Aa
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
I'll start....
Heather3418 (Heather) age 54......diagnosed-1995 ......MS
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
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
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 :)
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 :)
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.
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.
Willowwoman7, 52 female, dx'd 11/2007 MS (doc says at least 20 years) possibly secondary progressive. Lupus, iGm messangiopathy (kidneys)
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.
"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.
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!!!
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!!!
Tahiri female 22 years old. Symptoms started 2005. No diagnosis possibly MS or fibromyalgia.
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.
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.
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
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
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
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
Sue
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
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
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
Sammy
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
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
My luck it will be nutcase!!
hugs wow there are a ton of you out there!
Mary
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.
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.
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.
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.
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
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
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