any idea what this is?
 

I was dumped by the medical system as having symptoms "all in my head." Now I can hardly move because of what is a systemic wasting illness. What hurts the most are the nerves and muscles through my upper back, neck and craniofacial. I don't think what I have is common, perhaps even rare. My medical record has both autoimmune thyroiditis and hints at Ehlers Danlos or Marfan syndrome or even scleroderma. I can't make sense out of my own medical records. It is very painful and debilitating and I definitely want to know what the prognosis is but wonder if a specialist will ever know. I had ataxia that came on suddenly and acute onset of muscle wasting. I think it had been going on for awhile but I just didn't understand what I saw about my own body.

This may not be your problem, but it could be. And besides the fact that it can happen to anyone, people with autoimmune problems are even more likely to be affected.

When B12 malabsorption is allowed to continue untreated long enough, the symptoms become multiple and are often dismissed by doctors as being all in one's head.

The good news is that the B12 possibility can be addressed safely and inexpensively. Do read my non-commercial website. Not enough there to take a long time, but important information that most doctors are too many years behind to know.

rose

Hi everyone, I'm new to this site and having been reading your post. It's so amazing how my life has revolved. Since the 1980's I had been diagnosed with Fibromyalgia or Chronic Fatigue syndrome or various pain syndromes. In 1992 I was diagnosed with bilateral Thoracic outlet syndrome. I had a first rib removed on the worst side with was the left. I didn't have an extra rib. Anyway, the removal of the rib helped some on the blood flow but I continued to get worse on the muscle spasms and the high variaty of symptoms many of you post here. The only way I could slow the progression of the problem was to stop working. As years have gone by I have pushed to find out what was really causing my problems. As I know, many doctors use Fibromyalgia as a waste basket term when they really don't know what's wrong with you. Finally my symptoms progressed to the point of having really bad balance problems and falling, along with drop falls and many other often brain related symptoms. My headaches I dicovered was originating from the back of my head as well. In august of this year I had an MRI of my brain and cervical spine. Finally the answer came. I have a Chiari 1 Malformation. This is where a portion of you brain drops down in your spinal canal. The radiologist missed it in 2005 on other MRI's and this is VERY common to happen. Even the best Dr's, Radiologist, neurologist, neurosurgeons, etc. know nothing or very little on this condition. To make a long explaination short. It can cause so many symptoms a doctor will think you are crazy. The more I have researched this problem, it has come to me that since Chiari makes neck muscle and shoulder muscles spasm due to nerve pressure in the brain, the chiari condition was very likely the cause of my TOS. Some of you may already know that many people with fibromyalgia are often diagnosed with TOS. The real clincher here is in recent years many people with fibromyalgia/chronic fatigue, etc, are being diagnosed with Chiari 1 malformations. Now, the Erlos Danlos comes into play for possibly those of you that have hypermobility. Erlos Danlos can cause Chiari 1 Malformations and I am reading that it also can be a cause for TOS. A tethered spinal cord which is found at the bottom of the spine can also cause Chiari 1 Malformations. (This also sometimes being a cause for spinal deformaties and/or increased lower body problems). Chiari can also be caused by literally having too small of a skull for your brain. There are many reasens this condition can happen. If any of this sounds interesting to you and you would like to follow it up more, do searches on the internet for Chiari 1 Malformation. The symptoms are never all the same in every person. Thus making it harder for Dr's to diagnose. Even if it's seen on an MRI, radiologist or Dr's often dismiss it as an incidental finding. In recent years Chiari specialist have discovered much more about this condition. They and many others are trying to educate others in the medical profession, but it will take time. If you find through more research you symptoms are very simular to Chiari and you have had an MRI of your cervical spine and/or head, you may consider having it looked at by a neuroradiologist that is educated on Chiari. Be aware that many doctors will even dismiss Chiari as a problem. This is because they are from the old school and not up to date on it. I hope this post might help many of you that suffer. There are surgeries that can help this problem and sometimes make all the symptoms go away. If I had known in 1992 that I had Chiari, I would have never had my left first rib removed. There are support groups on the internet for this condition as well and many people there that can be of help with those of you with questions. I am having a decompression brain surgery done soon by a Pediactric Neurosurgeon that is not with one of the specialty clinics but is with a University hospital. He is well educated on this condition. For those of you that's heard "It's all in your head" It may very well be. :>) Dee

Chiari & Ehlers-Danlos
 

Dee.... thanks for sharing. Much is very familar--My constant headaches (mostly back of head/neck pain), severe spasms , etc. Dx'd : occiptal neuralgia
but the reason or DX for drop attacks/ falls??? Seizures were ruled out . Chiari was suspected by PCP many years ago but specialists/ tests say NOT. So, what -- why do I have these drop attacks/falls???

Began after I was hit by a car 12 yrs ago. TBI -Traumatic Brain injury - is what's been blamed for ongoing brain & other neuro problems but TBI/PCS (Post Concussive syndrome) is broad & often controversial and for me, w/out any real, good treatment options or interventions.

Severe chronic pain & debilitating fatigue w/ sleep problems, did get DX: fibromyalgia
(which I too agree has become a waste basket Dx )
while FMs does cover some of my issues, still too many unanswered questions and ongoing problems.


I 've felt crazy & frustrated --going from DR to DR with so many issues & symtoms; tests , when done, have been Negative. Good news on one level but I do feel there's a real reason for my problems.

I've wondered has something been missed, am I testing Negative to something I may have --like RA or other auto immune disorder
-my mother had Many as does my father; many of their symptoms & manifestations I also have .
I know several of these do have genetic links. Learned that some people are SeroNegative, which makes getting Dx & treatmt very challenging. while appearing like a neurotic hypochondriac or drug seeker.

I don't know ... except that I'm in pain , dysfunctional and trying to remain hopeful that someone/thing will help


I will research Ehlers-Danlos more. Thanks for sharing your story.
Wish you the Best...



ROSE.... I've been taking methylB12--1000mcg day; perhaps should be using more?? also take B complex , Magnesium & other supplements & vitamins. will check out sites & forums-for VItamins, supplements, etc-- again to see if there's something else. There's lots of excellent info there, thanks to you & other knowlegable contributors...
Fatigue is one of my worst problems. mainly from sleep problems (due to pain & neuro stuff)