Discussions By Condition: I cannot get a diagnosis.

MS? other autoimmune? DESPERATE

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: kcsmom
  • April 14, 2008
  • 08:42 PM

Hello,
I will try to be as short as possible.

Oct. 05 woke to right hand swollen, painful, unable to move. Xray, blood
work normal. (no bug bite marks)

Jan. 06 woke to left hand swollen, painful, unable to move. No xray or blood work.

Spring 06 (can't recall specific date)
Woke to swollen, painful shoulder. Can't move or lift arm. Xray
shows mild calcification/tendonitis.
(had also experienced some similiar issues with my right middle finger-was often sore and difficult to grasp items and open things using that hand. I
believe this happened between the two hand swelling incidents and not reported to dr.)

Fall 06-Jan 07
Woke to what felt like I had burned my tongue. Within 3 days
my entire left side of face was entirely numb. Chin to top of head,
1/2 of nose, inner ear, and for a few weeks even part of the back
of my head. The numbness greatly improves by May. But I still have
tingling even now, it just varies in severity, but is mostly mild.

March 07 MRI shows one lesion in cerebellar peduncle. Active lesion
Lumbar puncture is normal. (I do remember -No imflammation)
does that mean no infections? Does that rule out all viruses? Just
bacterial right?

June Repeat MRI ---dr. says "improvement"? non-active

July 07 Woke to horrible veritigo. The first two hours are bad. The day gets a little better and next day is "managable". The third day is horrible
I had to be driven home from church b/c I it became so violent
(spinning and vomiting) My legs actually gave out when trying to
to the bathroom and people had to hold me up.

Aug 07 See MS specilist at UCSF. Physical exam is normal, although I do
have a slight hyper relex on left leg. Gives him my symptoms etc.
He believes we are probably dealing w/ MS, but suggest doing a
repeat MRI in Jan.

Jan 08 MRI shows 2 lesions. Dr. thinks original one might be viral related
and the new one (or one not seen previously) might be migraine
related. Since my symptoms haven't changed much, is not leaning
toward MS now. Wants to do Evoked Potentials and another MRI in
July.

Some other things if I may.....
Sometimes I get the sensation when I am driving that my fingers are HUGE and the steering wheel is as small as a piece of spaghetti. Maybe happens couple times a month at most. I also sometimes feel like my ankles and feet are swollen but they aren't and my right hand often feel ice cold, but husband tells me it's not colder than the left hand.
Also, my first MRI report noted "mild to moderate C5-6 disc protrusion displacing the cervical cord and producing spinal stenosis at this level. PRIOR FRACTURE OF THE C5 VERTEBRAE IS NOT EXCLUDED. I've never fractured anything that I know of!!! What's that about??? I was involved in a car accident (I don't even remember driving that whole block before the accident) and did not see a doctor and have had tingling in my mid to upper left side since then. Often had sore and tense neck and shoulder muscles. I sometimes have this popping or fluttering sound in my right ear at night when I lay on the pillow. I read that this is called stapedial myoclonus and is sometimes associated with autoimmunes diseases, such as MS. I think I have cognitive stuff, but husband tells me it's just an age thing. Thanks you for any input in ideas of possible diagnosis or what type of things we should be testing for. We've done the diabetes, lyme, lupus, b-12, thyroid and RA. I am really feeling desperate.
JAG

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7 Replies:

  • Sorry you are going through the MS work-up with no answers yet.It took me 8 years to get a solid answer- and it wasn't MS, despite numerous work-ups for it, including a spinal tap.Here are two diseases that i suspect even the MS expert may not know about yet. I have the first one:Hashimoto's Encephalopathy- it's a rare complication of autoimmune thyroiditis- and most HE patients have completely normal thyroid hormone levels. It is diagnosed by checking thyroid ANTIBODIES- which are normally NOT checked unless your TSH is off, first. Most neurologists have not heard of it, but it can come with migraines, produce spots on your MRI, and has a wide variety of neuro symptoms. Each case looks different and not everyone has all of the symptoms. HE responds well to steroids if caught early enough.Celiac Disease can also cause a lot of strange neuro symptoms, even in the absence of GI symptoms.Not sure if this will help or not, but if they can't pin down a diagnosis, and years go by, then it might be worthwhile to ask to get checked for the above. I have read that HE can look like MS, but is a little known of mimicker and gets overlooked.Best Wishes and hope you get some kind of definitive answer soon.
    Anonymous 42789 Replies Flag this Response
  • hi, i just had an MRI, they are looking for MS in me aswell. please let us know what is going on!
    Joint pain 19 Replies Flag this Response
  • I couldn't answer for all of your symtpoms, you may have more than one thing going on. One idea I do have is menopause or perimenopause. ....you said "age thing" so I am guessing you are "at that age"...I am too....48....symtpoms of menopause are wide and varied...it may be worth it for you to check out what kind of symptoms women complain about at this time of life....you may be surprised by what this list lincludes! Try www.power-surge.com/ This is a noncommercial site for women with a forum and great information for those of us going through perimenopause and menopause...great group....just take a look...not sure but I think worth a look anyway. Joan
    Joan5555 316 Replies Flag this Response
  • I am hoping you have found some answers by now--have you considered 1) scleroderma or 2) fibromyalgia?1) Any tendonitis or swelling in the hands, loss of dexterity, mobility in limbs, plus similar problems in feet AND mouth plus sore throat, acid reflux, mouth sores, receding gums could be primary/secondary symptoms caused by scleroderma. I have had sore ear canals on cold/windy days, though. Check with a rheumatologist for testing--especially ANA panel at least twice in short time. Find doctors with positive, inquisitive nature--who won't keep you on a merry-go-round of drugs. For swelling in my hands and later finger cracking, bleeding, my general practioner had me on months of NSAIDS for swelling, which did NOTHING. He thought I had carpal tunnel. I then saw a rheumatologist (on my own), who put me on VERY low dose of prednisone, 10mg for ONE MONTH only, then tapering off for a month. Swelling went away almost immediately. Carpal tunnel was secondary symptom--I am dealing with a "limited scleroderma" type issue.Tests are coming back negative for the condition at this point, so "official" diagnosis is not sclerorderma. If you have skin tightening these days, especially sensitive, slightly yellow patchy digits, with thin skin at fingertips prone to cracking/bleeding, plus mouth sores and tendonitis, these could be a strong indicators at this point. 2) My sister took a fall and hurt her spine, developed fibromyalgia. She sought positive, solution-oriented doctors after being told she'd never recover and getting fatalistic vibe/looks from negative nurses/staff. She is now cured. Good for her!In the meantime:Avoid salt, MSG, and processed foods, switch to tea, eat salmon/oily fish weekly or take fish oil daily (2mg is the anti-inflammatory dose), vitamin c, b-complex to boost adrenal function, food enzyme capsules with meals (health store). Try googling "anti-imflammatory diet."Fingerless neoprene circulation gloves from med supply store also helps control swelling as well as soft-sided overnight carpal tunnel braces (drug store) for sleeping. But talk to your relevant docs. Keep them talking to one another. Send faxes, drop off notes, leave messages--ask doc to call your other docs who need to be looped in on progress/new testing.Hello,I will try to be as short as possible. Oct. 05 woke to right hand swollen, painful, unable to move. Xray, blood work normal. (no bug bite marks)Jan. 06 woke to left hand swollen, painful, unable to move. No xray or blood work.Spring 06 (can't recall specific date)Woke to swollen, painful shoulder. Can't move or lift arm. Xray shows mild calcification/tendonitis. (had also experienced some similiar issues with my right middle finger-was often sore and difficult to grasp items and open things using that hand. I believe this happened between the two hand swelling incidents and not reported to dr.)Fall 06-Jan 07Woke to what felt like I had burned my tongue. Within 3 daysmy entire left side of face was entirely numb. Chin to top of head, 1/2 of nose, inner ear, and for a few weeks even part of the back of my head. The numbness greatly improves by May. But I still havetingling even now, it just varies in severity, but is mostly mild.March 07 MRI shows one lesion in cerebellar peduncle. Active lesionLumbar puncture is normal. (I do remember -No imflammation)does that mean no infections? Does that rule out all viruses? Justbacterial right?June Repeat MRI ---dr. says "improvement"? non-activeJuly 07 Woke to horrible veritigo. The first two hours are bad. The day gets a little better and next day is "managable". The third day is horrible I had to be driven home from church b/c I it became so violent(spinning and vomiting) My legs actually gave out when trying to to the bathroom and people had to hold me up.Aug 07 See MS specilist at UCSF. Physical exam is normal, although I do have a slight hyper relex on left leg. Gives him my symptoms etc.He believes we are probably dealing w/ MS, but suggest doing a repeat MRI in Jan.Jan 08 MRI shows 2 lesions. Dr. thinks original one might be viral relatedand the new one (or one not seen previously) might be migrainerelated. Since my symptoms haven't changed much, is not leaningtoward MS now. Wants to do Evoked Potentials and another MRI in July. Some other things if I may.....Sometimes I get the sensation when I am driving that my fingers are HUGE and the steering wheel is as small as a piece of spaghetti. Maybe happens couple times a month at most. I also sometimes feel like my ankles and feet are swollen but they aren't and my right hand often feel ice cold, but husband tells me it's not colder than the left hand. Also, my first MRI report noted "mild to moderate C5-6 disc protrusion displacing the cervical cord and producing spinal stenosis at this level. PRIOR FRACTURE OF THE C5 VERTEBRAE IS NOT EXCLUDED. I've never fractured anything that I know of!!! What's that about??? I was involved in a car accident (I don't even remember driving that whole block before the accident) and did not see a doctor and have had tingling in my mid to upper left side since then. Often had sore and tense neck and shoulder muscles. I sometimes have this popping or fluttering sound in my right ear at night when I lay on the pillow. I read that this is called stapedial myoclonus and is sometimes associated with autoimmunes diseases, such as MS. I think I have cognitive stuff, but husband tells me it's just an age thing. Thanks you for any input in ideas of possible diagnosis or what type of things we should be testing for. We've done the diabetes, lyme, lupus, b-12, thyroid and RA. I am really feeling desperate.JAG
    Anonymous 42789 Replies Flag this Response
  • Don't worry KCSMOM, as far as i think, i would say that your symptoms are bit similar, but at the same time it's different from MS. So, according to me i would say that you don't have MS. Just relax and Pray to God.God Bless. ^_^
    Anonymous 42789 Replies Flag this Response
  • Hi! I hope you've gotten an answer to all your questions! I have a very similar situation with doctors. I have a lot of things that just feel wrong--numbness/tingling in my right arm, chest wall pain (so bad I've been to the ER thinking it was my heart), and just general unexplained pain. Every single time I go to the doctor, all tests come back normal. It's very frustrating, but it's actually comforting to know there are other people out there that feel the same way. A few years ago, I had the same symptoms you had with the numbness in one side of my face-- it was bells palsy--paralysis of the face. My went about 99.9% away, my left eye still has a little trouble closing. I also had shingles-those are both generally conditions in older people--I was about 22 at the time, and the doctors found that odd. I actually think all in all, I just have some intolerance that I can't pinpoint, and doctors are too worried about getting me out the door to get the next patient in, that they are quick to throw a diagnosis at me. I'd love to hear what you ever found out if anything!!
    Anonymous 42789 Replies
    • January 20, 2011
    • 00:55 AM
    • 0
    Flag this Response
  • Have they tested you for Fibromyalgia? Fibromyalgia is an auto immune disease, and you have many of the symptoms. It can also cause cognitive problems. I wish you the best of luck.Hello,I will try to be as short as possible. Oct. 05 woke to right hand swollen, painful, unable to move. Xray, blood work normal. (no bug bite marks)Jan. 06 woke to left hand swollen, painful, unable to move. No xray or blood work.Spring 06 (can't recall specific date)Woke to swollen, painful shoulder. Can't move or lift arm. Xray shows mild calcification/tendonitis. (had also experienced some similiar issues with my right middle finger-was often sore and difficult to grasp items and open things using that hand. I believe this happened between the two hand swelling incidents and not reported to dr.)Fall 06-Jan 07Woke to what felt like I had burned my tongue. Within 3 daysmy entire left side of face was entirely numb. Chin to top of head, 1/2 of nose, inner ear, and for a few weeks even part of the back of my head. The numbness greatly improves by May. But I still havetingling even now, it just varies in severity, but is mostly mild.March 07 MRI shows one lesion in cerebellar peduncle. Active lesionLumbar puncture is normal. (I do remember -No imflammation)does that mean no infections? Does that rule out all viruses? Justbacterial right?June Repeat MRI ---dr. says "improvement"? non-activeJuly 07 Woke to horrible veritigo. The first two hours are bad. The day gets a little better and next day is "managable". The third day is horrible I had to be driven home from church b/c I it became so violent(spinning and vomiting) My legs actually gave out when trying to to the bathroom and people had to hold me up.Aug 07 See MS specilist at UCSF. Physical exam is normal, although I do have a slight hyper relex on left leg. Gives him my symptoms etc.He believes we are probably dealing w/ MS, but suggest doing a repeat MRI in Jan.Jan 08 MRI shows 2 lesions. Dr. thinks original one might be viral relatedand the new one (or one not seen previously) might be migrainerelated. Since my symptoms haven't changed much, is not leaningtoward MS now. Wants to do Evoked Potentials and another MRI in July. Some other things if I may.....Sometimes I get the sensation when I am driving that my fingers are HUGE and the steering wheel is as small as a piece of spaghetti. Maybe happens couple times a month at most. I also sometimes feel like my ankles and feet are swollen but they aren't and my right hand often feel ice cold, but husband tells me it's not colder than the left hand. Also, my first MRI report noted "mild to moderate C5-6 disc protrusion displacing the cervical cord and producing spinal stenosis at this level. PRIOR FRACTURE OF THE C5 VERTEBRAE IS NOT EXCLUDED. I've never fractured anything that I know of!!! What's that about??? I was involved in a car accident (I don't even remember driving that whole block before the accident) and did not see a doctor and have had tingling in my mid to upper left side since then. Often had sore and tense neck and shoulder muscles. I sometimes have this popping or fluttering sound in my right ear at night when I lay on the pillow. I read that this is called stapedial myoclonus and is sometimes associated with autoimmunes diseases, such as MS. I think I have cognitive stuff, but husband tells me it's just an age thing. Thanks you for any input in ideas of possible diagnosis or what type of things we should be testing for. We've done the diabetes, lyme, lupus, b-12, thyroid and RA. I am really feeling desperate.JAG
    Anonymous 42789 Replies Flag this Response
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