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Regroup...
by Heather3418, Nov 04, 2007 06:38AM
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
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Penn
Love you all.
God bless,
Frann
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
TREMORS ON LEFT SIDE MADE ME SEE
NERUO.
Thanks Heather!! You guys are all so great!!
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
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.
Hi bethany we are the same age!!
Prayers and love to you all.
Just joined here and I think this is a great forum.
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
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*
Age 51, female, two grown children, hysterectomy in 2003
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
Mayda just a joke ( Mayda Serrano abbrev. MS, how convinient! ja!)
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 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.
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.
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*
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
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
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!
Found this a month ago & love having somwhere to go !! People who understand or even just reading & learning new things.
THANK GOD FOR ALL OF YOU.
Cowboy up
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).
Symptoms started 9/07 and maybe a repeat of symptoms from7/04.
Welcome back Heather!
Rebeccah
Syn
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
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
36 and from Florida.
wainting for dx
Cherby
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
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.
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.
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
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
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
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
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
Bless both you, Heather and Quix keeping track of all of us, don't know how you do it. Thanks!
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.
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
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
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
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
Undiagnosed (doctor stumped)
Symptoms started Nov'05 (although some odd things before that).
Christine
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)
ON dx 2002
MS dx 2003
Just gave blood today to test thyroid; I think there is a problem there too.
DX WITH ON MAY 2 2007
Undx'd
Hyper reflexes, left side numbness, paresthesias, blurred vision
Normal MRI's and EP's
Low ferritin, trying iron treatments for 3 weeks
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!
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.
48 yrs old...undiagnosed (but NOT MS,Fibro,CFS,Lyme)
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.
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
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.
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
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.
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.
My luck it will be nutcase!!
hugs wow there are a ton of you out there!
Mary
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
Sammy
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
Sue
Hope all is well!!
Gollie, 49 MS dx 2/2008 DMD-Copaxone
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
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.
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!!!
"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.
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.
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 :)
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