195469 tn?1388326488
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
Cancel
124 Answers
Page 7 of 7
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
420469 tn?1217650963
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
378497 tn?1232147185
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
233622 tn?1279338505
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Ley5792.....age 24.........un-diagnosed.......doc's believe MS.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
333021 tn?1207763233
bump
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
450140 tn?1317950904
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
398059 tn?1447949233
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
420469 tn?1217650963
Nerve_Wrecked, female, age 33.

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


Christine
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
198419 tn?1360245956
sllowe (SL)........age 38.......diagnosed 2007......MS.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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)
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
alamosa, age 35
ON dx 2002
MS dx 2003
Just gave blood today to test thyroid; I think there is a problem there too.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
338416 tn?1420049302
Jensequitur (Jen) age 37 (eek!) DX in March 2007 with RRMS
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
164435 tn?1377105856
KITT    AGE 49  DX  MS  APRIL 18TH 2007 WITH RRMS
DX WITH ON MAY 2  2007
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
405614 tn?1329147714
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!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
393986 tn?1303829575
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.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Want to feel well!!! (aka Wanna)  

48 yrs old...undiagnosed (but NOT MS,Fibro,CFS,Lyme)
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
359574 tn?1328364024
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
338489 tn?1215561709
mom9335     39 year old son dx with MS dec, 2007.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
429949 tn?1224695179
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
279234 tn?1363108849
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.

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
433467 tn?1223003802
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.  
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
470613 tn?1207316271

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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
470613 tn?1207316271
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
429700 tn?1308011423
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

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
422104 tn?1209767504
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
389314 tn?1200540676
tanky - Niki, 31 - diagnosed with MS in Nov. 2007
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
413836 tn?1206468712
Hi Heather:

Hope all is well!!

Gollie, 49  MS dx 2/2008 DMD-Copaxone
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
470162 tn?1285755313
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


Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
147426 tn?1317269232
bump
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
333021 tn?1207763233
Bump
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
505094 tn?1240321031
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
486038 tn?1300066967
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
Tahiri female 22 years old.  Symptoms started 2005. No diagnosis possibly MS or fibromyalgia.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
559187 tn?1330786456
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!!!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Avatar universal
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.

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
400099 tn?1282958464
Willowwoman7, 52 female, dx'd 11/2007 MS (doc says at least 20 years) possibly secondary progressive. Lupus, iGm messangiopathy (kidneys)
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
560901 tn?1216061573
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1064552 tn?1322583358
Chrystalheart - 41 No idea yet. More symptoms than you can shake a stick at.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
1012981 tn?1322606893
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 :)

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
572651 tn?1333939396
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

Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Your Answer
Avatar universal
Answer
Do you know how to answer? Tap here to leave your answer...
Answer
Answer
Post Answer
A
A
Doctor Ratings & Reviews
Who are the top-rated Neurologist in your area?
Multiple Sclerosis Community Resources
Top Neurology Answerers
987762 tn?1331031553
Blank
Australia
5265383 tn?1483811956
Blank
ON
Avatar universal
Blank
Queensland, Australia
1780921 tn?1499305393
Blank
Queen Creek, AZ