Apparently, I do not have ALS OR MS...WHAT DO I HAVE? I AM CONFUSED!

[mavinlong]

42 of 525 <BR>
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   Subject: Medical Advisory Board Answers <BR>
CC: ***@**** <BR>
Date: Tue, 16 Sep 2003 13:05:33 -0400  Status: Normal <BR>
From: ***@****   <BR>
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Thank you for your inquiries to the Medical Advisory Board.  <BR>
<BR>
You have received answers to your medical question:  Hello<BR>
<BR>
I am frustrated and confused and have travelled from Canada to China seeking answers.<BR>
<BR>
In March I got a muscle spasm in my right, lower abdomen. After remaining stable for<BR>
six weeks it travelled up the muscle at the right rib cage,  back and my right leg<BR>
felt weighted.<BR>
<BR>
My doctor sent me to a physiotherapist who said my left hip joint was out by two cms. <BR>
He corrected this, but it provided some partial, temporarily relief.<BR>
<BR>
I did a google search, "muscle spams and right side of body and reason".  MS<BR>
was the first on the list. I began to get the usual symptoms of MS - severe body<BR>
jerks, dizziness, extreme fatique twice, clumsiness with my hands twice, and my<BR>
whole body was burning.  An ER doctor gave me Oxazepam for anxiety and my burning<BR>
skin went away.  My symptoms may have been psychosomatic or as the result of anxiety<BR>
I am told.<BR>
<BR>
I had nerve conduction test in May - it was normal.  I also had an MRI in June that<BR>
show a mildly flattened spine, and atrophic at C5-6 along with a tiny scar at the<BR>
same level.  An injury is suspected. I had protruding discs but they were not<BR>
causing cord compression at this time.<BR>
<BR>
While I was waiting for my first MRI I began to develop symptoms that mimics ALS -<BR>
muscle weakness in legs, muscle fatigue,  twitches in my calf and other parts of my<BR>
body, body jerks and brisk reflexes.  My Canadian neuro said my neuro. exam was<BR>
normal but he said that he was a little concerned about atrophy at the small muscles<BR>
at my scapula (that is why he gave me an MRI AND he wanted to see the C6 level) -<BR>
the Neuro in China disagrees.  The Canadian neuro said there is winging present.  <BR>
The Canadian neuro said he does not think I have a motor neuron disease or MS.  He did<BR>
NOT tell me what I DO have.<BR>
<BR>
In China my MRI show protruding discs at my cervical spine that ARE causing cord<BR>
depression.  (I saw the picture myself in China but not in Canada) The EMG in China<BR>
(nerve conduction and needle exam was normal - done two weeks ago).  My twitches did<BR>
not show becauses I was not having them at that time, I am told.  The needle emg<BR>
included my scapula. The Chinese neuro. said that I definately do NOT have ALS.<BR>
<BR>
Now my legs continue to weaken, and the muscle fatigue is progressive in my legs (my<BR>
left more that my right) and my twitches are more generized.  The Oxezepam relieved<BR>
my twitches and my body jerks in June for about two weeks, but came back.  The<BR>
jerks, however, are less severe.  <BR>
<BR>
I noticed some pain at my scapula muscles 1.5 month's which have subsided.  But my<BR>
scapula has a strange feeling.  I now have pain on the bottom of my feet and<BR>
buttocks when I sit down.<BR>
<BR>
Finally, I had a thyroid blood test test in China.  <BR>
T3 - .95 (NORMAL RANGE - .66-1.92, T4 - 6.93 (NORMAL RANGE:  4.30-12.50) TSH3 .238<BR>
(NORMAL RANGE:  .38-4.34), TUp - 1.08 - 1.06 (NORMAL RANGE: .73-1.09).<BR>
(Note last summer I had mild hyperthyroidism and my wife had severe hyperthyroidism at<BR>
the same time.  The doctors thought she had post-part hyperthyroiditis, but I do why<BR>
my T4 was slightly low and TSH HIGH.  In the above, my T3 is low normal and my TSH<BR>
is low - our of range!)<BR>
<BR>
Could the cord problem be causing my symptoms?<BR>
<BR>
What do you think is going on???<BR>
<BR>
<BR>
<BR>
<BR>
<BR>
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<BR>
<BR>
Specialt(y/ies): Neurology<BR>
<BR>
<BR>
<BR>
1:  It is possible that the cord problem is causing your symptoms.  This does not<BR>
sound like MS or ALS. Any nerve root impingement on the nerve going to the scapula<BR>
can cause winging.  It is also possible that you have a myopathy called<BR>
fascioscapulohumeral dystrophy (which can be tested for). This sometimes presents<BR>
with scapular winging. Good luck.<BR>
<BR>
<BR>
<BR>
2:  The cord problem could be causing your symptoms of twitcging and atrophy. Your<BR>
thyroid problems, *** well as anxiety, coud be causing yourt fatigue and more<BR>
generalized symptoms. I doubt MS or ALS, given there are no signs of MS on your MRI,<BR>
or ALS on your 2 EMG's. You should get treated for the cord problem, the thyroid<BR>
problem, and if needed, the anxiety. Best wishes.<BR>
<BR>
<BR>
<BR>
3:  With this rather confusing picture, it is hard to tell what's going on. Since<BR>
you focus on the thyroid, it leads me toward the thyroid as a possible cause, but<BR>
that may be erroneous, and simply a result of you focusing my attention in that<BR>
direction. Nevertheless, it is possible that you have had a thyroiditis with some<BR>
degree of fluctuation in thyroid function. This could account for some of your<BR>
symptoms. You'll have to stay in touch with your neurologist, however, because it is<BR>
also possible that you are in the early stages of a demyelinating disease.<BR>
<BR>
<BR>
<BR>
<BR>
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[CCF-Neuro-M.D.-CS]

Your symptoms are rather complex. Based on what you have presented, I think it is unlikely that you have MS or ALS. In regards to your transient hyperthyroidism, were you ever evaluated for auto-immune disorders or inflammatory disorders which could cause the increased thyroid? If you have not, then performing this may be beneficially, because soemtimes these disorders can cause neurologic symptoms as well. Regarding your spinal cord MRI's, without personally reviewing them, I am unable to comment on the results. However winging of the scapula could result form cord or nerve damage at the C5-C6 level. Given the description you have provided, it does not appear the spine problem can be blamed for all of your symptoms. Lastly, anxiety and stress can cause many symptoms, and after everything else has been excluded seeking cousel with a psychiatrist may be reasonable. Good luck.

[lil sunshine]

Hi Vincent, Sounds like you have been through the wringer. I hope that things are calming down.
Have you had your thyroid antibodies checked? My PCP has been running mine for 5 yrs as well as regular thyroid tests. Mine are high and I have been diagnosed with Hashimotos disease a form of hypo  and thyroiditis.It could account for the neuro symptoms or not , I don't know about that. I am even having seizures as well as some of the things you mentioned and many more. I do have brain lesions but apparently not enough for MS. I was also diagnosed with APS {antiphospolid don't know correct spelling} the clotting syndrome. I have one brother with Lupus and another with Graves thyroid so my chances of having an autoimmune disease are great.
Take care,
Bonnie

[AMC5]

I found your post very interesting.  I have had so many tests with in the past year and a half.  Have seen a Neurologist, Endocrinologist, Cardiologist,  and a Rheumatologist,  Have had mri w/o contrast, bloodwork, thyroid ultrasounds, TEE to check my heart, and many more.  Anyway my Neuro wants to do a MRI with contrast to check for MS.  All bloodwork normal so far except for Thyroid antibodies. My Rheumatologist says I have Hashimoto's or Thyroiditis.  Don't really have any symptoms yet, enlarged Thyroid only on exam, but all other thyroid bloodwork normal.  So not on any meds yet for that.  Anyway my problems started May 2002.  I had an episode of visual problems, then speech problems, memory problems, it was pretty severe for about 10-20 minutes, thought I was having a stroke.  Went to ER but by then was fine.  That was when I started seeing my neuro.  He thought possible TIA or complicated migraine. Have had other symptoms occasionally that makes him want to do further testing.  Occassional dizziness, forgetfulness, cognitive problems, wierd sensation on left leg..... My sister has Lupus, Sclerderma, Sjrodjens and mother has Thyroid problems.  So just waiting to have MRI with contrast to see if it is ok which I have to wait until I am done nursing my son before I can have that.  My symptoms don't last long and are only occasional.  But saw that we had alot of similar things, what symptoms have you had?  I also had a positive ANA which is why I had to see the Rheumatologist. Just curious about your situation.

[lil sunshine]

I have been seeing a neurologist since Jan 00, in Nov of 99 I had what I thought was a stroke. The whole left side of my body went numb but no pain that I can recall. I have been having seizures periodically since that time. Too many MRIs to remember and only the same 2 pitiful lesions in my frontal lobes.
Right now the left side of my face is not equal to my right, had this lots of time along with the twitching. Ear loss problems and double vision. Weird tingle down my body , almost take my breath away sometimes. Spasms of pain in legs and rib cage area.Right arm pain that comes and goes, used to be on the left side, EMG says no carpel tunnel.Burning, numbing and tingling in feet. Restleg syndrome, as well as what I like to call vibrations, because it's not tremors. Kind of like when your pager goes off. Constant need to urinate and frequent UTIs. Irritable bowel syndrome, never accidents but darn close. I fluctuate between losing weight without trying or gaining the same weight back regardless of how much I eat. No appetite to speak of, have to force myself to eat somedays. Costrochonritis too much, tired muscles. Can't rememeber right words to use or spaced out feeling{I take no medication as I tend to react to even the simplest}. Loss of balance, walking into walls usually to the left. Most of my symptoms tend to be left sided. I smell smoke or burning rubber when it's not there. It comes and goes sometimes staying with me for weeks at a time. I hate smoke!
I have had 2 low positive ANAs and even have the rash on occassion along with allergy to Sulfa drugs. Drs will comment on my red face. High CRP but normal ESR. Last rheum dr told me I have too many symptoms for just one connective tissue disease. He didn't even charge me as he knew I was paying outside my insurance and that I should go back to military dr and demand some treatment.
I go back to neuro in Oct so I will probably have more tests and probably another MRI. I hear that it takes even longer than the time I have spent in Limbo to get a formal diagnosis.
I have time I guess.
Take care,
Bonnie

[mavinlong]

Yesterday I saw the Chinese neuro again as my legs grow weeker.
I also saw an endocrinologist who said my thryroid is normal.

The neuro wants me to have a xray of my spine and send me to a neuropsychologist.  WHY A NEUROPYSCHOLOGIST???  I do not have brain damage.

The neuro also wants me to see her professor (she is also a professor of neurology) about my scapular winging.

This has been a difficult experience.  Once I diagnosed myself with MS and then ALS, but I am told I do not have these.  Nevertheless, the first thought that came to my mind when I woke up for three month's was "I am dying".

DOES THE NESSAGE BOARD NEUROLOGIST HAVE ANY IDEAS.  

I HAVE A NEW WIFE AND 20 MONTH OLD DAUGHTER.  I WOULD REALLY APPRECIATE SOME INPUT. THIS HAS BE EXTREMELY HARD ON MYSELF AND MY FAMILY.

I HAVE SEEN SO MANY DOCTORS, BUT NOT ONE HAS GIVEN ME A DEFINATE
DIAGNOSIS.

[mavinlong]

Yesterday I saw the Chinese neuro again as my legs grow weeker.
I also saw an endocrinologist who said my thryroid is normal.

The neuro wants me to have a xray of my spine and send me to a neuropsychologist.  WHY A NEUROPYSCHOLOGIST???  I do not have brain damage.

The neuro also wants me to see her professor (she is also a professor of neurology) about my scapular winging.

This has been a difficult experience.  Once I diagnosed myself with MS and then ALS, but I am told I do not have these.  Nevertheless, the first thought that came to my mind when I woke up for three month's was "I am dying".

DOES THE NESSAGE BOARD NEUROLOGIST HAVE ANY IDEAS.  

I HAVE A NEW WIFE AND 20 MONTH OLD DAUGHTER.  I WOULD REALLY APPRECIATE SOME INPUT. THIS HAS BE EXTREMELY HARD ON MYSELF AND MY FAMILY.

I HAVE SEEN SO MANY DOCTORS, BUT NOT ONE HAS GIVEN ME A DEFINATE
DIAGNOSIS.

[Craig]

I'm not a neuro, but all three answers from the docs in your original post are excellent. Self-diagnosing from the internet can become very counter-productive, take it from one who knows. I too, have disk/cord issues, which are probably responsible for 90% of my symptoms, the real trick is to believe it. Take care.

[mavinlong]

Thank for you response.

Last summer I had hyperthryroidism and my tsh was low and my T4 mildly elevated.  I wrote it the other way round in my original post.

I saw a endocrinologist yesterday and he said that my current thyroid is ok, but I should be tested again in three months.

[mavinlong]

What are the chances of me having fascioscapulohumeral dystrophy
as suggested by one of the doctors in my original post??

Also, if I take enough Oxezepam my muscle twitches usually cease.

Thank you again to everyone for you feedback during the nightmarish time of my life and thank you from my new wife and baby daughter!!

[Spring-02]

I don't know what is worse being told you either have ALS, MS or some other disorder, or being told, that they just don't know what the cause is.  If nothing shows up on the diagnostic testing, and you don't have a label for your problems, then you are usually labelled as being psychotic, stressed out, or suffering from a phobia or anxiety.

I was sent to a pyschiatrist for an independent medical assessment and his recommnendation was that I work with a personal trainer to help improve my walking ability and strengthen my muscles.  I am all for that, but I wonder what he can suggest to help with my unsteady gait, the shooting pains in my feet, fingers and toes and weakness in my right arm. It feels like I smacked my elbow on something hard and the pain radiates from my hand up to my elbow or my foot and leg feel like they are burning up.  

I feel guitly complaining about how I feel and that my quality of life is gone downhill when I hear about how young people are struck down with cancer, heart attack etc. I don't have any other health problems but can't explain why I stutter, or can't get my words out and how the slightest noise can cause me to startle so much.  I don't know why I get dizzy and lean to the right when I walk and lose my balance on slopes or uneven ground.  I am scared of falling especially with winter coming on and slippery sidewalks, streets, etc.  My Disability Insurer wants to get me back to work but there are days that my fingers and hands are so numb that my sense of touch is affected and the pain never leaves my foot.  

I am getting used to the sudden movements of my fingers, hands, arms and legs just shooting out on their own but the NIGHTIME JOLTS scare me and seem to be happening more often. I used to get them about once every two weeks but lately it is sometimes two or more times a night.  I can feel my heart jump practically out of my body and it usually happens just as I am falling to sleep.  I never can seem to get into that deep sleep so I wonder if my automic nervous system is affected by this unknown disorder somehow, and if the sudden jolts are a result of that.  I hope that somebody else out there can relate to these sudden jolts and if there is any treatment to help or explanation for them.

Right now I am being evaluated every three months by my PCP and I have learned to live with my problems.  However, I do have grown children and grandchildren and if there is a heriditary aspect to my disorder, I would like to know that in case they may have to deal with something similar when they hit midlife.  

I am a female in my late fifties with no history of mental problems, mood disorders, addictions, phobias, etc.  I must have seemed awfully boring to the psychiatrist as I didn't have any relationship nor work problems, had a loving supportive family and even attended church faitfully every Sunday.  I certainly did not want to be sick or become physically limited as this was to be the best time of our lives.  We were looking forward to retirement, golfing, travelling etc.  Now, I realize that without good health all the material things in life are of little significance.

So, please hang in there all of you who still don't have any answers.  Keep believing in yourself as you know your bodies the best and what is going on.  I sure knew what normal used to be like before all these weird symptoms moved in with me.  I am not giving up hope that they will pin a label on it and then I will know what I am really dealing with, and how it may affect my future.  Fighing the UNKNOWN may be the hardest battle of all, as that is what I have been picking up on from reading these posts.

Take care,
The Canadian

[janmafian]

Hi,

I'm 28 yo male. Along with many others symptoms (which i described in comment today for movinlong) i also had several time that heart pound just when i was fallin asleep. At that moment i actually thought that i had a heart attack and i seen my vains desapearing. After that deep pound that my heart almost jumped out of my chest the heart started beating like 300 bpm and was slowly calming dowm. Even it was over a year ago i remember that feeling very well and i'm just wondering when it comes back.


take care, John.

[janmafian]

Hi,

I'm having all symptoms that you have for years, but never got checked by neurologist. The overactive bladder..the doctors always got me some pills...the left side numbness...heart attack feeling...they said it's my stomach...finger numbness, arm asleep....they sent me to chiropractor....

But lately I'm recognazing, that i belong to many other people who have nerve problems. I'm experiencing many other chronic pains, from spine, joints, bones, abdominal, head, facial, ringin ears, week legs and arms, nervousness, fear, sweatting in sleep, burning muscles, rash (pusy blisters, that don't go away) on finger, cracking nails, red face, mosquito like bites-not acne, week and painful fingers when doing something, muscle stiffness, hard to bend over, buttocks,chest pain, bowl problems, urinating problems....just name it I got it. I actually had first symptoms 10 years ago, but never paid attention to it. Now it's getting worse, and I'm just wondering what's going on?/??


I've read the same symptoms many other people and all the exams that they got and they have no diagnoses....I don't know where to start, what to do...

John, 28 yo.

[lil sunshine]

Have you been checked for Lupus? They told my brother that Lupus is a woman's disease which is really not true, and he has lupus and APS the clotting factor. I tested positive for APS but even with 2 +ANAs and documented rash on my driver's license I can't get a diagnosis. They attribute my joint pain to my "bad" leg that had a tumor. Too long of a story for that but I have so many symptoms of both MS and Lupus.
Take care,
Bonnie

[gothair2dye]

Geez, I have at least 2 of each of your symptoms,
Short story, woke with blurred vision bad, lasted for 3 days went to ER could not see the words on paper or numbers on the phone, diag: possible MS. Next week got dizzy, weak strange feeling, then my speech went to a studder and fast, my brain knew the words to say but they did not come out of my mouth without studder but they where clear not slurred and my mind was searching for an easier word to say, ER- CT scan, normal, diag: stress!!! UH what my blood pressure was sky high, I felt like a truck ran me over and backed up and did it again. Okay, after years of aches, pains, chronic fatigue, swollen joints, NIGHT JOLTS, sweating, numbness in the hands and feet, cold so cold fingers and feet, I had been told  Lupus, well this latest development was not related to Lupus, I saw the Rhemotolgist, NEG FOR  graves, lyme, ANA test neg one of the lupus tests was a little off, but nothing of lupus in the brain. MRI was normal, VER test slightly abnormal, any way NOW they say complicated migraines!!! Well, I never had a headache until my sight went strange on me, now migrains 6 times a month. I too have hunted the net. It seems like MS or Lupus, but...I am going to the U of W thurs for a gamit of tests, the not knowing makes you nuts, we are not crazy it is not stress, we are stressed by the not knowing!!! I was so happy to hear Migraine, but then you add up the rest and it seems only a symptom to me? Until I have second opionions I can not rest. After all folks Doctors are "practicing" it says on the door, there not perfect, but we know our bodies, keep searching for answers, try and stay calm, use logic, and try to be positive, be pro active.
Plus it is not uncommon for men to have Lupus and not uncommon to have more then one autoimmune illness, and when in remission it is hard to dx.
Oops sorry long winded, just thrilled to find a group that understands as it is frightening. 40 with young kids i want answers NOW! Good luck to you all.

[positron]

2 yrs ago I began with very similar symptoms, and was referred to a neuro for tests. Several mri scans and lumbar puncture showed mild degeneration of parts of the spine, put down at the time to 'wear and tear' ( I was 49 yrs old at the time.) mri also showed multi-cystic areas along right side of thyroid, which were biopsied under ultrasound, and showed no neoplasia. Thyroid function was normal. A small part of my cervical spine was shown as having abnormal bone marrow, but no explanation was given. Over the ensuing 9 months, I was given a tentative diagnosis of the onset of ms, as my reflexes became brisk, romberg positive, I developed ataxia, and ultimately lost my ability to balance, and my ability to walk. As all this progressed, I showed many of the symptoms that you describe. Then I began to develop muscle stiffness, spasms, spasticity, and seizures. On re-exam by the neuros, they decided to test for Stiff Person Syndrome, an extremely rare condition, to discount it. The main tests are to test the blood for anti-GAD antibodies, and to test afected muscles under emg. In the 3 weeks it took for the results to come back, I was treated like some psychiatrically disturbed hyperchondriac, but the results came back positive. Since then, all my skeletal muscle has been affected, I am pej-fed as I can't swallow, catheterised suprapubically, have dystonia in both legs, and only have use of 1 hand. I'm completely bedbound.
The point of telling all this is to suggest you could maybe ask for an anti-GAD blood test, as I feel an earlier diagnosis would possibly have made a big difference to the outcome in my case.
Hoping this might just help, and wishing you all the best, Positron.

[KC1969]

I have very similiar symptoms. In March 1994 I had problems with my vision. Weakness in my left side of body. I could barely walk as my legs were wobbly and weak. My hand writing has gone down hill, sometimes I do not recognize it. My typing has slowed from 106 wpm to 35 wpm. I went to the doctor and he dx a pinched nerve. Symptoms continued, 2 wks later I went back to the doctor as it seemed to get worse. He sent me for an MRI to rule out MS. MRI showd fine, so he put me on ELavil which did not help. A month later I was sent to cardiologist for a stress test. THe test was fine so had an ultrasound and it showed possible mitral valve prolapse, no further testing done to prove it. I have a murmur which I was born with so that was not news to me. I was sent to neurologist, he said my symptoms were consistant with diabetes or MS. Diabetes test was fine so had another MRI without contrast. It came back fine but Neuro said he was not ruling out MS. In 1995 went back to Neuro as symptoms seem to get worse. Another MRI showed fine. Catscan to rule out a stroke, it was fine. I have delayed reflexes in both legs. Was sent to PT to strenthen muscles in legs. Did not help. Went to another internal med. doctor, he said I probably have MS so he ordered an MRI which came back fine so he said i have TIA's. In 1997 I was hospitaled for anther UTI (which I have at least once a month). I have very little bladder control. This time the xray urologist did with contrast showed white spots on my right kidney. Kidney stone was ruled out as the spot showed up not your usual kidney stone would. Again, in 1998 my urologist hospitalized me for UTI. The xray again showed white spots on my right kidney. Urologist is now baffled as to what these spots are. No kidney disease or cancer so he rules them out as just "being there". 1999 I have now lost my periphial vision and field vision is not good. 2001 I wear hearing aides for what is said to be sensorineural hearing loss. 2003 I went to sports medicine doctor to see if he can find something wrong. He did a bone scan with and w/o contrast. Scan showed white spots which he ruled as arthritis in my feet. Right leg is weaker than the other based on muscle tests. He sent me to physical therapy to strengthen the muscles. Still weak. He ordered a nerve conduction test which showed minor nerve damage in the upper left leg, nerve doctor was not concerned. The left arm showed severe nerve damage. He ruled as a pinched nerve at the elbow. So he had me wearing a padded elbow band to protect the elbow to bring back the feeling. 10 months later it is still numb. Sept. 2003 I have very weak legs with pain and burning sensations. Went to ER Sept. 29 had a doppler to rule out blood clots. ER doc put me on neurotin and said it is neuropathy. Oct 2003 I have been walking with crutches for the past two weeks as my legs are not able to stand up alone without help. I go back to sports med. doc Oct 30, 2003. Will see what he says this time. I have a low stress job and I am an easy going person. I take each day as it comes and I am a stress free person. My cholesterol is fine and my blood pressure runs about 100/60 and heart rate around 80. So I know it is not stress.

[jman]

I was doing some browsing and found this site.  The symptoms that many of you have described(cronic fatigue, muscle weakness in legs, anxiety, MS symptoms and the list goes on) are typical symptoms of heavy metal toxicity.  Mercury, and lead probably being the worst offenders.  I myself am recovering from Mercury toxicity.  Before I tell you what my symptoms were, let me say that for heavy metals the symptoms can vary from person to person.  So if you don't have some symptoms I had it still may not rule this out.  About three years ago(I was 29) I had lots of fatigue, dizzyness (especially during and after a meal, coffee, or chewing), panick attacks,weak legs, heavy arms somtimes at night, could not concentrate, rash mostly on arms and chest(flat), heart palpitations, felt like my body was going to stop, cold hands(thyroid checked OK), digestive problems, bad gas, often worse when I was around people. The symptoms go on, but that's most of the big ones. After doing many of the traditional tests such as heart, lungs,gallstones,MRI,CT scan, and many others I still had 0 answers. Then I went to a naturapathic doctor who used Electro Dermal Testing.  Within 15 minutes of arriving in the office I knew what was causing my problem. Mercury from my fillings.  I was a toxic waste dump for my fillings. The mercury had been slowly erroding my health and now my body was saying enogh is enough!  I would love to tell you more, but I want to see what questions, responses , come back.  I also will tell you that asking questions about this never hurt anyone and may just be what you're dealing with.  I trust this will be of help to you folks.

[wizzy]

I've read all the letters on this page and it seems to me that an awful lot of you sound like you have Fibromyalgia.  I spent years going back and fore to Drs with many symptoms and all my tests came back negative too. I found Dr R. Paul St Amands website, began the Guaifenesin Protocol and havent looked back, I have my life back.  The website is www.fibromyalgiatreatment.com  have a read of it and see if it sounds like you.
Wizzy

[AngelicBrat]

Hello Everyone!

Have those of you with the symptoms above been tested for Antiphospholipid Syndrome (APS or Hughes Syndrome it is known as)?  It sounds to me like a few of you fit the criteria for it.  I have APS and really had a heck of a time being diagnosed because I exhibit so many symptoms of MS!  The symptoms of APS are:

Fatigue             Migraines or headaches

History of clotting event, such as TIA's, strokes or DVT's (leg clots)

Circulatory problems         Numbness and tingling in extremeties

Brain "fog"                  Pins and needles

Visual disturbances, such as flashes of light to full vision loss (much like MS- Optic Neuritis can occur)

Co-ordination Problems      

Speech problems (slurring, mixing up words)

Muscle cramps or pain in muscles

Dizziness (vertigo)           Memory Loss

Livedo Reticulitis (blotchy web like pattern on skin)

Epilepsy                      Low platelet count in blood

Blood clots in the body ANYWHERE       Miscarraiges in women

The treatment for APS varies patient to patient.  In those patients with some symptoms and in the presence of abnormal blood work on 2 occasions that have NOT had a severe clotting event the first line of treatment is Aspirin.  In some patients, Plavix is also used.  In those of us that have had a major clotting event (stroke, heart attack etc)  then they use Heparin and/or Warfarin to treat.  I know with me the warfarin worked WONDERS on me!!!  Now- you can have APS without the positive bloodwork.  Some doctors rely fully on the blood work (the anticardiolipin test and the Lupus anticoagulant) to diagnose APS, but in patients with the symptoms they can be treated without the blood work.  One doctor states "listen to the patient, for they will tell you the diagnosis".  He also says that medical science is not perfect, therefore blood work can vary from day to day.  That means that on the ONE day you were tested and NEGATIVE it may have been your body wasn't circulating the antibodies as profoundly.  They would have to test you every day for MONTHS to get that ONE positive result, and usually by then its too late.. you have a clot and finally the blood work is positive.  I hope this helps you guys.

~AngelicBrat

[fixit]

Your comments interest me in that I have a slightly elevated anticoag. lupus or antiphospholid test after slightly elevated ANA test.  My only other symptoms are tingling and pain in primarily left arm and shoulder, right leg below knee. (This is pretty much continuous).  When bad it spreads to tightness in neck and throat. Occassionally at night my whole body gets the tingles and pain. I have had migraines in the past (years ago they were 4/5 times a year, but only one a year or so for the last 15 years).  For the past three fall seasons I have had vertigo.  I have no clotting issues (that I am aware of).  Blood pressure is low.  Rhuemy put me on prednisone to indicate autoimmune disorder -- or maybe not, depending on its effect.  So far - 6 days, no change.  I don't know when I should see change, but I am thinking it is not working.  Only relief is with low dose of lorazapam 3 - 4 times a day.  Do you think my low test level might be false positive.  My symptoms don't seem to fall into the category for this disorder-or any other.  All neuro tests have been negative.  Any research that you have done that would indicate I could have your disorder? I am searching for anything to go back to feeling like myself.  Thanks.

[fixit]

One more thing - I am not fatigued physically at all.  Can still keep up all activities.  Mentally it is starting to wear on me though.  Most disorders list "fatigue" first, so I am at a loss.  Thanks for any help.

[AngelicBrat]

Hello fixit!

AHA I figured that you may have already had the anticardiolipin or Lupus anticoagulant test positive just by what you had said earlier.  If you have the antibodies circulating I would be very suspicious that you have Antiphospholipid Syndrome.  Do you get migraines? This may be a premature positive test, it could be that you haven't had a clotting event yet.  Cudo's to the doctor that tested you though!! There aren't too many Rheumatologist's out there that know lots about APS and its effects, but I am impressed that you have had a doctor that tested you.  With that being said, you do have symptoms.  The tingling could very well be from APS.  It could be at a starting point.  You don't want to have a clotting event, trust me!  Have you been put on aspirin, Plavix or warfarin?  I am assuming no.  The Prednisone won't help APS, but it will help with Lupus symptoms (if you have Lupus symptoms with your positive ANA).  You really need to see a Rheumatologist that specializes in treating Lupus AND APS patients.  Think back to your childhood and teenage years too, that can be the key in figuring everything out.  Did you have migraines as a teenager?  Take care!!

~Angelic

[fixit]

My Rhuemy seems to be pretty good.  Would the APS account for the flu-like pain in my left arm every day. Strangely, the only relief has been lorazapam, at a low dose, as needed. Also, I had severe migraines from 7th grade on until my mid 20s.  In September I had what they called an "aborted" migraine.  I got the aura, but no headache, however, the aura lasted about 5 hours and the doctor sent me to the emergency room to make sure it was not stroke related.  They did a CT scan and all was fine.  Problems with left arm started about nine months ago.  Rest of the symptoms didn't crop up until end of October.  I go back in Feb., to reassess after I am off the Prednisone.  Any more insight is appreciated.

[fixit]

Also - I have no other symptoms that would indicate Lupus - no  joint problems, hair loss, rashes, etc.  I truly am beginning to think that its a "head" problem, since blood tests don't seem to correlate too much to symptoms.