hi, i'm anna.

i have some strange symptoms which may be related or unrelated, but as yet i have not been diagnosed with anything. except for depression, which i believe is unrelated. i was hoping someone may have experienced something like it, or may be able to suggest what tests i could have done/ what i might have.

my symptoms/ history:
* tiredness/ fatigue a lot of the time, been there for years (tested for anaemia a few times, had it when i was 8 or so but never since)
* 2 years ago i woke up with an almost completely numb lower right leg (went away after a day, but next day experienced severe weakness in ankles and some pinched nerve pain in right side of back. pinched nerve pain continued intermittently for two weeks to a month. after that, just weakness and shaking in legs when trying to do physical activity)
* weakness and shaking in my legs (particularly my right one) still bothers me, particularly weakness when i'm walking up stairs and shaking when i'm walking down stairs (especially once i've walked up and down a few)
* my toes are often purple, even when i'm not feeling cold
* or my toes are bright pink (particularly when i walk etc)
* sometimes after doing the dishes and having my hands in hot water my fingers stay pink for a long time and feel hot
* sometimes i feel 'out of it', most often with fatigue
* my uncle has vitamin B12 deficiency and nerve issues (i have been tested for the B12 deficiency but don't have it, and his nerve problems involve pain which atm mine don't)

tests done:
* blood tests for anemia
* blood test for vitamin B12 deficiency
* blood tests for diabetes
* blood tests for some autoimmune diseases
* MRI scan for multiple sclerosis
* basic neurological tests with hammers and torches

all of the above tests have been negative/ normal (with the exception of anemia when i was 8)

i have just had more blood tests for anemia, autoimmune diseases and thyroid problems. will get the results tomorrow, but am not getting my hopes up too much

can anyone offer suggestions/ comments?

p.s - thanks for reading!

I have Myasthenia Gravis, so I can relate to the weakness/fatigue.........I had problems for YEARS before being properly diagnosed - have they tested you for that? Are you have ing any problems seeing, swallowing, etc? I first noticed a huge amount of fatigue (for years and was also diagnosed w/depression, but the pills did NOTHING for me), then my speech was affected (I sounded nasal and drunk), then 6 months later (after a mystery infection that made me really weak) I started having problems seeing, followed quickly by all the other terrible hallmarks of MG..........I don't know, bt it may be worth it to be tested for that as well (do you feel much better after periods of rest? That is one of the hallmarks of MG)...........Let us all know how you are doing and your test results.............
Erin

thanks, no i haven't been tested for that. i don't have any problems seeing or swallowing though. i do feel better after resting though.

my test results were normal surprise surprise. and the doctor gave me the maybe 'its all in your head' speech. but she did refer me to another doctor

Hi,
i chatted with you some in the chat room a while back and was hoping for you would be getting some answers. I know how stressful and irritating it can be to not be diagnosis---i had some similar problems.
Hang in there and keep after those physicians!
Keep us posted. Hope to see you in the chat room!

Sally

It is frustrating when you cannot get a diagnosis. I have been labeled a psych case on many occasions when the docs could not figure me out. My saving grace was in going to a rheumatologist. He diagnosed me with fibromyalgia and complex regional pain syndrome II. Neither of these would show up in a blood test and are pretty much diagnoses of elimination (when your pain is real but there is no test that shows why). Some of your symptoms sound like CRPS II. Hope this helps.

Definition from NIH


The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury (if an injury has occurred), which gets worse rather than better over time. CRPS most often affects one of the extremities (arms, legs, hands, or feet) and is also often accompanied by:

* "burning" pain
* increased skin sensitivity
* changes in skin temperature: warmer or cooler compared to the opposite extremity
* changes in skin color: often blotchy, purple, pale, or red
* changes in skin texture: shiny and thin, and sometimes excessively sweaty
* changes in nail and hair growth patterns
* swelling and stiffness in affected joints
* motor disability, with decreased ability to move the affected body part

Often the pain spreads to include the entire arm or leg, even though the initiating injury might have been only to a finger or toe. Pain can sometimes even travel to the opposite extremity. It may be heightened by emotional stress.

The symptoms of CRPS vary in severity and length. Some experts believe there are three stages associated with CRPS, marked by progressive changes in the skin, muscles, joints, ligaments, and bones of the affected area, although this progression has not yet been validated by clinical research studies.

Stage one is thought to last from 1 to 3 months and is characterized by severe, burning pain, along with muscle spasm, joint stiffness, rapid hair growth, and alterations in the blood vessels that cause the skin to change color and temperature.

Stage two lasts from 3 to 6 months and is characterized by intensifying pain, swelling, decreased hair growth, cracked, brittle, grooved, or spotty nails, softened bones, stiff joints, and weak muscle tone.

In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility, and involuntary contractions of the muscles and tendons that flex the joints. Limbs may become contorted.

Strangely enough a doctor I went to said I had fibromyalgia, too. But then again, when I had tetanus, which also takes away all of ones strength, the doctors at the ER said I should read about fibromyalgia... you can't see tetanus and there's no test for it, so you don't look particularly sick if the seizures aren't hitting, and once they've hit there's a strong desire to never have to feel that intense pain again.

Okay, so while my B12 test levels were "normal" by American lab standards at that time, after I had a LOT of B12 while I had tetanus I had a huge change in my unrelated health: pain I'd had in my thighs from peripheral neuropathy went away, my memory improved, my hand stopped shaking and it made sooooo much difference to my handwriting. Tingling went away, oh, and tinnitus that I'd had began to be gone for long periods of time.

So, what I think is that the B12 test is tricky because the low normal in the US is so low that it allows people to have serious symptoms... and without it being B12, according to the tests, various drugs are prescribed, as for instance those for "restless leg syndrome" -- I had the symptoms of restless leg syndrome, but when I had a lot of B12 they went away.

If you want to see if low B12 is the problem, get the methylcobalamin and take it for a couple of months. If you use one lozenge a day for a month that's equal to a B12 shot. If the problems you are experiencing are related to low b12, then in two or three months the problems should lessen.

You could try the 5mg lozenges, which would add up to about 5 B12 shots a month... I think that would be a better choice because then in a month or 6 weeks you could have enough improvement to know the problems were related to low B12.

B12 is not dangerous, so making your our study of yourself is a good idea without being a worry.

hi i have had total body numness in legs torso arms hands now tingling in hands. walk drunk but not. off to the left walk. muscle sparms ocassionaly in leg heavy legs squeesing feeling tightness in torse are numb breasts. also had bolld work mri nueological conducitvity test. all test are normal and of course they gave me pills for depressionm and anxiety. which dont help . my dr gave up i have apptment at ucsf on nov 28th im so tired of being this way

Do not give up and do not let the Dr's tell you it's in your head. My 27 yr old daughte was diagnosied with pareo neoplastic syndrome almost a year ago. It took almost a year and lots of Nero Dr's telling us it was in her head, to finally find a Nero Dr, that did the right test to find it.(spinal tap) Like you she started out with these same symtoms. I don't know where you live, but it's worth it to find a great Hospital like Mayo or Emory to get to the bottom of what is going on.