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978488 tn?1295468883

please please please please help.

Hello. in the last six months I have been in and out of the hospital .
I have been diagnosed with Endomitriosis and Sciatica.  I have had two surgerys in the last six months for my Endomitriosis they burned it off the first time and it grew back and burned it off again . The endo and sciatica have been painful and still are a bother but I have other things going on after the first surgey they started........

First  mt hands started to go numb both of them! It could not be carpel tunnel because the pinky goes numb too. they go numb all day and most when i sleep. I woke up the other night and just mt left pinky and my left foot and leg as numb.  my feet alo go numb from time to time . this time it was the left part of the body. my knees and behind my knees feel like somone has taken a baceball bat to them a cant clime the stair anymore!!    my SKIN feels like it is hypersensitive to touch and it hurts like hell.  somtimes i will just sit there and cry it feels so bad! . );   I have mucel spasams and now i have pain in different areas of my skin like it is brused in that area and the next day it will be in another spot.    now my arms hurt to extend just like it feels behind my knees but also now behind my elbows . somtime all four fingers go numb and others its just my two pinky fingers on both hands . it is like it is damaging different nerves . I feel it is neurological but also effecting my joints and skin and muscels!! I am in so much pain everyday i cant take it anymore. My huband is maybe going to send me to the henry ford clinic in the states to get all kinds of tests done to see what this is . a neuologist just tkes to long and i am falling apart!! I alos have back pain but dont think my back could cause all of these symptoms.      PLEASE HELP  what could this be????? I have thought of ms . also i went to a chiropracter and she said my reflexes are diminished.    Please if you know anythong let me know i would really like that..... Robynn
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875426 tn?1325528416
A quick look online basically revealed that a mother can not pass it on to her child but can pass on the prediposition to develop it, given a trigger, such as exposure to the sun, pregnancy & having a baby, or an infection.  

Regarding the spasming- tardive dyskinesia came to mind besides seizure symptom.  I think you should seek both simultaneously- neurologist and rheumatologist referrals & get your appointments as soon as you can.  If they say nothing is available until six weeks from now, ask to be put on a cancellation waiting list and check back at frequently to see if your name has moved up the list- the squeaky wheel often gets the grease.

Plus, please don't overlook the other reasons for high lymphocytes I listed that you haven't been tested for and consider them as well.
Helpful - 0
978488 tn?1295468883
Hello again. Well thank u for the info on blood cell counts.  Because that is of the only things off from my tests it's got me looking into it more. I am getting a double standard DNA test done on Monday to test for lupus.  My mother has lupus acually so what are the chances I wonder of that being passed on to me. ? I have had my Ana and ESR tested with nothing showing many times now. But my doctor said somtimes it won't show up for up to even ten years.!? But what Are the chances of that ? Do u think at least somthing would show up inflammation even? I did have my. ACE level increased by a lot and then was tested for sarcoidosis and turned up nothing but heard that increased ACE is a inflammation marker and has been also seen in lupus and even m.s. That's what I got from my reasearch anyway. My new symptom is severe jerking and twitching all over my body in the muscles every couple seconds And is becoming very annoying for me.  My
joints are becoming more and more painful mosley in hands and knees. I guess I'm just stuck between is this a neurological or rehumatisim thing ? Who should I seek first?? Thank u :)
Helpful - 0
978488 tn?1295468883
Hello again. Well thank u for the info on blood cell counts.  Because that is of the only things off from my tests it's got me looking into it more. I am getting a double standard DNA test done on Monday to test for lupus.  My mother has lupus acually so what are the chances I wonder of that being passed on to me. ? I have had my Ana and ESR tested with nothing showing many times now. But my doctor said somtimes it won't show up for up to even ten years.!? But what Are the chances of that ? Do u think at least somthing would show up inflammation even? I did have my. ACE level increased by a lot and then was tested for sarcoidosis and turned up nothing but heard that increased ACE is a inflammation marker and has been also seen in lupus and even m.s. That's what I got from my reasearch anyway. My new symptom is severe jerking and twitching all over my body in the muscles every couple seconds And is becoming very annoying for me.  My
joints are becoming more and more painful mosley in hands and knees. I guess I'm just stuck between is this a neurological or rehumatisim thing ? Who should I seek first?? Thank u :)
Helpful - 0
875426 tn?1325528416
As I am a layperson, you need to check what I'm saying with a doctor who understands labs, but Re: Lymphocytes- you say they were at 7, so I'm assuming you are not doing lymphocytes percentage in the blood, which run at higher numbers. According to a lab that checked my blood a long time ago, a normal range Th/cmm is 1.2-3.4 .    That would put yours at more than twice the high end of normal.  I have an old manual of lab tests put out by J.B. Lippincott Company, which suggests the following conditions that could cause a high number of circulating lymphocytes.  Here' the list:
a) most viral upper respiratory infections
b) other viral diseases such as mumps, pertussis, infectious mononucleosis, infectious hepatitis, viral pneumonia and measles
c) bacterial infections such as TB, brucellosis, syphilis, and healing infections
d) hormonal disorders such as hypothyroidisma and hypoadrenalism
e) lymphocytic leukemia, lymphocytic lymphosarcoma, leukosarcoma
f) diarrhea

Now with that old lab book, it says you have lymphocytosis as an adult if your number is over 4,000 cu. mm.  So even if that were the number or if your lab says it's as high as five for normal, your number would fall into that category of being high that the book lists possible causes about.

Regarding Lou Gehrig's disease (ALS), named after a famous baseball player who used to play for the Yankees who developed this very serious affliction: national institute of health (a gov website) suggests symptoms usually do not develop until after age 50.  See private message for more details on ALS, including symptoms and tests.
Helpful - 0
978488 tn?1295468883
Lymphocytes were high but like I said not off by much they were at 7. And I think the normal is below five or somthing. What do you think about the urine retention mixed with body spasticity and jerks? You talked of Lou gareks disease ALS. How would I get a test for that? And have you heard of m.s showing up later on ? I heard that usally it will not show up till your 40s most the time. But also I have had a spinal tap done and my CSF looked normal can m.s still show up?
Helpful - 0
978488 tn?1295468883
Lymphocytes were high but like I said not off by much they were at 7. And I think the normal is below five or somthing. What do you think about the urine retention mixed with body spasticity and jerks? You talked of Lou gareks disease ALS. How would I get a test for that? And have you heard of m.s showing up later on ? I heard that usally it will not show up till your 40s most the time. But also I have had a spinal tap done and my CSF looked normal can m.s still show up?
Helpful - 0
875426 tn?1325528416
They should break down your WBC- what part of it is high?  There a five subtypes of white blood cells- neutrophils, eosinophils, basophils, lymphocytes, and monocytes. (See PM.)  I've read that MS doesn't always show up immediately on the MRI... I would pursue getting referred to a specialist knowledgeable about MS.
Helpful - 0
978488 tn?1295468883
Hello.  It's been a long
time and I am getting worse.  My new symptoms are urinary retention and it's very bad to the point where I have to push so hard just to go pee. Also.  At the same time this happened I also started getting severe muscle twitches and my whole
body will shake
in my sleep. Where my arms go
numb it is very tight there very hard.  Also in my legs too and they also go numb. I have
had my face also go numb. Yes I have had a MRI on spine and brain with nothing showing up. All
of my blood test are normal. The only thing increased was my ace level. I have looked it up and
it has been seen in ms. But they Said nothing   about it to  me. Also my wight blood cells were a little high but not much at all. At this point it is hard to get around my Kendra feel broken and I have had a x Ray on them with nothing shoeing up. also my hands hurt to make a fist and are swollen. My ankels and all the joints in my fingers hurt my skin feels so sensitive just with a breeze it hurts me. I am in so much pain I don't know what to do anymore.  Any new things u can think of.  ? That would help me so
much. Thank u :)
Helpful - 0
978488 tn?1295468883
Hello.  It's been a long
time and I am getting worse.  My new symptoms are urinary retention and it's very bad to the point where I have to push so hard just to go pee. Also.  At the same time this happened I also started getting severe muscle twitches and my whole
body will shake
in my sleep. Where my arms go
numb it is very tight there very hard.  Also in my legs too and they also go numb. I have
had my face also go numb. Yes I have had a MRI on spine and brain with nothing showing up. All
of my blood test are normal. The only thing increased was my ace level. I have looked it up and
it has been seen in ms. But they Said nothing   about it to  me. Also my wight blood cells were a little high but not much at all. At this point it is hard to get around my Kendra feel broken and I have had a x Ray on them with nothing shoeing up. also my hands hurt to make a fist and are swollen. My ankels and all the joints in my fingers hurt my skin feels so sensitive just with a breeze it hurts me. I am in so much pain I don't know what to do anymore.  Any new things u can think of.  ? That would help me so
much. Thank u :)
Helpful - 0
875426 tn?1325528416
PVD- they could start out with checking your pulses in your feet.  I believe they used a doppler machine on my grandma.  With her peripheral vascular disease, her cholesterol was very high- some people's bodies make much more than others.  Her blood vessels clogged up and ischemic pain followed and numbness and the beginnings of gangrene followed.  But she had pain when walking quite some time back from when that happened, a warning sign, if we had known why.

Your doctor may be right with MS....Have you heard of the bee sting treatment some people us for MS that somehow acts on them to give some feeling back?  But with your supersensitive skin, that seems like something you mightn't want to even contemplate!

Did they already definitely rule out Lou Gehrig's disease with that EMG then?
Helpful - 0
978488 tn?1295468883
I wanted to be checked for that vascular disease but yes they say I'm too young and did not even I am going to go in again and ask him but what kind of test do I ask for ? How do they check for that disease.  As far as m. S he said it can be there but not show up till later in the disease.   I get the feeling that is what he thinks it is.   Also he said lupus can also not show up infill later and we need to keep testing for that and wait for somthing to present itself and just treat the pain for now.   Thr thing is. I'm getting even worse ! The numbness is now gone up in my arms and has gone into the left side of my face ! I'm freaking out and the pain in my skin is very painfully real.  I have become weak and feel bruised everywhere ! The numbness is there more when I lay down also twitches and severe knee pain    Have had MRI on knees and nothing.   Also had spine MRI full spine and MRI brain emg of arms legs and mild neuropathy in leg but nothing important she said.   So they gave me a skin biopsy and still waiting for the results     I have traveled all the way to Detroit Henry ford hospital and spend lots of money also had a spinal tap with nothing . My ace leveled were elevated as well as wcb was increased could be sign of infection but the numbers were only like 2 over not very much at all they said. But it is still somthing. I am still waiting for the skin biopsy results and will show smallnerve fiber damage.   So yes I have gotten almost all the tests done but I still feel like they did not look at things that need to be diagnosed through symptoms.  I'm getting worse and that's real    What ever is happening to my body is not just fibromyalgia that's what they tell people when they don't know what it I's my doctor even said that and thinks the Detroit hospital did not help me at all.   Yes my doc is keeping a eye on my kidney and liver.   He is s very nice doctor and said sorry we just don't know what it is but thinks in time it will present itself and we will keep testing for lupus and m.s  yes also I did get my    R. A tested   Negitive.   So with all this new info what do you think ? Weird hey?  I feel very scared at this point because I'm getting worse and they don't know what this is    Thank you for all your help    I am doing all the tests that you named as soon as I ask ny doctor for them now.    
Helpful - 0
875426 tn?1325528416
If they say you are too young for circulation problems, they must not be aware that peripheral vascular disease has been known to be found even in teenagers!  Regarding MS, an MRI of the brain and spine should show if there are any lesions that would indicate MS, I believe.  I had a relative get tested with just an MRI scan of the brain a short while back as she has problems with numbness.

With such a high dose of medication, is your doctor keeping a close watch on your kidney function numbers and liver function?  I don't remember if I asked you if they tested your RA factor or for lupus?

Doctornee mentioned nerve compression- have they done an MRI of your spine?  I wonder if your spinal cord is getting compressed, because feeling has a lot to do with your spine?  

I hope your doctor is doing all kinds of testing to try to have something "present itself"!
Helpful - 0
978488 tn?1295468883
In the last couple of days I have been getting even worse! ): The numbness now is going up to my shoulder along with the whole arms . it seems to be slowley moving throughout the body .  first it wa the four arms then it  went into the first part of the legs and now it has reached the whole leg and now the whole arm and the shoulders! i also feel very weak and my knees are very hard to ben because they hurt sooo much . I am on neurontin for the nerve pain but my nerves may not be the problem because i am on the highest dose one can take and has not done one thing. just am getting worse each day . the doctor said we just have to keep me out of pain with my pain pills and wait for somthing to persent itself.  thats not good to hear i would like to know what this is before anything happens not the other way around.  (:  what do you feel it could be ??
Helpful - 0
978488 tn?1295468883
Thank you for your fast reply (: you are helping me more then you know .
potassium levels are fine . all vitimin levels are good . iron good. ferritin good. have not had a 24 hour urine test yet but will ask for one now thanks to you .  they have not checked any om my pulses in my ankle or anywhere . i think because they say i am too young for circulation problems . yet it really feels like circulation . I dont know yet if i have had my cholesterol level checked yet . I have all my reports from when i went over to the henrey ford hospital in detroit so i will go through them and get back to you on that one .  orthostatic blood pressure has not been done but am going to go and get a home cuff like you said and test that every day and will let you know my numbers.. I went to my family doctor the other day and he said sometimes things like m.s and lupus will not show up for years on the tests and i think he feels it still could be m.s because of the way i go numb.  what are your feelings on that ???
Helpful - 0
875426 tn?1325528416
Have they checked your potassium level, to see if it is low, which can cause muscle cramps in extremities, weakness, tiredness, numbness or tingling, and more? Have they checked you for Lou Gehrig's disease?    You might see if they will do an EMG- nerve conduction study to see if your nerves are okay.

You might look into if they can test blood volume, not just by CBC and checking your iron and ferritin (iron is important toward oxygenation of blood), but I had a test I read about that might tell you something about volume- getting a twenty four hour urine test for sodium level.

  You might see if after you've layed a short while, they will check to see if they can feel your pedal pulses, the pulse in your ankle area, and your radial pulses equally in strength.  I had a knee injury and knee surgery.  I went to an acupuncturist and I commented that one part of my leg felt like it was asleep when she would push on it and put a needle in.  She suggested circulation problem.  After many acupuncture sessions, feeling seemed to return.  But it's been awhile since I've had acupuncture, and the problem of the asleep feeling has returned to that leg.

You might have your cholesterol level tested, because plaque build up can impede blood flow and even cause blockages of blood vessels and the part of the vessel below the blockage can die and cause horrible ischemic pain (happened to my grandma- she had peripheral vascular disease).  It hurt her to walk, she had terrible ischemic pain, then one of the legs went numb.

Because your chest is paining you, they definitely should take a look at that- perhaps an echocardiogram and if the pain comes with exercise, you might ask for a nuclear medicine test where you exercise, they inject something and take pictures of your heart when it's pumping hard.  They can check for areas of ischemia in the heart, where it looks like a lack of oxygen is taking place.

Also, since your numbness seems to be happening when you lay down, you might take orthostatic blood pressures and pulses with a home omron cuff, laying down for ten minutes, then stand with arm resting on table/counter and wait two to three minutes and take it again.  I'd be curious to know what your numbers are, if you'd care to share.

I can't help but think you are having some sort of hypersensitivity of nerves, that it hurts to be touched.  Maybe your substance P level is way too high.  I have a relative with fibromyalgia who has problems with her legs going numb when they are in an elevated position.  Also, when the cat sits on her lap while she's sitting, her legs go numb and she has to get the cat off.  A rheumatologist can check you to see if you have a certain amount of painful pressure points that would help them to diagnose you with fibromyalgia.  Fibro pain CAN be very bad, even dehabilating.  I've heard of someone who had trouble just getting up and getting dressed in the morning with fibromyalgia.  
Helpful - 0
978488 tn?1295468883
yes i have had my spine done mri. and also a mri of my brain to check for m.s  nothing showed up .   i am going down hill with all this joint pain and stiffness as well and it is hard to get out of bed or stand up the pain is so bad . feel like i am 100 years old and cant move around. my RF. came up negitive and i dont have lupus or anything like that . they say it could be fibromyalgia but i have never heard of it ever being this bad to the point of i cant get up the stairs and feel like i need a wheel chair to get around . And the numbness is not like fibromyalgia not like this . as soon as i rest and also in the day . arms legs completley numb . please help. what if it is circulation where do i go from there?? also could it be my heart?? i have not had that checked yet and also have gotten chest pains that come and go on left side of chesst .
Helpful - 0
978488 tn?1295468883
hello Thank you for your reply.     I was very intrested when you asked if they checked out circulatory problems.  i go numb as soon as i lay down and it feels like my circulation is being cut off in my arms and legs . i am also very cold when i wake u as well as numb everywhere.  I have asked the doctors if it could be my circulation and they say no without giving me a reason why .  can you please tell me what i should get checked to do with that mater???
Helpful - 0
875426 tn?1325528416
Have they checked out circulatory issues?  Have they checked the brain and spine for any blood clots/damage?

Excision, if you get past this serious numbness, etc. problem that you are experiencing, rather than burning endometriosis, if they ever operate on that again, is the better way to go, because burning leads to more scarring and potential adhesion formation, because the body views the burned tissue as a foreign entity.   I was burned when I didn't know it (emergency laporotomy).  I read up about it and asked the doc who did my hysterectomy to excise as much as possible and had a much less painful outcome with that laporotomy.
Helpful - 0
978488 tn?1295468883
Thank you for yor reply doc.    I am getting worse now my legs are both numb and both of my hands and arms . and my arms and legs hurt to extend also my knees feel like they were run over . my inlaws are sending me to the states to the henry ford hospital to be  checked and diagnosed.  the doctor said it could maybe be ms and that he has never heard of both lega and arms going numb just in m.s I have had my b12 and all the other things you have listed done .  I am in need of a neurologis now i think . realy just want to know what is going on . any other ideas ??? I cant get in till about three more weeks and even that feels like such a long time and i am scard.  thank you so much .
Helpful - 0
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi
Welcome to the forum!
Since you also have sciatica, there is a chance that you have compression of cervical spinal nerve. This can happen due to overuse of computers, work involving straining of neck, canal stenosis, bone disease, spondylosis, poor posture etc. This can cause tingling and numbness. Prolonged pressure, decrease in reflexes is not a good sign. Please consult a neurologist.
Also there is a chance you have chronic fatigue syndrome. Deficiency of Vit D and Vit B12 should also be looked into. Diabetes and hypothyroidism too can cause peripheral neuropathies.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!
Helpful - 0
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