Regroup...

I need to regroup.  I need your assistance.  With as fast as people are coming to the board, I cannot keep up with everyone.  So I'd like to ask, maybe it would be easier for all of us, if we could list our "forum names;" "diagnosed or undiagnosed;" and if not MS, then what your doctors are saying that you have.  If you would like, also put your age if you feel comfortable doing so, so it can give us all an idea just by looking, what "age group" these symptoms and diagnosis are affecting.

I'll start....

Heather3418 (Heather) age 54......diagnosed-1995 ......MS

[6-paq]

6-paq (Pat) .... age 45 .... undiagnosed (Sx started in 2006) .... "possible MS"/sinus disease/lumbar stenosis

[Amyloo]

Amyloo-(Amy)  age 44 (till the 24th!)  diagnosed fibromyalgia and cervical facet syndrome but experiencing CNS symtoms (symptoms) for about 1 1/2 years.  Just started on this forum about two weeks ago.  Love you guys!

[pennst8r]

Pennst8r (Lisa) age 42 ... undiagnosed (Sx started in fall of '06) ... have had a few temporary diagnoses, all later ruled out. No diagnosis @ present (except spasticity and myoclonus, which are symptoms, not diagnoses)

[6-paq]

Hey, technically I'm still 44.  I'll be 45 on the 13th!!!   We're almost twins!!  :)

[Amyloo]

Yay!  We are both turkey 'chicks"!

[Heartshome]

Heartshome (Lisa) age 48 "probable MS" ...symptoms for eight years.

[pennst8r]

Have you noticed there's alot of Lisa's around here? Chris' too.

Penn

[frann]

Frann.... (Frann).... age 54... dagnosed with antiphopsholipid antibody syndrome and peripheral neuropathy... being worked up for MS... symptoms became debilitating since Oct. 2006.
Love you all.
God bless,
Frann

[mokibear]

Mokibear (Monika or Moki) age 43, undiagnosed with anything, symptoms for 4 years,last 2 the worst

[grannyhotwheels]

Grannyhotlegs.....(Carol)..... age 42.....diagnosed with MS in August of 2007
Have had symptoms since August of 2004.   You all are the best.  I love everyone of you and you all stay in my thoughts and prayers.

I'll be praying,
Carol

[kitten o]

KITTEN, AGE 48 DX IN MAY 2007
TREMORS ON LEFT SIDE MADE ME SEE
NERUO.

[TonkaSpirit]

Terrie......age 43.......diagnosed with post concussion syndrome, muscle spasms, migraines, and nerve something in my right arm.  

[BondyinOz]

BondyinOz (Mel)... age 24... DX with CFS and Endometriosis in 2003 (SX 2002-2004)... currently undiagnosed (SX April - current)... Dr says possible MS and possible Temporal Lobe Epilepsy... off to Neuro in exactly 3 weeks

[spankyandrex]

Sandra - undiagnosed.  1st Neuro Appt. 12/5.  I just turned 38 in Halloween.  Symptoms for years I believe, but could also be related to spine problems.  I won't go into my symptoms here - TOO LONG LOL!  Brain MRI essentially normal (I still question that- "Punctate lesions of high signal intensity", but whatever........ he said Neuro would talk to me about that) - I'm just waiting for neuro appt. and cervical/thoracic MRI, if I have lesions, they're there.  Ok, enough from me!  LOL!

[T-lynn]

T-Lynn----age 41----Officially Dx'd 1998---rediagnosed in December 2006.Now SPMS along with lumbar and lower thoracic radiculopathy and 2 failed back surgeries.Also a peripherial vesibular disease.

[essdipity]

[essdipity]

Sorry bout the keyboard slip.          ess, age 64 (grande dame or old hag!?!) abnormal MRI, not specific last round. Bunch of symptoms. Had update MRI, have apptmt with neuro Nov. 6. Wish me luck.

[floridamom2]

Kristin . . . . Age 37 (feels currently like 67 though!!!!)  . . .  .Dx with myotonia and peripheral neuropathy but no cause for why I have these Sx's -  waiting to see neuromuscular doctor at Shands at end of month.  
Thanks Heather!!  You guys are all so great!!

[mikemolly]

Mikemolly (Bethany)~~~~Age: 32~~~~~Started 2001: Undiagnosed

On the MRI "Orders" from yesterday (11/3/07), my doctor had this in the Diagnosis box:

"Demyelinating disease of central nervous system unspecified"

Bethany

[Super_sally888]

Super_sally888, 37, Australian female living in Manila.  Undiagnosed.

MS was suspected but the drs have given up for now because they can't find anything specific clinically that fits their definitions. Hypothyroid, pituitary adenoma.   Symptoms come and go more noticeably since the end of last year.

[uk2]

uk2-samantha aged 32    British. surrey. no dx as yet still under going tests. on off sx from after birth of second child in 2000, worse after a car accident in 2006 nov unable to work since may this year flare after flare of nerve pain and muscle weakness.

Hi bethany we are the same age!!

Prayers and love to you all.

[angela5674]

angela5674 (Angela), 30, "Probable MS," multilevel degenerative disc disease, mild stenosis, multilevel bilateral neural foraminal narrowing.  CNS symptoms since at least June 2007 (it's been difficult to know what's been CNS and what's been just back/neck issues).  I finally go to see the specialist on Friday so hopefully I'll have more news.

[Sandpuff]

Sandpuff (Michelle), 35, live in Midwest, undiagnosed, just went back to neuro for the first time in years because of symptoms that have returned/started after a couple years of feeling well (myoclonus, fatigue, night sweats, tingling, stiffness, etc.)

Just joined here and I think this is a great forum.  

[Heather3418]

Hopefully more will post....but gosh, what you all have posted so far, has been a tremendous help to me.  It helps me to know who you are and what you are dealing with.  And I thought "I" had it bad.  My gosh, some of the things that all of you are going through gives me chills up and down my spine.

This has really been interesting and I thank you for responding.  I'll wait to see if there are a few more posts, then I will print this out and keep it by my computer.  It will be helpful to me when I am commenting on some of the posts, knowing what you each are going through..on your way to a diagnosis of SOMETHING.  My gosh you all are brave, brave people and I highly respect what each and every one of you are going through.

Thanks for all your input.. It's SO helpful.  Especially with my short-term memory problems.  This list will really come in handy.  Heather

[Heartshome]

Thanks Heather, No worries, some days it feels like I have no memory left at all! :)

[Momzilla]

Momzilla

Age 43, undiagnosed.   Have been having numerous symptoms which seem to indicate some sort of central nervous sytem trouble, including periodic paralysis of my legs, foot drop and Babinski's sign.  Have seen  many specialists, including neurologists, endocrinologist and even a psychiatrist to make things fun!  Neuro is suspecting Chronic Fatigue Syndrome.  I have no lesions on MRI.  Dagnabbit!  I think they're just shy.....

Z*

[moeck]

Moeck  diagnosed with CSM, one of the great MS mimics, alos have, if anyone has questions, autoimmune thyroidiaits and sero-negative imflammatory arhtritis.  Post-op anterior cervical discetomy, decompression and fusion, bilateral CTS releases.
Age 51, female, two grown children, hysterectomy in 2003

[Wobbly]

I'm new to the forum...54 years old female.. probable MS.. symptoms since 1998..got worst in 2005 and still getting worse.  The Dr are still not sure what is wrong and I'm still having tests?  My walking has gotten bad at times..legs just get numb and weak...sore too??  I think this forum is great and glad to be here..take are all..

[EL18]

EL18 - Em from UK.  31 years old.  Undiagnosed. Been told I have an organic neuroligical disease...they just don't know what at the moment.  Referred to MS Specialist. Lesions found in spine but not brain. Problem found during physical exam. Elevated Protein in CSF but no O-Bands. MRI's to be repeated in December. Things are really improving for me at the moment and I hope to return to work in 2 weeks (gradual phased return).

[needanswers54]

Needanswer54, (Torey) 51female, diagnosed with fibromyalgia and possibly lupus and then fibro.  Now that is deleted and given diagnosis of MS (spinal lesions with "normal?" brain lesions (WMLs for age and migraines) with severe almost daily migraine, DDD, herniated/propulsed disks, bilateral carpal tunnel, some mitral valve prolapse, yaddiyaddiyadda....etc.  Paraprofession in hospital and also did prior biomedical, genetic, and nucleic acid replication testing and research.  Also did chemical quality assurance and development with some hazardous materials.  Normal MRIs until year after chronic and acute chemical exposures.  Disabled due to health problems.

[SusanLK]

I just joined the forum a few days ago.   Susan... age 46....undiagnosed... Mri shows multiple lesions in the cerebral periventricular/subcortical including the septal-callosal interface...lost my sense of smell in August...experiencing muscle aches, fatigue, mental slowness,etc...(I have bipolar 2 disorder, too)...I'm seeing a neurologist for the first time on the 8th.  Thanks for everyone's help and support.

[monotreme]

monotreme (Craig)  age 50.  Severe spine osteoporosis with 40 percent of spine gone.  Also Cushings syndrome.  Severe leg weakness starting in 2006, with numbness and paresthesias.  One brain lesion perpendicular to the ventricles in parietal region, along with cerebral atrophy.  Thanks!!

[Quixotic1]

Quix - age 55, Dx'd RRMS in 3/07 after 2 and 1/2 years of symptoms.  Presented with leg weakness and spasticity.  MRI + 1 lesion in frontal lobe, 6 in brainstem and spine.  + LP, disabled due to Autoimmune Inner Ear Disease (Severe, intractable vertigo) 2001.  MS is in addition to that.  Live in Washougal, WA.  Former pediatrician, now acting as Den Mother to Forum.

Great idea Heather, I'm gonna give it until it slides off the second page then print it out for quicker reference than my notebook!  Quix

[help110607]

needhelp11607 (Lisa)43 yo female no dx experiencing sx since july 07  just joined group tonight, i've read a lot of the post.  glad to be a part of this group

[maydas2002]

Mayda - Age 32 - 3 boys!- Possible MS - still getting tests MRI delayed till Dec 21st/07. Symptoms for 5 years. started w/Optic neuritis then facial/arm paresthesia for last 4 years. This year more muscular, spasms(bad ones!), twitchings, etc.,vertigo, etc. Very glad to be here and meet all of you!

Mayda just a joke ( Mayda Serrano abbrev. MS,  how convinient! ja!)

[doni54]

Not quite 53 (11/14), undx. No health ins so haven't had any tests as of yet. GP did blood tests and prescribed B12 injections, no improvement.

Symptoms started years ago (maybe 12-15); painful muscle spasms everywhere, suspected ON-with problems with both eyes including bad muscle spasms, word drop, brain fuzz, heat intolerance-can't even use hair dryer, extreme fatigue, depression, arm and leg weakness, dizziness, coordination problems-run in to door ways and trip on uneven ground daily.

2007 worse year yet, now most symtoms (symptoms) around everyday.  Been on this forum since July.

Love all of you and this forum, don't know what I would do without all of you.  Welcome to all our new family members.

[Siddy1]

Siddy1 - age 67.  Diagnosed very quickly in 9/2005 with RRMS and changed to SPMS 12/2005. Initially I presented with left sided weakness thought to be ischemic in nature but after thorough testing I was diagnosed with SPMS based on the results of two oligoclonal bands in CSF and two lesions on brain. All other extensive tests were negative. My dx was changed to SPMS because they think I had a clinically isolated syndrome at age 21 which lasted 6 weeks and which was (mis) diagnosed with Polio at the time.  

After this I had a long (44 years) period of  good health until 2005.  Some minor things plus back problems started in 1998 but hip replacement in 2004 finally resolved the back pain.  My symptoms are basically motory but I do have TMJ, myoclonic jerks, split-second distorted vision, and BVVP on occasions. Fatigue is always a factor.

I opted out of taking Rebif  but have started back on my Low Dose Naltrexone (LDN) 3 mg.  

Present status: use a cane when very tired. Left side still weak.  Antalgic gait with foot drop and left arm weakness. My left leg is being fitted with an AFO  on Monday.

Possible family autoimmune link:       Brother with Ankylosing Spondilitis
                                                      Mother with spine problems and arthritis

Been on this forum since June 2007.  I don't post much any more but I do drop in from time to time.

[Michela11]

Michela11 (Michelle) age 43 (almost 44 dammit).
Diagnosed with MS November 8 2007.
Spinal MRI - 12 lesions.
About to finish 4 day course of intravenous methylprednisolone.
Panadeine Forte making symptoms tolerable.
Brain MRI - to be done Nov 12
Visual Evoked Responses - to be done Nov 22
Bizarre seemingly unrelated symptoms across 2007.
Main symptoms - burning front of legs (nothing in back or down spine), also tops and soles of feet, Lhermitte's still makes knees buckle.
Took initial action August 2007.

[Momzilla]

I'll second that dammit, Michela!  I'm 43, too!  Welcome to the forum.  Sorry about your diagnosis.  Good luck with the rest of your IV meds.  I hope they help you feel better!  Let us know how your testing goes, too.

Momzilla*

[cdvzfr]

cdvzfr - RaeAnne, I am 34, female, Sx in 2005 started with Optical Viusal Disturbances, 1 Lesion found around left eye. All others tests Normal  DX THEY DON'T KNOW WHAT THE H... IS WRONG WITH ME! Undiagnosised. They keep thinking Possible MS, then Stress Aniexty,

Then muscle ache, tingles , hot water being poured down me and heavy left leg and foot, dragged for days, Dx then Possible MS, then Stress Aniexty,

Tingles in face and burning ache in face, numb feeling in back and twitching eye, ringing in ears, floaters, with white flashes of lights, white ghostly auras around things, Dx Stress Aniexty, Go see psyciatrist.

Now, Numbness in hands and left foot, burning front of legs (like shine splints) shaking hands so ooo bad, Dx Carpal Tunnel, more tests to come.

RAE

[kate1969]

Kate1969 38yo, still in the "possible" MS phase. Lesions found in brain and cervical spine last month. Lumbar puncture results indicative of MS. Working on second opinion scheduled next month before starting Meds.  Only symptom I am currently aware of is tingly and slight but noticable loss of sensation in right foot-upper half of bottom. Kinda scared and a little angry.  Many blessings to everyone.

[doni54]

Bump!

[mindy01]

melinda or mindy 36,undiagnosed.lesion(3) found on the frountal lobe in the periventricular white matter,vibrations feeling,twitching in whole body,weakness in the legs,facial pain,blurry eyes.virtigo.and does anyone know what pressur at the top of my head could be from?

[cjacks]

Jo 57 my 1st. time here    dx's Hep C '87 , degenerative disc disease '80s,  mercury poisoning '06,  trigemenal neuropathy '07    Started having facial numbness (one episode of pain) and tingling/buzzing this summer. Didnt get scared until buzzing and weakness in lower leg. Now arms and legs involved .. I have a mild hum in my body.. dizzy and headaches  .. Always wierdness in my eyes, numb and tired, along with fatigue(2yrs)       Neuologist 11-28..   and so the adventure begins..           I am woman ..  I am strong  (my new mantra)

[nette573]

nette573 - Lynette - 50, undiagnosed Ive been dealing with BPPV lately but have been having problems seems like for years.  migraines, right side numbness, face numb and its drooping- right hand numb and weak - right foot numb and weak somethimes cant hardly walk.  My doctor thought I had a stoke but my last neuro said no- fixing to go to another neuro.  Waiting for my appt.  my mri without contrast showed - two tiny foci of increased signal intensity of FLAIR  images demonstrated within the subcortical white matter of the right parietal lobe.  Ive also been dropping things for years especially my right hand.  Ive been having fatigue for years.  Ive been having problems putting a sentence together - cant remember words good.  Im hoping my next neuro will order a mri with contrast. Have been having the numness of rightside for 6 months.  Prayers to ya

[Siddy1]

Ola!   Correction: I think you all knew I meant BPPV but I put BVVP (duh) which is a variation on the same theme and indicative of my state of mind half the time!

[SuStark]

sustark - Susan - age 50, diagnosed 11/3/2007 (one week after my 50th birthday), relapsing/remitting MS  Double vision and vertigo appeared on September 30 and voila! Now I know what was wrong.

[Melissa072]

Melissa 35
Been having ongoing ms symptons since April.
Clear brain and whole spine mri done July, no contrast.
Had 4/5 weeks face pain, tingling, hand, feet, groin tingling, altered sensation up arms, legs.
Now left with numbish feel to face, numbish feet, weird sensation up legs, lightheadedness particulary when looking up, down or to side (3 months), had twitching all over for 2 weeks, burning spots feet. Been told stress, post viral and not too worry about symptons, neuro told me it's not ms but is sending me for repeated mri of brain and whole spine Dec and says she will bet me it's the same as before, so maybe I should take her up on that offer. So apart from feeling like a fool since April with these symptons you guys are the only ones who seem to listen and offer any support and advice for whats happening to me, the dr's certainly don't. So thanks everyone, much appreciated.
p.s. did anyone read my post on is 5 months between mri's too close? Warm regards everyone,Melissa from sunny Queensland in Australia

[6-paq]

Bumpity bump since I never printed this out and I'm getting all confused again...   :-)

[mae1]

Mae1 (april)  age 36,  Dx. 2006,  MS.

[Rena705]

Rena705...Age 45, First diagnosis 1993...in remission until Feb. 2007, Second diagnosis Nov. 28, 2007 MS ...Also diagnosed with Paratrigeminal Neuralgia in Feb. 2007.

[CarolynV]

CarolynV Age 38 undiagnosed  clear MRI of brain/neck with and without contrast...symptoms started a eight weeks ago...pain/twitching in calves; arm, back, stomach muscle pain, buzzing, burning, itching sensations

[Heather3418]

I hope all the newcomers will post to this thread to let us know more about them...Thank you!

[mooers777]

mooers777  Age 26  Undiagnosed.
Symptoms include, Tremors/seizures docs unsure of which, major numbness which has caused many burns, Migraines, Dizziness, Feelings of beening drunk even though I do not drink at all, Feelings of faintness, At times unable to move legs causing my husband to have to carry me into the house, Moments of staring of into "space", Mood swings maybe due to meds, Tingling on my head that travels elsewhere on my body. Musle pain.Many many more symptoms. But, I will stop here to leave room for others.
Thank you!

[mooers777]

Forgot to say I am a female!

[nanadee]

nanadee age 47 diagnosed 2004

Found this a month ago & love having somwhere to go !! People who understand or even just reading & learning new things.

[kitten o]

KITT, AGE ALMOST 49, DX MAY 2007
THANK GOD FOR ALL OF YOU.

[Akcowboy]

  Cowboy, age 46 real soon lol undiagnosed but working on it, living in Alaska and love hunting for bears but finding it harder to do now and riding my horses with my kids

  Cowboy up

[doublevision1]

doublevision1(db1): just turned 40; MS sx since May 2006; dx RRMS Oct 2007; joined this forum Jan 2007

[Super_sally888]

Sally, 37 years old, female, Caucasian, Australian living in Philippines.

Diagnosed: Hypothryoid, Pituitary adenoma, PCOS.

No diagnosis or explanation for fatigue, burning and tingling sensations, tremor, visual: flashing lights and possibly some mild vision distortion, hearing loss (need to check if this has progressed).

[speechgeek]

Speechgeek (rebeccah) age 38 peripheral neuropathy as of 1/11/08.. in my book undiagnosed

Symptoms started 9/07 and maybe a repeat of symptoms from7/04.

Welcome back Heather!

Rebeccah

[syndismilez]

Syndismilez... female.. "probable MS" although last neuro Dx MS but waiting on second opinion????  Symptoms since 05.  Urine retention, twitching, muscle cramps, fumble fingers, cognative issues, gait disturbances causing back and hip pain, pins and needles....etc!  Haha
Syn

[Eliza3]

Eliza3 (Elizabeth) 47 DX 2007
Had 3 mri's done in over 10 years first 2 neg, the 3rd positive for MS. Had symptoms since I was 27. (I was told at every flare up that it was diabetes and depression) Every few years MS comes and leaves a bad taste. This last one has never gone away just getting worse.
I'm very shy!!
Welcome back Heather! Thanks for this great idea
Eliza

[SOONERMOM]

SOONERMOM (Stacey) age 39   undiagnosed

growing numbness/paresthesias head to foot on left side since 10/07, multiple white matter lesions, saw MS specialist this week--said only small chance it is MS.  He found 2 abnormal neuro tests--left reflex is hyper and something w/my eyes and the color red--he is sending me for eye exam to rule out susac's--thinks my problem may be vascular

Stacey

[tamhart9]

Tammy....... age 38...... undiagnosed jan. 08........ symptoms since 2001........mri not clear enough.......... neuro-opthamologist says "probably MS.............. first neurologist appt. Feb.5,2008........first LP January 29th.... Symptoms to long to list and some are off and on

[syndismilez]

wooops.  I forgot my age!!!!  Haha
36 and from Florida.

[cherby]

No Problem girlfriend!
wainting for dx
Cherby

[ELT]

Hi, Erica here, almost 43, undiagnosed, sx for a few years, in varying degrees at different times, told possible ms, no lesions, though.

sx, kind of, well, short version, lol:

fatigue, sensory issues, weakness, visual disturbances, bowel/bladder issues, incoordination, balance issues, cognitive - big time lol.  

a 'kind' psychiatrist who met me for a 30 minute appt and read that I had been tested lots, with no diagnostic outcome, decided I must have some somatization disorder, hmmm.
Erica

[kimstvr]

Hello, Kim here. I am 38 and very recently dx RRMS. Staring avonex this next week.

[Bellabella]

BUMP BUMP BUMP...................
Took me ages to find this. Anyone had any radical changes or  anyone not on here that wants to add their brief history. It really helps to keep it straight when reading posts.

[Sonaya]

I think I joined after seeing this post.  Good idea to bump Bellabella.

Ok  HI Im Sonaya, 38 from Australia undiagnosed 5mths since had initial "incident"  Sept 07. Will try to keep this brief. Very Sudden onset of stroke like symptoms. Prior to this, healthy, happy, loads of energy.  Only way can describe it was like something switched in my head, loss of hearing in one ear, blurred vision, speech problems, inability to think straight, weekness in legs, dizzyness, worst headache of my life (no history of migraines ever). All happened like a flick of a switch totally out of the blue. Suspected stroke, brain hem, meningitis. Test ruled out this. Mentioned Vestibular Inner ear problem, shingles,  MS, Lupus, Spinal Stenosis/disc compression.  OVer the months progressive symptoms of more blurred vision, motion sickness/vertigo, although not so much dizzy spells, just some triggers that can cause it,  facial numbness, tingling, pins & needle sensations, extreme muscle aches and pains and weakness. Loss of balance like Im going to fall over or my legs are going to give way. Stiff Neck,head pressure, eye pressure, ear & nose pressure like liquid filling up.  Clear liquid running out of nostril like CSF leak? Heat /burning sensations, chest pain (like angina)profuse sweating,  memory problems, just cant think like I use to, stare into space spells, extreme fatigue. Muscle spasms, twitching feet, legs, arms, face, eye, cheek, twitching with recent uncontrollable jerking mainly leg and arms, triggers similar to epilepsy seizures but not consistent. Unofficial diagnosis is Familial Hemiplegic Migraine with aura, although most of the time I dont get headaches, just the auras, yet sometimes I do.  The very recent symptom is palpitations in sleep with shortness of breathe. . Hot days seem to make muscle twitching worse, yet cold days make muscles ache & pain worse. So far all tests have shown nothing. MRI without contrast brain and spinal, LP CT Head, CT Sinus, Dopplar carotid arteries, ecg, heart stress test, bloods. Not seen neuro yet. Think that covers where Im at.

[speechgeek]

speechgeek (Rebeccah) age 38 undiagnosed currently being treated for lyme.

Symptoms began November 2007. Axonal peripherial neuropathy . visual disturbances, vertigo severe muscle fatigue in arms and legs. Terrible balance so on and so forth

I have a time line but it takes up too much space.

Rebeccah

[spastic]

Spastic, aka spazie legs (ada), 32, live in Iowa been spastic since July not dx with ms yet but dr's suspect.

[Jenn0030]

Jenn AKA Jenn0030

Diagnosed with Epilepsy, TN and ON. I am being treated for a migraine varient and Myoclonus.  I have seen two Doctors one thinks MS, one thinks no MS.  I go for my MS spec. evalutaion in two weeks.  I hope to finally get some answers.

Jenn

[risnerrose]

Female, Age 43
Diagnosis:  Diagnosed July 2007 by neuro, "Undiagnosed" August 2007 by MS specialist
MRI:  Brain lesions, no spinal lesions
CFS: Elevated IgG, no O-bands
Symptoms:  tingling, numbness, cognitive, episodes of sudden right-side weakness

[Nerve_Wrecked]

Nerve_Wrecked: female 33
Undiagnosed, "probable MS" by 1 PCP, and "I have NO idea" by another PCP.
Clear MRI, waiting to do an LP (waiting for appointment date)
Weird Symptoms since Nov'05

[biowham]

Emily, female, 39. Biologist. Mother of three boys. Presented in October 2007 with foot numbness and paresthesia, bilateral upper extremity parasthesias. Hx of RSD in left hand. Thought it was CTS in right hand. Electrophys negative for CTS. Grandmother has had PPMS since 1950s. Heat intolerant, +rombergs, lower extremity hyperreflexia. Member of the "little mouse" club. Vertigo/dizziness, balance issues. Fell down stairs. Extremely weak in right leg. Weak right hand.

MRI: Several foci, three of which are >/= 3mm or more. Spine was clear on1.5T. No nerve entrapment. Compression at T spine. LP was negative, all normal. Blood all normal--no B12 prob, lupus, etc.

Two neuros, two very conflicting opinions. I have no dx of any kind because I can't even get two doctors to agree on where I'm hyperreflexive. First doc drylabbed part of the report. Second doc wants me to have half of a conversion disorder and half of organic etiology to fit his ideas of what's causing my problems. Am seeking "third" opinion (or second opinion on these two conflicting opinions, as my PCP says) next week.

E

[Barbie51]

Barbie51...51 year old female, diagnosed 2002, MS, neurogenic bladder, fatigue, cognitive issues

Bless both you, Heather and Quix keeping track of all of us, don't know how you do it.  Thanks!

[TiredPT]

TiredPT (Teresa) . . . . 33 y/o female, Virginia resident.  Momma of 2 beautiful children and wife of an amazing man.  Physical Therapist by trade and I love my job but all this nonsense has seriously affected my ability to work at times.

No official diagnosis other than chronic high EBV titers and reactivation -- definite strange symptoms onset after the birth of my first child in 2002.  Been to a neuro last year that dismisssed me and my symptoms when MRI and LP were clear for brain tumor and pseudotumor -- went back to look at reports and seems all they looked at with the CSF was for malignancy, protein, and glucose.  Changed PCPs and new doc is sending me to a new neurologist in April.  Just playing the waiting game now.

[LATW]

LA(Lee Ann) 44 I am a full time at home mom of 7 children.  Our two older daughters are biological children ages 24 (married 3 year and has a one month old baby girl) and a 22 year old college student.  Five adopted at birth.  11 year old health son.  11 daughter, 9 son, 5 daugher, 2 son.......all whom have Down Syndrome.  My husband and I have been married almost 26 years.
We also have two pomeranians, one rat terrier and one hampster! My daughter has a cat that is not allowed in the house and has to stay at her boy friends house because we think it is possesed!! Evil cat!

I have had health problems as long as I can remember. I always wondered why others thought exercise was so great and how they felt so good after working out.  All I got from a workout was blurred vision, a vibrating body, and itchy hands and feet!!  

I had mono when I was 18 and again when I was 27. My doctor suspected lupus or ms when I was in my late 30's.  In the past 5 years I developed Trigeminal Neuralgia and then Optic Neuritis.  Most recenly my reflexes have become abnormal.  I was diagnosed with MS on Feb 13 2008.  I started medication for Trigeminal Neuralgia and I am feeling better. I am due to start Avonex this week.  

And that you for doing this!  I was actually wondering if we could all include in our signature line if we are dx'd with something everytime we post. I get confused and am not sure how to respond sometimes. It would help to know if there is a dx or not.  


Lee Ann

[dowma]

Dowma (Mary Beth)
Dx with seizures, no MS dx (yet) 42, female, NY.
doctor says "Neuro Autoimmune disease" currently being treated with IVIG monthly and just started Keppra.  MRI 2 brain lesions, spinal tap negative, labs negative, PET scan with hypometabolism.  VEEG with seizures and abnormal neuropsych. eval.  
Love the forum!!!
Mary Beth

[Ley5792]

Ley5792.....age 24.........un-diagnosed.......doc's believe MS.

[cjacks]

bump

[nikki861]

Nikki861......(Beth) 45 yr old female.........Louisiana..........undx at this time
Sx since 2001
Was told yesterday I have partial paralasis of left leg. Am having spinal MRI done on Friday.Has not ruled out MS.  I am very thankful for this forum and all of you here!

Blessings,
Beth

[MCBCON]

MCBCON aka. McBacon

Male, at least the last time I checked.


47 diagnosed with MS sometime around 2003,2004  probably had it much much longer though

dx mostly because of ON, but other symptom and lesions on MRI

Michael

[Nerve_Wrecked]

Nerve_Wrecked, female, age 33.

Undiagnosed (doctor stumped)
Symptoms started Nov'05 (although some odd things before that).


Christine

[sllowe]

sllowe (SL)........age 38.......diagnosed 2007......MS.

[wingnut19]

wingnut19 (Tammy)....39 years old.
Was given dx in March by GP and ER doc, but Neuro disagrees. Going to MS Clinic in May.
Symptoms started approx a year ago.....(now realizing it's been much longer)

[Waterboy44]

alamosa, age 35
ON dx 2002
MS dx 2003
Just gave blood today to test thyroid; I think there is a problem there too.

[jensequitur]

Jensequitur (Jen) age 37 (eek!) DX in March 2007 with RRMS

[kitten o]

KITT    AGE 49  DX  MS  APRIL 18TH 2007 WITH RRMS
DX WITH ON MAY 2  2007

[CtResident]

CtResident   Suzanne  Age 46

Undx'd  
Hyper reflexes, left side numbness, paresthesias, blurred vision
Normal MRI's and EP's
Low ferritin, trying iron treatments for 3 weeks

[Fluffysmom]

Fluffysmom

Kathy, 45, undx

My tremors brought me to a brain MRI that showed multiple lesions "not totally typical of MS" (new neuro), but combined with symptoms and history, possible MS.

I discovered this past week that I do indeed have heat intolerance; the high 70's and low 80's wrung me out like an old rag.  (In the past I walked up and down bleachers in 100 degree weather for fun and exercise)  I also cramp up terribly when cold, especially my feet and calves.  I have dizzy spells, fatigue, fatigue after exertion, fatigue when well rested. :o)  My vision is sometimes blurry and my eyes feel gummy even when I use Bion Tears.  Occipital headaches, sinus pain when CT shows nothing, pain in face that I thought was a tooth needing a root canal, but X-ray showed it was fine.  Hypersensitivity on tops of feet and front of ankles.

I have been diagnosed with interstitial cystitis, SI joint hypermobility and arthritis, degenerative joint disease throughout my thoracic and lumbar spine (just a touch in cervical), an old compression fracture of T7, lumbar facet arthropothy, L4 herniation and radiculopathy, fibromyalgia, restless leg syndrome, mild ulnar neuropathy, LFCN entrapment, knees that have little cartilage left (3 ACL reconstructions), occasional migraines, mostly menstrual, if I've left anything out, you don't need to hear about it!

[spastic]

Spastic aka Ada and Spazie Legs, age 31 live in Iowa, Official dx of AOSD, have had a lot of bumps in the road to get that dx. I have two great kids and I am married.  My passion in life used to be animal rescue.  One day I will be back at doing that.  I have had my profound symptoms since July 07,  Found my forum family in February when dr's suspected MS.  This forum is my home, it is my cuddly place where I go in cyber space to just be myself.  

[humming4u]

humming4u,or cathy
51 years old, fibromyalgia for 14 years, 2005 head,face pain,fatigue(more then with fibro)
to neros, Mri=white matter, mom had ms, doctor said possiable /proable, clear sp,2ond mri=same,say nay for ms,.. for now,.. treating symptoms,and scared of neros.

[Want to feel well!!!]

Want to feel well!!! (aka Wanna)  

48 yrs old...undiagnosed (but NOT MS,Fibro,CFS,Lyme)

[amas]

Anamaria,  42, Married w/3 children, Undx

Diagnosed with Hypothyroid 12/06 and Hypertension 4/07.  MRA 05/07 and MRI 11/07 showed areas of concern for MS - Done due to constant dizziness, unbalance and leftside numbness.  After researching, I  believe to have had symptoms for over a decade.  Awaiting LP to be performed.

[julia111]

julia111 - Julia (age 40)

1995: Diagnosed w/ Fibromyalgia

2007 September:  Presented w/ neurological symptoms (numbness, weakness, stiffness in legs, increased pain & fatigue among others)

2008:  Re-diagnosed w/ fibromyalgia

Also diagnosed w/ Gluten Sensitivity - symptoms can mimic MS

[hbananas]

hbananas (Holly) 53, undiagnosed, One brain and 3 spinal lesions I know of, negative LP and VEP.  Symptoms are tingling and numbness in hands and feet, and side of torso, and I get weak and dizzy in the heat.

[needanswers54]

Needanswers54:

Diagnosed MS in October, 2007.  Neuro states have had at least since 2001 or before.  Also diagnosed prior with fibromyalgia, multiple level degenerative disk disease, bilateral carpal tunnerl, weakness of peroneal nerve, disability of right arm and ankle, and others.  Possibly now have precancerous or cancerous situation rearing its ugly head.  But, my gut feeling is that it is just some more weird inflammatory with possible adjunct hormonal variation of some sort going on.  Who knows?  Lots of stress lately.  Tremors and rubberband and dizziness and some short-term memory problems and increased weakness, etc. feelings since pneumonia in December when I fell down the stairs and ripped the tendons in my foot and ankle.  Now, my pulse has gone from 59 with normal readings after walking to 182 after 3.5-4 minutes on the treadmill at half the speed.  Physician feels that my heart has been overwhelmed and could not compensate for the added security stress with the theft(s) and threats, particularly since my having pneumonia.  He basically said that he felt that I was just really worn down and my heart tried to compensate and became overhwhelmed.  My QT has now lengthened to a concern level and I am being holter-monitored.  No clearance for surgery for at least two months.

The other neuro states that there is no way that anyone could have all these problems.  S#@#@ him!  I have the MRIs and ECGs and lab work, and radiographs to show it.  I will never go back to him.  Sorry that this is so long.  God help us all keep out sanity and patience.  Lots of ear ringing, especially with migraines---unrelenting migraines since 1991 when my ANA went high.  Almost daily headaches, now.  Need morphine at times to relieve.  Have tried almost every preventative and been in drug studies for prevention and help without much avail.

[mom9335]

mom9335     39 year old son dx with MS dec, 2007.  

[santana8]

Santana8 (Carla ), 41, Tennessee
DX: ADEM or possible MS
10 -brain lesions, visual field defect, left inferior harm quadrant, blepharitis, dry eye and meibomian gland disfunction
LP-Negative
VEP- possitive
Sudden onset visual disturbance in April, 2006
Repeat brain MRI's every six months, All no change, no new lesions, no enhancement
Currently working on ruling out other possible dx's

[slightlybroken]

slightlybroken    34 years old (35 on the 24th)  un-DX

I have 2-3mm lesions in the white matter of my brain. Neuro says they're non-specific. Neuro also noted "something" in my cervical spine but he says too small to see. They were done on a 1.3T machine. I'm going to a better doc and a better machine this month. (I'm crossing my fingers).

My sx started in to full gear last year (8/2007-curren)t but I could have had an isolated incident back in 12/1998 when I woke up with slurred speach, no gag reflex on one side, weakness, numbness, confusion, and one eye was "sluggish" to react to the light. My main complaints now are, muscle spasms, left sided weakness, numbness, double vision, shaky legs, burning sensations, heat sensitivity. I have hyper- reflexes on the left side.

3/2008 dx with eye muscle weakness causing my double vision.

[challengecase]

challengecase....55yrs/female/undiagnosed

dx of MS in 2002.  Dx taken away in 2004 along with all meds.  Brain scan of 2/20/2008 shows more and larger lesions that are clustering in the periventricular area.  Over 20 brain lesions.  No spinal lesions.  

[marez]

Marez undx 45, probable MS, but symt for  16 years , previous dx including lupus, RA, Fibro, nutcase and now back to MS will hear what they say the 15th.
My luck it will be nutcase!!

hugs wow there are a ton of you out there!

Mary

[Sam1106]

Sam1106- Sammy 22 (am I the youngest on here?) England  Diagnosed 2006.

Started having symptoms 4 months after my daughter was born in 05, I have had 7 relapses since so now I'm on Rebif which seems to be helping. I still go to work 6 days a week I don't like it to get me down. My neuro has strongly advised me not to have any more children, I was pretty gutted but now I have just accepted it.

Sammy

[Sam1106]

Forgot to say dx was RRMS. The thing I hate most about having this disease is that if people cant see it they dont believe it!

Sammy

[Deb61]

Deb61-   Deb-   46 years old

Diagnosed late January or early February, 2008 with RRMS.  

Started Copaxone almost a month ago.  

Have a sister with MS that's on Tysabri.

Deb

[smittygirl]

smittygirl Sue  50,   Still going thru testing..    Reactive Arthritis and Ankoylosing Spondylitis since 04'    Doc also looking at possible Myasthenia Gravis as well as the MS.     Sonya was the very first person to answer me, hope you're doing ok Sonya!  Love talking to all of you, thanks for your friendship and compassion.


Sue

[tanky]

tanky - Niki, 31 - diagnosed with MS in Nov. 2007

[gollie]

Hi Heather:

Hope all is well!!

Gollie, 49  MS dx 2/2008 DMD-Copaxone

[trueblue06]

Undiagnosed, multiple symptoms out of control 2005
MRI's x2 show multiple scattered lesions
2nd MRI unchanged from the 1st
All other tests for everything else negative
LP normal, VEP normal, Nerve test normal
Neuro won't commit to diagnosis keeps changing his mind
Yes it is, not it isn't, yes it is, no it isn't........................
2nd opinion " You have no active lesions at the moment" ??????

Psychologist suggests I am making up symptoms because I am divorced,
am attention seeking and am stressed and anxious.
He looked at my MRIs and said " Your symptoms don't match the lesions in your brain therefore it is physiologically impossible to relate your symptoms to your lesions, it just doesn't make any sense....oh dear!
He says my symptoms will disappear when I am not stressed and anxious, it is all in my head, I am imagining my symptoms....oh really!!
"Stay off the internet and don't research MS you are convincing yourself you have the symptoms by reading info............"
I have a truck load of symptoms described by the neuro as a "conundrum"
Like everyone else I have pins and needles, fatigue depression, burning pain, numbness, clumsiness, trouble walking, stiffness blurry vision / double vision, memory problems, comprehension and spelling problems, speech problems..............
Age 49.9999999................ only one week left of my 40's sob sob!

Tara

[Quixotic1]

bump

[cjacks]

Bump

[Charley123]

Charley123, Charley, 65, undiagnosed but new doc thinks MS is a possibility, more tests will tell (or not) sister/mother with MS, tons of MS symptoms especially heat intolerance, lead-legs, right sided weakness and trembling.  Thanks for doing this!  Maybe each month you could ask for it to be done again for the new folks?  Charley

[Sunnytoday]

This is amazing! (course, I'm terrible with names!)
Sunnytoday, female, 20 yrs. old with a birthday on 10-4 (just like the trucker's say).
No dx. Was originally told "possible MS". Only neruo seen is Dr. DWI (deal with it)
Symptoms stretch a mile, but am also treated for asthma, severe allergies, gastroparesis, scoliosis, severe migraines, and very low estrogen levels.

[Tahiri_Veila]

Tahiri female 22 years old.  Symptoms started 2005. No diagnosis possibly MS or fibromyalgia.

[Sarahsmom46]

Julie (Sarahsmom46), 46 y/o, from Virginia, "neuro event" occurred in May 08.
presently undiagnosed, neurologist considering MS sending me for a second opinion to MS center at Johns Hopkins,
MRI showed 2 spots in periventricular, O-bands in CSF but less than required number for diagnosis,
Lots of neuro pain in legs, gait and balance issues continuing.
Otherwise healthy.

Its great to see the list of members.  Thanks for doing this Heather!!!

[sunshine8]

Sunshine8, 33 year old female (just entering my prime :) )

"Possible MS"

Abnormality discovered on CT after accident. Had a follow up MRI where lesions were found. LP, VEP and bloodwork negative. Mild dizziness was only presenting symptom. (All in the Fall of 2007)

6 month later, new lesions appeared on follow up MRI and presented with balance issues and some leg weakness. Spine MRI shows no lesions. Recently had first bout of Optic Neuritis. Doctors think they caught MS at its onset, which is why a lot of the tests were negative originally.

[willowwoman7]

Willowwoman7, 52 female, dx'd 11/2007 MS (doc says at least 20 years) possibly secondary progressive. Lupus, iGm messangiopathy (kidneys)

[margaretta]

Margaretta (Margaret) age 33.  no dx yet,  but neuro thinks it is ON w/uhthoff's symptom.

abnormal tests: delay on VEP
history: Visual disturbance (double vision and bluriness) in January followed by several shorter blurry episodes that spring.  Blurriness is heat sensitive and happening very often now that it is summer.  The thought is that only the first episode was ON and the rest have been uhthoff's symptom.  MRI, neuro-ophthalmologist appt, and neuro appt coming up late aug/early sept.

[Chrystalheart]

Chrystalheart - 41 No idea yet. More symptoms than you can shake a stick at.

[Bob368]

Bob368 - Bob 45 years old

Dx with MS R-R  September 2006

Dx with bipolar type-1 January 2006

Medications I'm being prescribed:
1.) Copaxone
2.) Seroquel
3.) Topamax
4.) Gabitril
5.) Klonopin
6.) Cymbalta

Bob :)

[Lulu54]

Hi Chrystalhart and Bob,
You may not realize it, but you have posted on a really old post.  If you would, please take a minute and start a new post and introduce yourself to our community.

So many people won't stop and read this since it is from 2008 ... we're pretty lazy about reading these old posts.

Welcome to both of you here - I'll watch for your new posts.

be well,
Lulu