Discussions By Condition: I cannot get a diagnosis.

Tired of crying, being in pain & being dismissed by doctors

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • May 22, 2009
  • 07:30 PM

The title pretty much sums me up. I've been to 1 neurosurgeon, 1 neurologist and what seems like a dozen doctors in between. I do have an arachnoid cyst (ping pong ball size) on my right parietoccipital lobe, whether or not it's contributing to problems is debatable. What I do know is that I deal with headaches that take my breath away (I do have prior experience with migraines, which these are NOT) but can't get the doctors to listen to me when I tell this. I've been on 3 (or 4) different migraine medicines, none of which do anything , but the doctors continue to brush it off with "you just have migraines, end of story". I was dx'd with depression about 4 yrs ago, which is another thing they just tag as having migraines. On top of that I am in consistent pain. My joints hurt (knees, hands, right hip), my back hurts every day...some days are worse than others. The last couple days have been particularly painful. I fall a lot. And hard. I do not have vertigo, the room never spins. the best way I can explain it to my hubby is it's like when you slam the breaks on in the car and stop really abruptly. I'll be in mid stride and then BAM! I never remember falling, just hitting the ground. In the last year I have fallen twice just crossing my living room and messed up my back pretty significantly. In February I fell and broke my ankle while walking across a parking lot. And last Friday I fell just walking in the door of Walmart with my husband. This last time I actually fell forward (I usually seem to fall backwards) and fell on my knee. I have swelling on my left knee and along my spine. Doc says that my muscles are leaking lactic acid and has me on anti inflammatory and muscle relaxer. I'm 32 and sick and tired of feeling sick and tired. If anyone has any insight, I'm happy to hear anything :)

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7 Replies:

  • Please look up Arachnoiditis. A good site that will come up when you google it is cofwa. Has alot of info including reports from Drs. Read all you can on it & if need be, print articles & present to Drs for confirmation.
    Anonymous 42,789 Replies Flag this Response
  • The title pretty much sums me up. I've been to 1 neurosurgeon, 1 neurologist and what seems like a dozen doctors in between. I do have an arachnoid cyst (ping pong ball size) on my right parietoccipital lobe, whether or not it's contributing to problems is debatable. What I do know is that I deal with headaches that take my breath away (I do have prior experience with migraines, which these are NOT) but can't get the doctors to listen to me when I tell this. I've been on 3 (or 4) different migraine medicines, none of which do anything , but the doctors continue to brush it off with "you just have migraines, end of story". I was dx'd with depression about 4 yrs ago, which is another thing they just tag as having migraines. On top of that I am in consistent pain. My joints hurt (knees, hands, right hip), my back hurts every day...some days are worse than others. The last couple days have been particularly painful. I fall a lot. And hard. I do not have vertigo, the room never spins. the best way I can explain it to my hubby is it's like when you slam the breaks on in the car and stop really abruptly. I'll be in mid stride and then BAM! I never remember falling, just hitting the ground. In the last year I have fallen twice just crossing my living room and messed up my back pretty significantly. In February I fell and broke my ankle while walking across a parking lot. And last Friday I fell just walking in the door of Walmart with my husband. This last time I actually fell forward (I usually seem to fall backwards) and fell on my knee. I have swelling on my left knee and along my spine. Doc says that my muscles are leaking lactic acid and has me on anti inflammatory and muscle relaxer. I'm 32 and sick and tired of feeling sick and tired. If anyone has any insight, I'm happy to hear anything :) Hi Sagemorse, http://forums.wrongdiagnosis.com/showthread.php?p=177503#post177503 You just might have b12 deficiencies. We can help you set up a short trial that will make it very clear to you if it is a b12 deficiency. We can tell you what the actual effective brands are and how to take it for effectiveness. Without this information failure is likely as 80% of brands don't work adequately and most people take them in an almost totally ineffective way.
    Freddd 3,576 Replies Flag this Response
  • Thank you for all your replies!! Fred I actually started the B12 about 3 yrs ago, but nothing seems to have changed, although I am daily with all my necessary vitamins. I don't have a cell phone or even a cordless (however I do NOT have a rotary dial phone...lol) just a good old corded phone & we have no cell towers nearby...closest one to me is about 8 or 9 miles away from our house. And tell me about frustrating having 2 neuro docs say that it's basically "all in my head"...um DUH!!! Since posting this thread, I ended up in the ER over last weekend because my body just stiffened up almost completely. I couldn't move my head tothe right because my neck and lower back had me in excrutiating pain, which then shot right down my right leg. They saw me, gave me some meds & tomorrow I have to go see an Orthopaedic Spinal Clinic and am hoping for a referral to this really good neursurgeon up in Kentucky that knows what he's talking abut when it comes to arachnoid cysts. Please know how much I truly apprecate each of you taking the time to even respond to me!!!
    Anonymous 42,789 Replies Flag this Response
  • Thank you for all your replies!! Fred I actually started the B12 about 3 yrs ago, but nothing seems to have changed, although I am daily with all my necessary vitamins. I don't have a cell phone or even a cordless (however I do NOT have a rotary dial phone...lol) just a good old corded phone & we have no cell towers nearby...closest one to me is about 8 or 9 miles away from our house. And tell me about frustrating having 2 neuro docs say that it's basically "all in my head"...um DUH!!! Since posting this thread, I ended up in the ER over last weekend because my body just stiffened up almost completely. I couldn't move my head tothe right because my neck and lower back had me in excrutiating pain, which then shot right down my right leg. They saw me, gave me some meds & tomorrow I have to go see an Orthopaedic Spinal Clinic and am hoping for a referral to this really good neursurgeon up in Kentucky that knows what he's talking abut when it comes to arachnoid cysts. Please know how much I truly apprecate each of you taking the time to even respond to me!!! Hi Sagemorse, If you just picked up any old b12 the odds are 1000 to 1 against you that it would do much of anything. We have found that in order for b12 to be very effective that a person has to take the right type, the right brand and use the right technique. Paying attention to those three factors can make b12 100 to 10,000 times more effective. That changes everything. I took the wrong brand of the wrong kind for the wrong way for decades and went deeper and deeper into deficiency sufferring deep damage and almoast dying. Less than 10 minutes after starting one of the right brands of the right type done the right way my life was changed. Isn't it about time to find out what actually works? Come over to the b12 forum posted in an earlier post and become educated about what works. The docs used to tell me it was all in your head (IAIYH). With the correct b12 I have healed. There was considerable neurological damage in my head.
    Freddd 3,576 Replies Flag this Response
  • If in fact you do have Arachnoiditis, Unfortunately, this condition can cause serious disability. It is never easy to live with chronic pain. Not only does it adversely affect your body, it can also cause mental stress as well. Sufferers of arachnoiditis are encouraged to join support groups or find other therapeutic outlets for stress. Treatment methods should be focused on pain relief and maintaining quality of life. More research is needed about this and other chronic pain conditions so that someday a cure may be found.Have you tried the use of a "tens unit" perhaps it will help out with you pain.. There is no cure for arachnoiditis. Treatment options are geared toward pain relief and are similar to treatments for other chronic pain conditions. Some examples include the following:Pain medications such as NSAIDs, corticosteroids (orally or injected), anti-spasm drugs, anti-convulsants (to help with the burning pain), and in some cases, narcotic pain relievers. Some of these medications may be administered through an intrathecal pump which, when implanted under the skin, can administer medication directly to the spinal cord.Physical therapy such as hydrotherapy, massage, and hot/cold therapy.Transcutaneous Electrical Nerve Stimulation (TENS) is a treatment in which a painless electrical current is sent to specific nerves through electrode patches that are placed on the skin. The mild electrical current generates heat that serves to relieve stiffness, improve mobility, and relieve pain.Spinal cord stimulator is a device that transmits an electrical signal to the spinal cord for pain relief.Best of luck to you!!
    MK1987 35 Replies Flag this Response
  • The title pretty much sums me up. I've been to 1 neurosurgeon, 1 neurologist and what seems like a dozen doctors in between. I do have an arachnoid cyst (ping pong ball size) on my right parietoccipital lobe, whether or not it's contributing to problems is debatable. What I do know is that I deal with headaches that take my breath away (I do have prior experience with migraines, which these are NOT) but can't get the doctors to listen to me when I tell this. I've been on 3 (or 4) different migraine medicines, none of which do anything , but the doctors continue to brush it off with "you just have migraines, end of story". I was dx'd with depression about 4 yrs ago, which is another thing they just tag as having migraines. On top of that I am in consistent pain. My joints hurt (knees, hands, right hip), my back hurts every day...some days are worse than others. The last couple days have been particularly painful. I fall a lot. And hard. I do not have vertigo, the room never spins. the best way I can explain it to my hubby is it's like when you slam the breaks on in the car and stop really abruptly. I'll be in mid stride and then BAM! I never remember falling, just hitting the ground. In the last year I have fallen twice just crossing my living room and messed up my back pretty significantly. In February I fell and broke my ankle while walking across a parking lot. And last Friday I fell just walking in the door of Walmart with my husband. This last time I actually fell forward (I usually seem to fall backwards) and fell on my knee. I have swelling on my left knee and along my spine. Doc says that my muscles are leaking lactic acid and has me on anti inflammatory and muscle relaxer. I'm 32 and sick and tired of feeling sick and tired. If anyone has any insight, I'm happy to hear anything :)Dear Sagemorse - you have my sympathy, my poor darling! It's very scary because it seems so random, you can't control it so you don't feel safe doing anything, which affects your mental & emotional health too. I have had 2 falls where I fell backwards just as you describe - the last one I was walking forwards, mid-stride & was forced backwards hard, hitting my headon the floor - went to ER - CT scan normal. I had another fall last year when I was just standing in a hotel room looking at a magazine, and I was forced to the floor with great force from my shoulders. I wonder if you have any information about this since you posted in 2009, or a diagnosis? I was diagnosed with PolyMyositis in 2006, it is a muscle weakness autoimmune condition, but no-one I have spoken to, Drs, Specialists or patients have had the same experience: I often wear a bike helmet when walkiing on paving or hard surfaces, just in case. It was amazing for me to read your post, as it has been a mystery since the exact same thing happened to me in February, just as you describe. Please let me know how you're doing. God bless, be well, get well, stay well. xx
    Anonymous 42,789 Replies Flag this Response
  • your post is quite old so i dont know if you still read this site or not. you may have had a differential diagnoses already. but the symtoms that you discribe especially the freezing when you walk are classic parkinsons symptoms. parkinsons is difficult to diagnose as there is not a test that proves it, not everyone gets tremors either. but muscle and joint pain are also classic symptoms as are headaches and deppression, time will tell if you have it, it will get worse. if you dont smoke you are in the risk group, smokers dont usually get it as nicotine increases dopimine in the brain. people associate it with old age but you can start young with it. hope this helps you and i pray it isnt. good luck x
    pamjay 8 Replies Flag this Response
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