Various symptoms

[vance]

Hi, I'm 37 and I've been dealing with symptoms of numbness and pain for the last 15 years but now they are getting worse. The specific symptoms are a loss of sensation on the complete right side of my body (including my right eye, right nostril, etc etc); muscle twitching in various areas but mostly in my thighs, calfs, and upper arms; joint pains in my fingers (mostly in my two pointing fingers); pain in my both wrists/thumbs; and, at times, severe localized muscle pain throughout my body specifically in my thighs, upper buttocks, knees and upper arms. I also have difficulty getting a good night of restful sleep, so I do tend to be tired most of the time.

When I first experienced these symptoms (fewre then) in 1985 I had 2 MRIs, both coming back negative.  Since my mother and brother suffer from MS the doctors wanted to rule that out, which they did at that time.  With all of this I'm still leading an active life, functioning normally with no significant loss of strength, but I sense the symptoms are getting worse.  I'm confident that stress is not a factor.  I've been through the many neurological tests years ago only resulting in a "your fine" comment from doctors.  Although that was reassuring, it is also frustrating because I know something is wrong and I don't know what it is.  Hence I've been reluctant to go down that path again.  Any advice you give is much appreciated!

[CCF Neuro[P] MD,RPS]

Dear Vance:

I am not sure what to add.  The type of symptoms you describe are abit unusual, in that your entire side of the body is affected.  This would take two separate neurological lesions to occur on different parts of the central nervous system.  A bit unusual and likely impropable, but not impossible.  Since you have no objective muscle weakness in the face of fasciculation and they have been occuring for such a long time, ALS is not a possibility.  I would think that something like benign fasciculations might be occuring.  But these are usually not so uniform to one side of the body.  

I am sorry, I am not able to add much to your diagnosis.

CCF Neuro MD

[vance]

Thank you for your quick response.  Just a note, the muscle tremors and pain spots occur on both sides of my body, it's the numbness that is just on the right side.  Can you suggest a course of action I should take.  I know I need to see a doctor, but I'd rather short circuit the lengthy process of seeing multiple doctors before reaching one that can help.  Also, what tests would you recommend I take.  Again thanks for your help!

[STACIE]

I have had some of the same symptoms as Vance. Beginning about 12 years ago I began experiencing numbness on the right side of my body, the full length including my face, arm, leg. Twitching in my face and widespread muscles aches, I also have an impossible time getting any restful sleep and constantly wake up feeling like I've been hit by a truck. I have also had trouble with balance and some dizziness.  I've been told on more than one occasion that it is impossible for me to walk a straight line, and they're right.  I was diagnosed with TMJ and Fibromyalgia but I have not found any medication to help me. I try to exercise and stretch but I just end up exhausted.  I am only 33 years old and I feel like I'm 100. If you have any advice or know of some other problem that this could be please let me know. It is very frustrating living in constant pain and feeling like you're the only one in the world dealing with it.
I would appreciate your input. Thanks, Stacie.

[Mary]

How can a vaccination cause Parsonage-Turner Syndrome?

[vance]

Stacie, I can relate to your situation.  The best way I can express how I feel when I wake up sometimes is as if someone hit my legs several times with a bat ... without the bruises.  This is why I've been reluctant to see a doctor ... the symptom list is so long I wouldn't know where to start and don't want to come across as a hypochondriac.  In a strange way I'm glad I'm not alone dealing with this.

[CCF Neuro[P] MD, RPS]

Dear Mary:

It is thought that it is an autoimmune disease inducing a lesion in the brachioplexus.  The large majority of people with this disorder usually fully recover.  It is most commonly seen after a flu vaccine.

CCF Neuro MD

[Dana]

To Vance & Stacie:

I can relate to your respective situations.  As a 38 year old male, I'm in my 10th year of neurological symptoms and have a father with chronic progressive MS who has battled the disease for more than 35 years and is nearing the end of the fight.  Naturally, I fear that my eventual diagnosis will be MS but I realize after all this time how lucky I've been--I show no outward signs of any problems still, and no one but me and a couple of doctors know about my symptoms.  They started as subtle sensory symptoms:  quick-hitting tingling and numbness bilaterally with itching and stinging sensations.  They would go away and come back slightly more pronounced and in different areas and with "new" sensations like brief shots of dizziness, tinitus, and intracranial pulsating sensations.  This past summer I started getting tremors, muscle twitching everywhere, deep muscle pains, and deep fatigue, particularly after days of heavy exercise.  I, too, have sleeping difficulties, and wake up tired with a chronic stiff neck and back.  My only clinical findings this summer and fall were:  slightly elevated protein count in CSF, "significant" degeneration of both ulner nerves, and degenerative disk disease with herniation at c5-c6. Head MRI in Aug was normal.  I frequently get numb hands and feet at night.  Anyway, my reason for posting is to let you know that you're not alone in your worries and to welcome any comments or suggestions anyone might have with similar experiences.  Thanks.

[KMH]

My neuro is a Graduate of Case in Cleveland.  Is this where most of the CCF Neuro's were trained?  I used to live in Cleveland and the University Hospitals were second to none.  I strongly suggest anyone on this forum with a problem with their dx look into any of the hospitals or Medical professionals up at the Hospital campus.

[STACIE]

Vance, I am also glad I'm not dealing with this alone but it still makes me sad to think that any other person has to deal with the pain I deal with. I can understand how you feel not wanting to tell a doctor about all of your symptoms. I do the same thing. I never really tell my doctor everything because she will think I'm a nut. My problems go from head to toe, but every test done on me comes back negative. Except occasionally I test positive for lupus. I don't have lupus though, it's just another weird thing about me. I really think I would give anything to have one normal day. I resent having to get up in the morning and put makeup on and go to work and pretend I feel great when I really feel so terrible. I have a terrible sensitivity to touch. When someone just barely touches my arms, especially my upper arms or my legs, I experience pain, just like you said about feeling bruised, it's that exactly. I don't have anyone in my family with MS and I haven't read anything about it but I guess I should. I have never considered that. Anyway, Vance , thank you for the reply and if you can think of anything that has helped you with your symptoms let me know. I haven't found anything so far to help me. Stacie.

[CCF Neuro[P] MD, RPS]

thanks for the comments.

CCF Neuro MD

[kelly]

It is frustrating to see how many people are struggling after many years to find a diagnosis.  It's also discouraging, since I'm just beginning.  I've had symptoms of neck pain, headaches, muscle pain and weakness, twitching, tingling in my hands and feet and dizziness.  I also have a spot on my spine where it feels like someone is pressing on it.  All these symptoms except the last one have been attributed to anxiety (I have been diagnosed with generalized anxiety disorder).  The spine thing was attributed to a pulled muscle.  I also have severe joint pain.  I know anxiety can mimic some neurological symptoms, and indeed a lot of the symptoms get worse when I worry about them, but I am terrified that I have MS or some other debilitating illness.  It all started after I had a baby almost a year ago.  I had a severe headache upon laying down, which traveled all the way down my spine and across my lower back.  Ever since then I just haven't felt right and my doctor won't refer me to a neurologist because she feels it's stress and anxiety related.  I'm very frustrated and scared.  I have a baby who needs a healthy mother.  I know I'm not the original post, but I'm terrified and would so much appreciate some help.  Thank you.

[JENNY]

What could be causing deep aching pain like (a tooth ache) in my shoulder that can intensify. Then the pain travels to my neck causing spasms.  This problem came after a vaccination.  An MRI was done on my shoulder that showed mild atrophy also an MRI of the neck came back negative and also the EMG. The pain some times feels like it is deep in the arm pit. The doctor said it  is similiar to axillary neuropathy and said it will eventually go away. He said it would take up to a couple months, but it has been much longer.  Could I be suffering from something else and what other tests could be done?

[Cecelia Noel]

For the past thirteen years I had a "tentative" diagnosis of Multiple Sclerosis. My symptoms included muscle weakness and fatigue in my legs and sometimes in my arms and torso (it's difficult to sit up some days.) I've also had painful muscle spasms, profound numbness (not like my leg fell asleep!) tingling, sensations that feel like my skin is burned over large areas of my body. In the past, I've also experienced disturbances in my vision, such as "blotchy" or missing gaps in my peripheral vision and what I've called “kaleidoscopic” vision (double vision, doubled!) Sometimes it feels like I have the flu in my spine--very achy in my bones. And a sensation that feels like I've hit my "funny bone", except the feeling shoots through my leg and hips. I've also had a real dizzy feeling that feels more like I lose my ability to tell where my position is in space (if that makes any sense.) My legs seem to tire very quickly, for instance there have been years where I could only walk three or four city blocks when my legs would fatigue and I'd wind down like a clock and stop.

In the past I've worked with a well-respected neurologist (now retired because he has MS) who was very supportive and helpful to me in trying different medications to help manage these symptoms. Until recently, these symptoms hadn't progressed (or digressed) since I first had trouble in 1986, however, the number of body areas affected has increased over time. I’ve had periods of time when I felt only mild symptoms or no symptoms at all for months at a time. However, this fall (1999) I started having more acute episodes of muscle fatigue, parasthesias and trouble with motor function.

Another round of MRI of head, cervical and thoracic spine (a minor blood vessel abnormality showed up in ‘88 and ’95; diffuse and scattered lesions on white matter of cerebrum in ‘99) a spinal tap (showed elevated levels of a protein that could indicate an auto-immune disorder, but no oligclonal bands indicative of MS) evoked response and electromylegraphy tests of both legs (showed nothing abnormal.) Blood tests ruled out Lyme disease, myasthenia gravis, vitamin B12 deficiency, etc. Blood tests in November were normal-high for some autoantibodies, but further testing ruled out lupus, Sjogrens, sarcoidosis, and mixed connective tissue disease. Neurological tests for sensory, strength and reflexes are all normal. I don’t have joint pain or swelling.

I know this is a very long story (it's been thirteen years, after all,) but my dilemma is this: recently I've been having muscle weakness (rapidly fatiguing muscles, difficulty walking more than a city block) and have to use double forearm crutches to support me when I try to walk around, more dizzy spells (again), numbness, tingling in my legs.  I’ve also been experiencing burning pain in my low back when I walk more than 50+ feet. This pain subsides, as my legs get heavier until my lower back feels numb. (Usually after that I’m in danger of falling over so I haven’t tested my reactions past this point.) I think I’m irritating a nerve root in my back, because on the days I push myself past my walking limit, I have sciatic pain down both legs all night.

All of the clinical tests have been normal, now my doctors are looking at me like I’m making it up. My massage therapist quipped, “ THEY can’t figure out what’s wrong with you, so YOU”RE crazy?!” Nobody has actually come out and said they think these symptoms are psychogenic, but I can tell they’re leaning that way. My psychologist, however, is adamant about these symptoms having an “organic” cause. The doctor’s have eliminated the first tier of common symptoms and they seem unwilling to investigate further. All of this is complicated by the fact that in January they encouraged me to take a leave of absence from my job and apply for disability benefits. Now that a diagnosis has proven to be elusive, my doctor’s are backing away from supporting my claim and the private insurance carrier is dragging there feet and continually asking for more information from my doctors. (My family doctor, a neurologist and a rheumatologist have treated me.) It seems that they’ve given up on me and it’s up to me to research and provide incentives for them to keep looking. Is it possible to have lesions, scar tissue, infection/inflammation, cysts or abscesses or mechanical problems, like slipped discs or distorted facets in the spine that cause pain and a disruption in nerve messages that are not detected through these tests. I have never had an MRI of my lumbar spine. I have had several opportunities for trauma to my spine - four concussions, three whiplash injuries, and difficult epidural anesthesias. In my research I have found a similarity in some of my symptoms match those of Chiari Malformation or spinal stenosis. Do you think I should have an MRI of my lumbar spine? Is it within the realm of possibility that an undetected spinal lesion of some sort is causing my symptoms?
Any suggestions for next steps from anyone?

[CCF Neuro[P] MD, RPS]

Dear Ms. Noel:

Your symptoms do not sound like a Chiari I malformation.  The defect would have been easily seen on brain MRI scans.  The syptoms (symptoms) are not classic for a Chiari I, headache, lower extremity weakness, no changes in the CSF except for increased protein, breathing problems.  I would think that you have something else.

CCF Neuro MD