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Please give me hope!
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Please give me hope!

Hello every one!

Would any one please help me figure this out?

I will begin saying that I have lived more or less in a very worried state. I have three children diagnosed with a rare lung disease and it took us and the doctors three years to figure out what was going on. My oldest child was misdiagnosed for two years and it was not until his little brother was born and started having the same symptoms and had a lung biopsy that we after another misdiagnosis found out what was going on. Their little sister has a milder form of it. All this made me feel very sad and worried. I also have a hard time trusting any health care proffessionals.

My symptoms started in the spring of 2011 after my youngest child had been born. I felt at times very depressed and had to force my self out of bed, would cry a lot. It started with sudden tingling in all distal extremities together with stabbing toe and finger pain. The pain would migrate even withing the same day (some times within an hour going from one fot to the next and to the hands). The tingling went on day and night. When it was at it`s worst I got ancle pain. It slowly got better. Altogether it lasted for 2-3 months. After the worst was gone I had recidual toe pain that would come and go. One time I wore uncomfortable shoes and my toes went "numb" for several days. They were not really numb as I could feel things, they just felt numb.

I had the toe pain occasinally until again all of a sudden in february 2012 I got the tingling in all extremities that alsted for a couple of weeks and after that I would again get the stabbing pain this time also moving around from toes to fingers. I also got burning skin pain that would move from one place to another. The burning feeling in my skin has been on my legs, arms, hands, scalp, neck and shoulders. My right side hand and foot felt numb even though I could feel even the slightest touch etc in a normal way. This lasted for 2-3 weeks and went away. At this moment the numbness comes some times stays for some hours or a day and goes away. Sometimes when my outermost fingers in my right hand feels numb it hurts at the same time. I also have a spot on my left cheek that comes and goes and feels numb (although I can feel warm/cold/slightest touch in a normal way). I also have a buzzing feeling in my legs and some times in my pelvis and torso. The buzzing feeling stays for days and after that might go away. I have had some kind of chest pain with a small spot feeling achey (achy), this spot is usually on the right side and some times moves to the left. I also had the burning skin feeling across my chest and other forms of chest pain. (My heart is completely healthy.) My joints sometimes feel swollen and stiff even if they are not. After sitting on the floor I often feel really stiff. I had an episode of pain in my back. Some days the pains are really bad and my toes and fingers (under the finger nails) hurt and pain killers do not help. Some times it feels like my bones in my legs hurt. Some days I feel almost normal. Some days I feel like my arms and legs are full of lactic acid. The symptoms do not interfere with sleep. I have since a very young age had an issues that whenever upset my bowels also get upset.

I have seen five different neurologist that all made neurological tests that came back normal. The neurologist told me that my exam is normal and my symptoms do not really fit ms. I am terrified of ms and feel that I am panicking about it every day. We have three children with pulmonary issues and I am panicking that I won`t be able to care for them! I have had an ENMG which came back normal. I have recently had a brain mri and a complete spinal mri (the spinal mri was without and with contrast) and all were completely normal. I do have diabetes and my blood sugar has not always been so good due to the stress levels in my life. I was told that this is NOT periferal neuropathy as the ENMG (periferal nerve conduction studies) was completely normal.

I had a blood test for borreliosis which I was told was normal.
My calcium level was a bit low. Other basic blood tests were normal.

I was told that this could have been induced by the extreme stress I have been feeling. I am currently going to see a psychiatrist. I have also been told I need to get physical theraphy as the muscles in my neck/shoulders are very tense (mainly also due to stress).

Are symptoms like this really something that can be stress induced?

Our family has alreade been through a lot and this is making me feel so scared. I am terrifies that I have ms. I even saw a doctor from a ms center. This was before having the mris and he told me that in his opinion he did not feel it was a central problem, he did encourage me to get the brain mri to be on the safe side.

The children`s condition require me to be able to be able to focuse on their issues and I feel so scared og getting sick myself. I am also concerned that I had the first episode which resulted in the toe pains lingering and the second episode just 6 months after the first and the symptoms are still going on.

My balance is completely normal and I can stand, walk heel to toe, on my toes with eyes closed etc. Stand on one leg with eyes close and stand with eyes closed and "being pushed a little" and remain in a stable standing position. My husbnad told me I do these things much more stable than he does. I feel the touch and the vibration when being tested at the neurologist. All reflexes are completely normal. These things have been tested at several neurologists.

I can live with these symptoms, it is the fear of what might be causing it that is ruining my life.

Is there any thing encouraging some one could say? Please give me hope!
2 Comments Post a Comment
Avatar_f_tn so sorry i cant give you any answers.but all you have said regarding doctors and advice  you have sought..i dont think i could even help any more than that...i too get stabbin pains in my toes and my head..i say to my boyfriend..that cant be good...all what you say i experience similar is most definitely stress..dont let it overcome you..keep strong.i know its hard. my daughter has a rare syndrome and a rare muscle disease..i truely know how you feel.she is almost 18..everything you said i have gone through and still do...maybe its as a mum it just hurts so much...but your not alone..keep fighting and keep strong....

  Hi, I would suggest getting copies of all testing, the MRI's the reports, even labs u had done...and take to another Dr for a 2nd opinion....things can be missed...and some Drs consider some findings incidental feeling they have no baring on how u feel, and it may....Drs can not know about all conditions and things can get overlooked so get another opinion.

Good Luck
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