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Avatar universal

please, can someone help or or share....thanks

I am a sixty year old woman who was  diagnosed with moderate to severe sensory-motor (plus axonal) neuropathy, positive Romberg, and abnormal visual evoked test in 1999 which at that times was thought to be due to B-12 definciency.   After initial series of shots (which I am still one)  it seemed that I was improving but things have slowly gotten worse over time.   have you been diagnosed with and or treated for B-12 definciency?

I am now experiencing the feeling I am stepping in water (no water there) in my feet; severe itching (at times) on feet and legs and also hands and forearms; electrical shock sensation in feet/legs and hands,arms and sensation of tingling/crawling sensation from head and other parts of body, etc. The first two are such bizarre symptoms and wonder if anyone else has them?

I have not sweated for at least several years.  When I went out this summer to mow the yard (temperature less then 70 degrees), in less then forty five minutes my body temperature rose three degrees and  feet, hands, and face  brick red .  Yet at times, I get so cold (no matter what temperature is), chills, brain get thick and foggy to where I have to lay down and sleep.  I  also get severe constipation or diarrhea and having problems with holding urine.

I also have trouble walking and fell again yesterday ....embarassed but not hurt!!!  This is becoming more frequent and wonder does anyone else have problems making their feet work or maybe it's the legs.  Anyway, I also have a tendency at times of falling straight back and having no memory (though only brief moment, I think).  Have suffered two head injuries from falling backwards.

I have been diagnosed with fibromyalgia but I do think that many people are just lumped in there because doctors cann't, won't or just don't know what is really wrong.  How many people feel they might have at least a duel diagnosis.

I am weary, I am tired, and now having trouble sleeping.   There are days that I just cannot fall asleep no matter how tired I am.  So wonder if this is a part of the neuropathy or can it also be a part of fibromyalgia?  I have been fighting bizarre symptoms (sometimes worse then others);  but am finding that the attacks (or whatever we can call it) is happening more frequently, with less time in between them, and lasting longer and longer.  Until it seems to be just one continuous problem.

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Avatar universal
First of all, I served in the Marine Corps from 1966-67 and served at Paris Island, SC; Camp Lejuene, NC; and El Toro, CA which was hardest as was air base for soldiers going and coming straight from Vietnam.  Thank you for for thanking me for my service and was more unusual at time for women to join.  In fact, during the time and long before, women could only be 2% of entire military service; so we were quite the minority!

I have to agree with you about not only the chiari diagnosis problem but so many other problems and diseases seem difficult for doctors to find and diagnose.  You would think with all the progressionn in medical knowledge that it would be so much easier.  I am sorry to say but also believe that many still have idea that many women are just depressed (or hysterical) and nothing better to do then come up with weird medical problems.

The doctors ruled out MS several years ago because I had no lesions (or whatever they call it) in brain or spinal cord.  That was biggest reason they did the MRI,  I have had several lyme tests and was told I did not have antibody but I do know that I have had at least three or four tick bites in the past.  Also tested for lupus and also nothing there.  I have many of the fibro tender or areas that when pressed sure hurt and so was diagnosed with fibro.  But I also believe it is a kind of dumping ground if they can not find anything else that explains symptoms.

Believe me, you have nothing to apologize for as far as being bitter, or disappointed by your experience with medical field.  I have a diagnosis of PTSD and did I say what that really stood for (of course, my definition):  personally traumatize by stupid doctors!!!  You are free to use my definition!!!  LOL  Guess that is not very nice, but sure was to the point of many that I saw who tried to blame the fact on being depressed, anxious, or what ever they could think might be wrong with me.  

When I was first diagnosed, I had a wonderful neurologist who worked at  the VA I was going to.  He worked hard on a lot of tests and was pleased that he figured out the problem could be B-12.  But the VA chose to give me B-12 shots without following up why I might be low on B-12 and then the neurologist retired.  After that, it became a game with them, deciding things like I really did not have B-12; not following up on why I had moderate to severe neuropathy; and finally deciding I really did not have neuropathy.

I wrote to head of VA in Washington DC and found that my life at the VA I was going to became a real hostile enviroment forcing me to move to another state.  I had several serious episodes including possible mild heart attack where my lab tests proved cardiac enzymes were elevated and was kept in ICU overnight and then possible TIA and still told it was all in my head.  I moved back to another state where at least I was not treated (all the time) like a basket case.

I guess what depresses me is how many people have to suffer needlessly if only the medical profession had the same kind of morals and wisdom the first neurologist I saw at the VA in 1999.   for some time, I had resigned myself to not being diagnosed while seeing my symptoms are getting worse.  I had a fall (not serious but a reminder, for sure) the other day though my most serious falls are when I fall backwards, completely limp and not knowing why I fell) which  is where I had second head injury (first one also caused when falling backward in 1996) in 1999.  

I have more nerve damage in feet and hands plus new symptom of feeling like I am stepping in water.  I also know I cannot do crafts I did six months ago as same over the years having to give up one after the other.  the closest VA where I could see a neurologist is over 600 miles away and not able to leave home at the moment as have no one to watch my loved and devoted cat, Boots, who is biggest source of companionship; plus cannot think of leaving my home for that long as do not do well if not being able to be at home.  Know this sounds dumb, but my biggest reason for being able to survive with PTSD, and other problems is having the safety of my own home.

I have mentioned to PA here (and she seems really nice) about the sensation of stepping in water and she (or I felt so) kind of brushed it off.  Just could not stand to have that attitude intruding into my life.  I will try harder next time I see her but right now just knowing that I can touch base with you and you are so understanding, you have my heartfelt gratitude.  thank you so much, Selma
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620923 tn?1452915648
Hi...I am 49 , was born with chiari and just this past Feb. '08 was dx.....

It is very unfortunate to be ill these days.....with the mainstream of use of MRI's more conditons are found that most drs were not trained to treat let alone recongnize...so to find chiari u need a dr well informed and looking for it in most cases or a well trained radiologist to read the MRI....the CINE MRI is a flow study....it checks for a blockage of spinal fluid.....there r related conditions with chiari...tethered cord and syringomyelia in which a syrinx forms(tumor like) pocket filled with fluid.....Have u checked for the tender spots for fibro?.....have they checked for lymes,lupus, MS...? there r so many conditions that have similar conditions......I will travel to NY to get to a experienced dr....u may need to as well...travel that is.....there is a group in Montana called chiari people.....J.Carter runs it.....if u feel u have chiari get in touch with her...she can help  u.

Chiari is often misdx'd as fibro....and most dx r first dx as anxiety and I believe it's their way of saving face...cuz it's too hard to say I don't know what u have....and it'd cost them too much money wise to spend too much time to figure it out....sorry I am a bit bitter from my experience with the medical profession.....

What branch of the military did u serve in?...THANK YOU for ur service!!!

God Bless you
"selma"
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Avatar universal
thanks so much for responding. so sorry you have Chiari malformation.  Have you chosen to do surgery or are they treating it some other way.  If you do not mind me asking, how old are you and how long did it take to get diagnosis?

I did have MRI done in 1999 and another one (I believe) in 2002 which doctor said did not show Chiari malformation.  But they did not do anything called a low study (CINE MRI).  and have more then sensed VA would bother giving me another one.  

I thought at one time that Chairi may fit many of my symtpoms but was told numerous times by VA that I did not have one and they suspected my problems were due to PTSD  (of course, have my own definition of that:  personally traumatized by stupid doctors!!....sorry).  

I have already been tested for mineral and vitamine deficiencies and also had had thyroid test done which showed thyroid and have been on supplement for several years.

I have lived in two small towns in Wyoming and Montana and do not have access (or have had) in larger places as have not been out to those plus no referals from current PA that I have here.  

I do think, once my strength is back; I need to be more persistent in getting some kind of neurologist to see me as things only seem to be getting worse.  Fell the other day  (so embarassing) which proves to me that I have to be extremely careful.  I also have to start searching for help for chores that are too hard for me to do both outside (such as mowing yard and shoveling snow, etc) as struggle to get even simple things done.

Lynda
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620923 tn?1452915648
Boy can I relate to u.....I was finally dx with Chiari malformation.....I fell and need surgery on my knee.....Please see the chiari forum...I have posted several times there that chiari is often misdx as fibro.....
Did  u have an MRI?...to rule out chiari u will need one of ur brain, neck, and complete spine...and a CINE MRI(flow study) it makes sure ur spinal fluid is not blocked.
I pray u have something other than chiari, but the symptoms macth mine so closely I feel u should rule it out. I would also suggest u have ur labs run to check for mineral and vit deficencies...and thyroid labs should include TSH-FREE T3-FREE T4 and antibodies....read the health pagesin the forums(right side of screen/scroll down)
Please keep in touch and let me know how u r.

And most important....u must have a neurosurgeon that is a specialist in chiari to recoginize and treat....let me know where u live if u need a list of  drs.

Good luck
Godspeed
"selma"
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