unfortunately, when they return, they're worse.

Any thoughts? I can answer any other questions you have about what's going on.

My frustration level, after 5 years of tests and still no diagnosis, is high. I would like to walk to the post office again and ride my bike.

Gail

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9 Replies:

  • My balance is bad, and my legs give out almost everyday now. I'm not one to get headaches, but have been getting pressure behind my eyes. It started with a slight loss of balance, progressed to jerking backward as if I lost my balance, to my legs collapsing without warning. My neuro has sent me to various specialists and I think I've had almost every procedure which can be done. MRIs showed spurring in my neck, a pinced nerve, compression fractures, (surgeon said Schmores (sp) node because of soft bones from osteopenia. I, also, have arthritis in my lower back, asthma, trouble with a fuzzy, round spot in both eyes at times, obstructive sleep apnea and hyperreflexia. I had a nervous breakdown over 10 years ago, and cut for a few months but haven't in about 9 years. It's gone to sometimes violent spasms now, unfortunately they've become more frequent. Sometimes I will also have the pressure behind my eyes and when the pressure's gone, the spasms cease. I'm using a cane or walker or the wheelchair to get around, depending on the day. I saw the chiropractor today and since the spasms are starting to occur while I'm driving he's advised me to stop driving. I'm afraid I'm not going to be able to stay alone while my husband works before long. The strange thing about all this, I get intervals of a few days to a few weeks, where I have almost no symptoms at all. Unfortunately, when they return, they're worse. Any thoughts? I can answer any other questions you have about what's going on. My frustration level, after 5 years of tests and still no diagnosis, is high. I would like to walk to the post office again and ride my bike. Gail Though it seems like things get worse when I'm tired, it's not always so. After a very bad day of spasms and falling, I'm exhausted and sore the next. If anyone has anything like this, I would like to hear from you.Gail
    butchiesmom 6 Replies Flag this Response
  • Went to the optomologist today for a checkup and during the field test, looking in a box with random blinking lights, the spasms started up again. Every time a peripheral light blinked, it triggered another spasm. I was miserable by the time the test was over. It was the first time I was able to say something definite triggered the spasms. The doctor asked if they were seizures but I don't think so even though that's exactly what they look like.
    butchiesmom 6 Replies Flag this Response
  • Please read "Want answers, read here".Frui.
    Eatafruit78 960 Replies Flag this Response
  • You may have saved what's left of my sanity!I started reading and clicked on links and started reading symptoms on the hummingbird site. Then I started whispering, "Oh, my God!" I didn't stop whispering it (my husband's sleeping in the next room) until I reached the end. I see my neuro on the 23rd. If she won't listen to me, I'll have to find one who will! It's too much of a coincident and there's too many similar symptoms for me to just blow this off. Thanks,Gail
    butchiesmom 6 Replies Flag this Response
  • You are not alone- there are many of of who have been sick. I don't want to overwhelm you with information. Basically, there are treatments and there is research but doctors are not paying attention.Lyme disease, mycoplasma infection, toxins stored in the body are the real reasons why we fall ill.Please read the book "Never Be Sick Again" - written by MIT grad. Dr. Ray Francis. It will explain why our bodies get sick because they store toxic chemicals. I read this book when I was bed ridden. Instantly I got 10% better just by following the basic advice. It is an eye opener.Read about NAET. There is a campaign to discredit NAET going around the internet and this forum but this is the only method known to deal with many of the neurological symptoms. The person who found the hummingbird website(Mommy Cat), she is using Bioset- which was developed by a student of NAET.There is also Jaffe Mellor Technique- it is good for everything they claim, except allergies- allergies are better dealt with NAET.Best,Frui.Best
    Eatafruit78 960 Replies Flag this Response
  • Dear Gail....I have been in this forum since the end of April this year. I was symptom checking on google when I came across the hummingbird site.I wrote on my thread that if anyone was having symptoms like mine that they should check out the himmingbird site.I then went looking around the forum. What I found 'SHOCKED" me. I was reading threads FILLED with symptoms similar/same as mine. I was overwhelmed. I am a nurse, I recognized clusters of symptoms.I then proceeded to post the linkk for the site to hundreds, if not thousands. I was SLAMMED by many and even turned in to the moderator of the site for "spamming". I was a bit insistent with some people because they just weren't seeing the big picture as I was. I was banned from the site for a month as my punnishment for giving people information that they were asking for. The problem was, it was not the information they "wanted to hear" so I was constantly attempting to defend myself from others who were trying to "debunk" my efforts.The hummingbird info told me that ME (we call it CFS in the USA), was contagious like a flu and could even be spread by respiratory contact.I WAS TAKEN ABACK to say the least. I thought "How many patients have I taken care of that may have had ME and noone knew it? How many times had I been exposed?Well some took my advice and read the pages. Others didn't. There were a few girls in this forum who realized in fact that ME is what they had, or at least it was a possibility. We have researched information and have "evolved" and been "enlightened" on many levels. It has been a wonderful experience in my life to be honest. I am honored to be among these women.Our research now has taken us in the direction of mycoplasma related infections, which CFS is one.My heart sings to know that my work in this forum is still helping others. I just recieved e mail from another woman in Florida yesterday. The cirlce is growing Gail, and you are welcome to join. I always say 100 heads are better than one. I would have never learned what I have in the past few months if it were not for angels. We have been colaborative in our efforts and have had a little help along the way.I wish you only well Gail and may you be blessed always...a new friend...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • I looked, but didn't see this was contagious, but it was also two am and my brain was already sleeping. I was worried about those with whom I come into contact with including my husband, children, grandkids and my family. Are they in danger? My list of diagnosis is long: obstructive sleep apnea, asthma, rosacea, osteopenia, empty sella, essential tremor (initially parkinson's almost 4 years ago), arthritis in my spine, pinched nerve, hyperreflexia, spurring in my neck, I had a severe (and I mean severe as in I had to redefine who I was) breakdown and still have bouts of depression.They still have no idea why my legs collapse under me or why my balance is bad (I floor surf quite a bit, a pro actually, haven't fallen off the floor yet, lol), and now the spasms, which started getting bad when in therapy and they started working on my neck.My chiropractor can trigger the spasms while working on my neck and they have gotten worse in the last few months. And, now I have the connection of the lights in the field test triggering them.The weird thing about all of this is I will get a sort of 'vacation' of several weeks or days when I am almost fine. My problem will be mostly balance and even that isn't bad. When it starts again, it's worse.I had a nerve block last month. It lasted two weeks, no problems, again, not even balance, I think. The swelling my lower back, which I didn't know I had, went away, then balance problems and everything else came gradually back.What scares me the most, which I haven't mentioned or noticed until a few days ago, is my abdomin. Almost twenty years ago, I had a tumor which they found when doing a hysterectomy. I had gained inches in my waist, yet my legs and arms stayed mostly the same. I'm 5'2" and weigh around 140 pounds. I'd lost over 50 pounds around the time I was diagnosed with PD, and went from a tight size 18 to size 6 and around 118 pounds. I'm still wearing size 6 and small tops yet, have gained around 20 pounds. Something's not right.I can cope with everything else, I have been for 5 plus years now. This last, I don't know. On top of everything else, which as a medical professional you've probably seen, when doctors see my depression medicine, and the scars on my arms from the time when I cut (which are white and obviously very old) instantly they stop listening to what I'm telling them and draw their own conclusions.My neuro's partner, whom she asked me to see for consult, saw the meds and the scars and I could see it in his eyes. When I saw her again, his conclusion was manic depression, I told her I had acute depression not that. My psychiatrist, when I told him, agreed and said he would call her when I told him she was going to ask him for a report.When I read your message, last night, I sent a email to my sister-in-law, a LPN and plan to send on to my new sister-in-law, an OR nurse. I'm not a hypo or am I exaggerating anything. Something's wrong. Anyone, including my chiropractor, can see it. I'm printing out the hummingbird paper I downloading and showing my husband when he comes home tonite.Sorry this is so long. I hope I didn't time out again.Gail
    butchiesmom 6 Replies Flag this Response
  • Please go to NAET.com and read the testimonials. All what you said sounds way too common to me. I have been doing nothing but research on how to cure myself and I am 97% healthier. The colapsing of your legs- I have seen that on myself and a co-worker. Don't worry about infecting other people- everyone is sick. It is just that if you have many different infections you are sicker than those with just a few. Long term damage can be reversed to certain point with NAET.Jaffe Mellor technique is recommended for your back. Pain= infection.The neurological symptoms are usually the after math.Your family need to detox and take supplements. I take rounds of Oil of Oregano- every so often. When I go to buy my potent herbs to kill pathogens- the shelves are always empty. People are consuming them and treating themselves. After 15 NAET visits I am a new person- but I still need 2 more treatments.Frui.
    Eatafruit78 960 Replies Flag this Response
  • Gail, Eatafruit78 is right. I have gone to 4 Bioset treatments and my symptoms are better. much better. I'm a nurse and it was shocking to me to say the least. Western medicine is not 'getting this" and only treats us with medicine to dull the pain and mask the symptoms. We are sick. We are not hypochondriacs or all depressed. WE ARE ILL.You are not alone. Please take fruity's advice and try NAET, Bioset. It does help. So does the Oil of Oregano. They used to use it to clean instruments in surgical operating rooms before we created chemicals for that.Hope you continue to do well. Please know that there is a lot of conflicting information regarding ME/CFS. Your doctor has probably never heard of ME but will know "something" about CFS.Be well...mommy cat
    mommy cat 1654 Replies Flag this Response
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