Lupus, ALS, or unrelated symptoms?

[TotallyLost]

Hi -

I apologize for the length.  Hopefully someone can help, because I'm totally confused, and consumed by fear. My doctor suggested I may have Lupus, and I have even worse fears of ALS.  I'm 24, and I recently started having fascilations absolutely everywhere. Arms, legs, face, stomach, toes, bottom, you name it. They are continual.  Even my eyes feel jumpy sometimes, and my head feels like it's hard to hold up while sitting still.  My left arm/hand feels kinda heavy and weak/without coordination.  I frequently drop things I'm holding in my left hand, they just slip right out before I realize I've let go, and left foot causes me to trip now and then.  Strength and coordination tests are normal, but on reflex tests I'm 2/4 - no reflex reaction in my arms, normal in legs.

Recently I'm having trouble swallowing, and have a continual "full" feeling in my throat.  Have also had a few laryngospasms in the last year, and several bouts with tonsilitis - but my throat and mouth are constantly sore, and irritated by allergies (constant PSD) - sometimes causing thrush, and the Dr. says I could even have GERD.  I am currently taking Anaprox (for extreme pain during menstruation), Singulair, Flonaise, Advair, and Alavert, and something for GERD, I forget the name.

Some history -- I have had Raynauds - lousy general circulation - and mild signs of Carpul Tunnel and swelling/achey joints in my hands for for over ten years.  I have very tight muslces and a lot of stress in general.  I also suffer from asthma like symptoms (though I have pigeon breast, and that may cause the breathing difficulties), and recently - intermittent heart palpitations.  Recently I even had a brief spell of high blood pressure and dehydration - I'm still overly thirsty.  My memory and mental organization are absolutely lousy, and I go in phases of being disoriented, slurring/mixing/forgetting words, and experiencing no symptoms at all.  This is so frequent that it actually causes my IQ to vary, and it has happened for as long as I can remember.  I also get ill and vomit sometimes just before menstruation, so it's suspected I have a hormonal imbalance.  There is also incidence of gout in my family, and I have had leg joint pain since I was very young.

Had full metabolic testing, all normal.  Now my doctor suggested that I might have some sort of autoimmune disorder, and suspects Lupus.  From what I've read, my neurological symptoms sound more like ALS.  Does anyone have any input?  Could these things be ALS, Lupus, or a coincidence - the weakness from a pinched nerve maybe?  Hormonally induced, or something else entirely?  Please help, if you can.

[Kevin Pho, MD]

Fasciculations, problems swallowing, cramps, fatigue, and problems breathing can all be caused by ALS.  Of course, there are many more common illnesses that can lead to these symptoms as well.  

However, if there is concern about ALS, you can discuss being tested for this disease to give some peace of mind since this is obviously concerning you.  

Testing can include electrodiagnostic testing as well as a cranial and spinal MRI.  

These options can be discussed in conjunction with a neurology evaluation.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
http://www.straightfromthedoc.com

[ArmourGal]

Since your doc suggested an autoimmune disease, I am going to say it sounds like Hashimoto's Disease, autoimmune thyroid disease.  I have it...and before treatment with thyroid hormone, had all the symptoms you have.  

Loss or coordination, poor reflexes, especially the trouble swallowing (that's a big Hashimoto's sign), frequent infections, allergies, menstrual irregularities, carpel tunnel, aching joints, cold extremities, cognitive difficulty - yep, everything you mentioned is a hypo symptom.  I also
had the asthma like symptoms - which is from weak breathing muscles and hypo fluid build up.

To check for sure, you should ask for the following tests:
TSH (thyroid stimulating hormone - new top end of range is 3)
Free T4 (storage thyroid hormone)
Free T3 (active thyroid hormone)
TPO - (thyroid peroxidase - thyroid antibodies)

The docs usually just like to do the TSH, but it is really important to have all the tests, especially in your case, the thyroid antibodies.  

Best of luck to you.

[Carol in PA]

To Totally Lost:
You may want to investigate Lyme Disease.

The Canadian Lyme Disease Foundation has a good list of symptoms:
http://www.canlyme.com/
(click on symptoms)



          *  Head, Face, Neck

   1. Unexplained hair loss
   2. Headache, mild or severe, Seizures
   3. Pressure in Head, White Matter Lesions in Head (MRI)
   4. Twitching of facial or other muscles
   5. Facial paralysis (Bell's Palsy)
   6. Tingling of nose, (tip of) tongue, cheek or facial flushing
   7. Stiff or painful neck
   8. Jaw pain or stiffness
   9. Dental problems (unexplained)
  10. Sore throat, clearing throat a lot, phlegm ( flem (phlegm) ), hoarseness, runny nose


          * Eyes/Vision

  11. Double or blurry vision
  12. Increased floating spots
  13. Pain in eyes, or swelling around eyes
  14. Oversensitivity to light
  15. Flashing lights/Peripheral waves/phantom images in corner of eyes


          * Ears/Hearing

  16. Decreased hearing in one or both ears, plugged ears
  17. Buzzing in ears
  18. Pain in ears, oversensitivity to sounds
  19. Ringing in one or both ears


          * Digestive and Excretory Systems

  20. Diarrhea
  21. Constipation
  22. Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  23. Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)


          * Musculoskeletal System

  24. Bone pain, joint pain or swelling, carpal tunnel syndrome
  25. Stiffness of joints, back, neck, tennis elbow
  26. Muscle pain or cramps, (Fibromyalgia)


          * Respiratory and Circulatory Systems

  27. Shortness of breath, can't get full/satisfying breath, cough
  28. Chest pain or rib soreness
  29. Night sweats or unexplained chills
  30. Heart palpitations or extra beats
  31. Endocarditis, Heart blockage


          * Neurologic System

  32. Tremors or unexplained shaking
  33. Burning or stabbing sensations in the body
  34. Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
  35. Pressure in the head
  36. Numbness in body, tingling, pinpricks
  37. Poor balance, dizziness, difficulty walking
  38. Increased motion sickness
  39. Lightheadedness, wooziness


          * Psychological well-being

  40. Mood swings, irritability, bi-polar disorder
  41. Unusual depression
  42. Disorientation (getting or feeling lost)
  43. Feeling as if you are losing your mind
  44. Over-emotional reactions, crying easily
  45. Too much sleep, or insomnia
  46. Difficulty falling or staying asleep
  47. Narcolepsy, sleep apnea
  48. Panic attacks, anxiety


          * Mental Capability

  49. Memory loss (short or long term)
  50. Confusion, difficulty in thinking
  51. Difficulty with concentration or reading
  52. Going to the wrong place
  53. Speech difficulty (slurred or slow)
  54. Stammering speech
  55. Forgetting how to perform simple tasks


          * Reproduction and Sexuality

  56. Loss of sex drive
  57. Sexual dysfunction
  58. Unexplained menstral pain, irregularity
  59. Unexplained breast pain, discharge
  60. Testicular or pelvic pain


          * General Well-being

  61. Unexplained weight gain, loss
  62. Extreme fatigue
  63. Swollen glands/lymph nodes
  64. Unexplained fevers (high or low grade)
  65. Continual infections (sinus, kidney, eye, etc.)
  66. Symptoms seem to change, come and go
  67. Pain migrates (moves) to different body parts
  68. Early on, experienced a "flu-like" illness, after which you
      have not since felt well.
  69. Low body temperature
  70. Allergies/Chemical sensitivities
  71. Increased affect from alcohol and possible worse hangover



Wishing you the best,
Carol

[ryanbabs]

Your symptoms sound like possibly Kennedy's disease also, especially where you mention the pigeon breast. Also, it can effect your endocrine system, blood pressure, and cholesterol levels.  

Also check out Lyme's too...

[mpc2323]

I have the same symptoms except for breathing problems.  Its been three months of constant weakness. My muscles are stiff and it feels like Im carrying extra 5 pounds on each of my limbs.  I can still work out but it feels like my limbs are really weak but I can still do all the normal things. Is this a sign of lupus or ALS?  


PS: what test should I request?   Ive had my chest, hip and scrutum(I think ist scratum, the big bone just below my spinal..)
xray and everything is normal.  It feels like I have to be movng all the time to make the weakness go away.

[kristinMC]

You symptoms are identical to mine several years ago.  After numerous tests and eight years later they just found out I have lupus.  I too am still (and have been for 8 yrs) afraid I may have ALS.  My fallicitations and spasticity were thought to have been hemiplegic migraines.  I couldn't use my arm or leg, my throat and chest did it too.  It came and it went back and forth for a couple of years.  It has now turned into neuropathy and I'm losing sensitivity, muscle tone and mass in my legs, arms and neck. Anti-inflammatories help this when it started but the doctors didn't think it would help.  Now they just started giving them to me (Toradol), I needed it years ago.  Try to get to a neurologist soon.

Please check out the problems in your brain, i.e. confusion, memory loss, speaking difficulties, dizziness, eye problems, etc.  Especially if the symptoms are severe or constant.  I had these symptoms for years and then dementia two years ago.  I got better from the dementia but it turned out to be from having strokes, the above symptoms can be from mini-strokes or Transient Ischemic Attacks.  I only found this out after I recently had a stroke in my eye and lost part of my vision.  They tested my lupus anticoagulant.  You may want to suggest the doctors do this test. I also have raynaud's but I'm not sure how this affects the blood vessels in your head.

The doctors originally thought my brain problems were from my hypothyroid/Hashimoto's, anemia and/or infection.  But these have resolved and the problem still exists.

I hate tests.  But trust me get them to do as much as they can.  A MRI, MRA, EEG, ALL Lupus panels, Lymes, Mono-Epstein Barr Virus, thyroid panel, (liver panel/kidney panel - should these become possible problems) methylmalonic acid and anemia panels, vitamins, cholesterol, infections, etc. Also, NOTHING except my Mono and ANA came out positive for the first 6 years.  The past two years everything changed...a lot.  Apparently, it takes a while for Lupus to rear it's ugly head.  My cousin and great grandfather have/had Lupus also.

REMEMBER: Lupus is different in everyone.  Some get it severe others very mild, and the symptoms fluctuate.  One day here, 4 months there, etc.  and hits different areas at different times.  You may have one problem or you may have a dozen.  Know one knows.  Wish I did, that has been the worse thing with this, you have to keep vigilant about the symptoms at all times (without painic).  

I did not, repeat, did not take my problems seriously.  I thought maybe I was crazy or my body was just flipping out, AGAIN.  Some symptoms were okay and some could have killed me.  I never took my symptoms seriously because the hospital and doctor never took them seriously.  I'm a young female single mom.  To doctors this equates neurotic.  I'm certifiable NOT neurotic after 6-7 years of psychological tests and counseling to prove this to my doctor - and she is female.  It took two specialists to tell her I had lupus and strokes and she is still not treating me.  I obviously have to get a new doctor, but I just want you to know that this type of bias happens.  Don't let anyone try to deter you from getting answers and help.  Trust me, I don't want to believe it either. Exhausted, frustrated and sick you sometimes don't feel you are up to fighting the medical "professionals", but you may have to.  I have also had some great doctors that have saved my life time and again.  But I cannot stress enough how important a good general practioner (and rheumatologist)is.  

The only constant for me is that the disease is constantly changing and attacking different areas.  The more the attack the weaker and worse off I get.  It is generally not a progressive disease, but if it keeps hitting an area over and over again it stands to reason that the complications would become more severe in time.  Anything possibly affecting the brain (w/without weakness), heart, kidney or liver go to the ER or doctor immediately.  

I won't go into all of the things this disease has done to me.  We all have to deal with this differently and it affects all of us differently.  One day at a time.  I wish you the best.  Please e-mail me at kris_m_c***@**** if in any way I can help.

[foreverfriends1]

Am sad to hear what you are going thru as I have many of your symptoms and am seeing a rheumatologist 8th december. Antinuclear is positive. After many years of being told illness was in my mind and I was dx fibromyalgia - now the GP tells me the specialist had discussed this and this dx was not correct. i also have raised liver enzymes GammaGT has been static for 5 months at 138 (I dont drink or take medication that would affect liver) and I think Alt or Ast is elevated - brain fog has me not remembering which one.

I have had scans - all seemed OK but am only just seeing a liver specialist - special thoughts to all who like me are really struggling - foreverfriends1

[Rosetta]

Hi all

Im a 40 year old female.  For the last month and a half I have felt absolutely disgusting.  Night sweats, fevers, nausea, extremely tired, aches and pains, swollen glands.  Went to the doctors when I first wasnt well and he said it was a virus, go home and rest.  After several other visits they finally did b/ts and found that my liver function test was not right.  Slightly elevated.  Had a ultrasound and the liver was fine but my spleen was englarged.  Was sent home with further tests in a week.  B/ts were getting better but i was feeling worse.  In the last week my muscles in my arms and legs are so sore.  I may be lying down and they dont hurt but as soon as I move them they are really really painful..A few years ago they found that I had Hashimotos and the doctor at the time said I had very high ANA and that one day i might get a autoimmune disease like Lupus.  So the doctor I have now asked for a test for ANA and found thats its high.  Now I have to see a specialist and see what they say.  Im absolutely pertrified. What do you guys think?

[ColMcGee]

I am new to this site.  I came across your posting last night when I was looking up some info on this chronic arm pain and weakness that I keep having.  When I read your posting I realized that I could have written it myself about me, with the exception that I am 29 instead of 24.  I just wanted to let you know that there is sombody out there who really does understand exactly how you feel.

[CindiSue]

WOW! We are truely not alone. Long story short.. any letter here could be me. The most frustrating and yet compforting info came from an infectious disease PA. He said there is a "grey area" of vague symptoms for these autoimuune and rhumatic diseases of from 7 to 10 years. Eventually the pieces of the puzzle start to fit and it screams a Dx. Last week I had a TIA and after 5+ years of this misery, worry and pain I hope my "grey area" is screaming that it is finally diagnosable. So many possibilities but I think they were right with the lupus guess. But now it is effecting what?? Blood, viens,brain,circulation, etc. I just wish everyone luck and better health. My mantras are...This, too, shall pass....Worse things could happen...and my cup is half full. We must just keep plugging along, day to day to day!

[smate]

Have you ever checked into myasthenia gravis???  Many symptoms are the same

[lawgirl67]

For anyone who is positive for ANAs and have any other signs of lupus:  if you take any prescription, or non-prescription (over-the-counter or illegal) drugs, you may be experiencing an allergic reaction to the drug that will present itself as lupus.  If you are taking a prescription drug, you may want to do a search on the internet to see if the drug you are taking has been linked to lupus.  One place to start is www.rxlist.com or you can simply put both the name of your drug and the word "lupus" in the advanced search line "must contain all words" of google or yahoo. Another search combination is the name of your drug and the word "antinuclear".  My doctor was hopeful that my sudden onset of lupus-like symptoms and positive ANAs was the result of an allergic reaction to a medication I had been taking.  The literature for the drug even stated that one of the side effects is a lupus-like syndrome.

[bcnewman]

Hi,
I have lupus, overlapped with mixed connective tissue.  Recently my leg feels like I have a pinched nerve.  It has been about three weeks.  What concerns me most is starting last week my foot has been numb, along with pins and needles.  It feels like it is asleep.  My question, do you think this is related to a pinched nerve, lupus, or something entirly different?

[myproblem]

I have MCTD (Lupus and Scleroderma). The numbness and tingling you are feeling could be due to Vasculitis and/or Raynaud's. Both are common in MCTD/Lupus, and can cause any affected limbs to feel asleep for no apparent reason. Mine feel dead and useless sometimes. I experience it in the day sometimes, but more at night. Sometimes I feel like it is hard to lift that limb. It is worse when it has been cold, and my Raynaud's has been bad.