Discussions By Condition: I cannot get a diagnosis.

Many symptoms Dr.'s clueless - It's not all in my head!!!!

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • April 14, 2008
  • 09:02 AM

Here's my story a bit long so feel free to go to-
List of numerous symptoms at bottom

As far back as High School I can remember having back and hip pain and my arms and legs going numb easily. Shortly after 1994 I began having problems with my eyes when driving over approximately 15 miles, they would just close even if I wasn't tired I couldn't keep them open. I have made several attempts to clear up these problems. In 1996 I had an MRI to check out my eye problem they decided I must just have road hypnosis. In October 2001 I had a large Breast Reduction, this helped my back to a very small degree but not near as much as I had hoped. Through out the years I have seen Chiropractors with really no relief. In the summer of 2005 I went to see a foot doctor , who gave me inserts for my shoes , they didn't help either. I have also had problems with fatigue, just being utter wore out. Around the beginning of 2006 I started having pain in hands and arms. For the most part I just figured these pains to be a normal part of my life and would take Ibuprofen when they got to be to much.

In the middle of May 2006 I noticed a small amount of blood in my urine, I thought I had a urinary tract infection. I didn't Dr.'s found what turned out to be a large 9.5cm cancerous tumor enveloping my left kidney, which had slightly Hemorrhaged . I was sent to a urologist and ended up having my left kidney and the tumor removed. Although the surgical markings were clear, due to the size of the tumor and the fact that it had gone into the surrounding fatty tissue I was sent to an oncologist,and have had scans and blood work every 3-6 months since to keep an eye on things.

Since my surgery the problems I was having with pain in my back, hips, hands, numbness, fatigue and my eyes closing have become extremely worse,and many new symptoms have shown up. I have gone from occasionally taking Ibuprofen to now taking 10 mg Oxycodone CR two - three times/day and Hydrocodone / APAP 1 - 2 times a day for breakthrough pain- to make the pain bearable, in fact sometimes that doesn't always cut it. I don't expect the medicine to get rid of the pain it just makes it tolerable. I am attaching a list of the symptoms I am having at the end of this letter. I have been to multiple specialist who have taken more blood than I knew I had- had Brain MRI - CT's- X-Rays- Even:eek: Spinal Tap with no resolution. In fact I just returned from a week in Scottsdale AZ at the Mayo Clinic (what a waste) They said my knee caps are tilted sideways causing knee pain, Bursitisis in my hip they called the rest of my pain Myofasial? Which basicly means muscle and joint pain all over! - Duh! Not only have I been unable to work but doing simple things like lifting a gallon of milk, writing out a check or doing my hair are difficult and painful making day to day challenging.

Symptoms:
Pain in hands up arms into shoulder
- Pain is Constant - activities make it worse
- Hurts to write
- Hurts to hold books
- Hurts to hold just papers
- Hurts to do my hair and to brush daughters hair
- Buttons are hard to do
- Sometimes can't even turn door ***b
- Burning / Icy feeling at times
- Hurts when doing nothing
- Many other activities make pain worse - too many to list
Pain in Wrist
- Sometimes can't put any weight on it. It just gives out - like if trying to push self up
Arms / Hands, Feet / Legs going numb
Tingling sensation - like a lot of little bugs crawling on me
- Feet, Legs, Ankles, Arms, Scalp
Hip Pain
- Pain is worse on left side
- Painful to walk
- Can be hard to sit down and get up - mostly getting up
- Painful to spread legs apart
Back Pain
- Lower back spreads across hips/buttocks
- Travels up spine and can spread across ribs and/or shoulder blades
Pain / Tightness in Knees, Calfs, and Thighs
- Especially if standing for more than about 15 minutes
- Bending over, kneeling, and squating cause pain / tightness
Pain / Tightness in Jaw
- Squinting causes ( usually due to lighting)
- Singing or continuiosly talking for approx. 5 minutes cause pain
Trouble lifting
- Can hardly lft even a gallon of milk - very painful feels like 10,000 lbs
- Sometimes can bearly lift smaller objects like books
- Seems to be getting worse
Pain in feet and ankles
- Seems to be for no apperent reason its just there
- Made worse if on my feet for any extended peroid of time
Legs sometimes feel like jelly- Like they are going to give out when standing
Problems with Eyes
- Eyes don't stay open - I'm not tired my eyes just close
- Mainly when driving but also happens if not very active
- Sometimes vision is dull like looking through a thin fog - things just not sharp
Face - Tingling / Burning sensation
- Face actually turns bright red and is hot to the touch
- Sometimes it affects the whole face, usually only 1 side affected
Trouble Swallowing
- Frequently have touble swallowing but only Liquids - feels like it gets stuck
Fatique
- Very tired all of the time
- Low energy
- Sometimes exteremly wore out when just out of bed - sometimes by mid-day 1 or 2
- If I don't get a nap by early evening I can barely function
Tend to be cold all the time ( this is odd because I have always tended to be hot all the time)
- Hands and feet continually cold ( I have been heating socks and gloves in the dryer several times a day)
Some small annoying Memory issues
Slight hearing difficulty

Reply Flag this Discussion

7 Replies:

  • Did they check your vitamin D3 levels? Sounds like it could be a magnesium or calcium issue, or perhaps both a magnesium & calcium problem. (I know that magnesium is absorbed in a very specific part of the kidney that tends to be problematic)
    LINENUP 122 Replies Flag this Response
  • :) Thanks LINEUP,They did find a Vit D defiency and I have been taking Vit d and calcium since 3/04/08- my numbers are almost normal now but I've had no relief from it- I'm not sure if they have checked magnesium levels I'll ave to check into that one- I know they've drawn more blood than you can imagine usual 6 - 9 tubes at a time. So far everything they have checked other than the Vit D is normal. Appreciate your help I'll look into my blood work to see exactly what's been done:confused:Thanks againblw
    Anonymous 42789 Replies Flag this Response
  • Are you diabetic? Have you ever been to a neurologist? That's where I'd start. I assume the oncologist would have checked for bone metastasis. Eyes closing only after driving 15 miles? That's oddly specific. If it happens in other situations, maybe it would point to a nerve junction defect, like myasthenia gravis or eaton lambert. That would also explain why "a gallon of milk feels like 1000 pounds." Again, a neurologist is the guy to go to there. Many of the symptoms you describe sound like conversion disorder. You need to do something to get off of that pain medication. It will not help in the long run.note: myofascial doesn't mean joints and muscles. It refers to the connective tissue that keeps your body together.
    Anonymous 42789 Replies Flag this Response
  • Serum levels of magnesium are deceiving.. per the magnesium researchers. Deficiency can still occur with normal levels... you can look at Exatest or Trace Elements Inc. for alternative testing... Calcium supplementation with a magnesium deficiency can be problematic ... most americans do not get enoiugh magnesium ... avoid magnesium oxide ... a multi blend of magnesium may be better - see UltraMag. A check of copper levels could be advisable.. I would opt for Trace Elements Inc. test.
    LINENUP 122 Replies Flag this Response
  • I can't account for all the symptoms but you may have a few things going on....autoimmune diseases...have they been tested? Especially check the thryoid (which can account for fatigue, trouble swalling (swollen thryoid as it try to produce more thryoid hormone that it can't), vision, memory (I had this A LOT with thryoid), weight problems, hair loss and a number of other symptoms you mentioned) and fibromyalgia syndrome ....this last one can certainly account for your pain and it often goes hand in hand with thryoid problems...look up more on these two....Joan
    Joan5555 316 Replies Flag this Response
  • Many of the symptoms are the same as hypo thyroid ( I had them , and thought I was crazy until I did some research and figured out that the thyroid might be the problem). Had that checked?
    Anonymous 42789 Replies
    • October 16, 2009
    • 04:05 AM
    • 0
    Flag this Response
  • Here's my story a bit long so feel free to go to-List of numerous symptoms at bottomAs far back as High School I can remember having back and hip pain and my arms and legs going numb easily. Shortly after 1994 I began having problems with my eyes when driving over approximately 15 miles, they would just close even if I wasn't tired I couldn't keep them open. I have made several attempts to clear up these problems. In 1996 I had an MRI to check out my eye problem they decided I must just have road hypnosis. In October 2001 I had a large Breast Reduction, this helped my back to a very small degree but not near as much as I had hoped. Through out the years I have seen Chiropractors with really no relief. In the summer of 2005 I went to see a foot doctor , who gave me inserts for my shoes , they didn't help either. I have also had problems with fatigue, just being utter wore out. Around the beginning of 2006 I started having pain in hands and arms. For the most part I just figured these pains to be a normal part of my life and would take Ibuprofen when they got to be to much.In the middle of May 2006 I noticed a small amount of blood in my urine, I thought I had a urinary tract infection. I didn't Dr.'s found what turned out to be a large 9.5cm cancerous tumor enveloping my left kidney, which had slightly Hemorrhaged . I was sent to a urologist and ended up having my left kidney and the tumor removed. Although the surgical markings were clear, due to the size of the tumor and the fact that it had gone into the surrounding fatty tissue I was sent to an oncologist,and have had scans and blood work every 3-6 months since to keep an eye on things.Since my surgery the problems I was having with pain in my back, hips, hands, numbness, fatigue and my eyes closing have become extremely worse,and many new symptoms have shown up. I have gone from occasionally taking Ibuprofen to now taking 10 mg Oxycodone CR two - three times/day and Hydrocodone / APAP 1 - 2 times a day for breakthrough pain- to make the pain bearable, in fact sometimes that doesn't always cut it. I don't expect the medicine to get rid of the pain it just makes it tolerable. I am attaching a list of the symptoms I am having at the end of this letter. I have been to multiple specialist who have taken more blood than I knew I had- had Brain MRI - CT's- X-Rays- Even:eek: Spinal Tap with no resolution. In fact I just returned from a week in Scottsdale AZ at the Mayo Clinic (what a waste) They said my knee caps are tilted sideways causing knee pain, Bursitisis in my hip they called the rest of my pain Myofasial? Which basicly means muscle and joint pain all over! - Duh! Not only have I been unable to work but doing simple things like lifting a gallon of milk, writing out a check or doing my hair are difficult and painful making day to day challenging. Symptoms:Pain in hands up arms into shoulder - Pain is Constant - activities make it worse - Hurts to write - Hurts to hold books - Hurts to hold just papers - Hurts to do my hair and to brush daughters hair - Buttons are hard to do - Sometimes can't even turn door ***b - Burning / Icy feeling at times - Hurts when doing nothing - Many other activities make pain worse - too many to listPain in Wrist - Sometimes can't put any weight on it. It just gives out - like if trying to push self upArms / Hands, Feet / Legs going numbTingling sensation - like a lot of little bugs crawling on me - Feet, Legs, Ankles, Arms, ScalpHip Pain - Pain is worse on left side - Painful to walk - Can be hard to sit down and get up - mostly getting up - Painful to spread legs apartBack Pain - Lower back spreads across hips/buttocks - Travels up spine and can spread across ribs and/or shoulder bladesPain / Tightness in Knees, Calfs, and Thighs - Especially if standing for more than about 15 minutes - Bending over, kneeling, and squating cause pain / tightnessPain / Tightness in Jaw - Squinting causes ( usually due to lighting) - Singing or continuiosly talking for approx. 5 minutes cause painTrouble lifting - Can hardly lft even a gallon of milk - very painful feels like 10,000 lbs - Sometimes can bearly lift smaller objects like books - Seems to be getting worsePain in feet and ankles - Seems to be for no apperent reason its just there - Made worse if on my feet for any extended peroid of timeLegs sometimes feel like jelly- Like they are going to give out when standing Problems with Eyes - Eyes don't stay open - I'm not tired my eyes just close - Mainly when driving but also happens if not very active - Sometimes vision is dull like looking through a thin fog - things just not sharpFace - Tingling / Burning sensation - Face actually turns bright red and is hot to the touch - Sometimes it affects the whole face, usually only 1 side affectedTrouble Swallowing - Frequently have touble swallowing but only Liquids - feels like it gets stuckFatique - Very tired all of the time - Low energy - Sometimes exteremly wore out when just out of bed - sometimes by mid-day 1 or 2 - If I don't get a nap by early evening I can barely functionTend to be cold all the time ( this is odd because I have always tended to be hot all the time) - Hands and feet continually cold ( I have been heating socks and gloves in the dryer several times a day)Some small annoying Memory issues Slight hearing difficultyHi ,I just wanted to let you know that I have been to so many doctors and specialist I have lost count.I have all the same symptoms as you plus extra or maybe you didn't list them all.My memory was fading to the point I couldn't remember my own phone number and I was getting confused at times and not being able to finish a task.I was losing my motor skills and had chronic diahrrea every day.I practically became a shut in due to pain and anxiety.I have had a tumor removed from my chest and another is growing.I have cyst on my liver(not cancerous yet)After 13 years I found the problem on my own by mistake.I have been consuming inorganic arsenic from my contaminated well for 13 years..The doctors never once tested me for it until I found out through a water sample on my own.It has been 8 months since I have drank the water and most of my symptoms are nearly gone or at least bearable.The problem was is that all my symptoms ,either by themselves or as a whole ,were being mistaken and I guess could be caused by other conditions.But ALL these symptoms including the cancer are ALL cause by Chronic Arsenic Poisoning.If you haven't been tested for that I strongly suggest you look into it right away.Good Luck to you.
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.