Aa
ATTN: All new members, please check in for Quix to read
Wow, it sure has been busy here the past few months and we love having all of you new members here, even though we hate that you are dealing with MS (or the possibility).
Quix says she will be back with us very soon (maybe even this weekend if all goes well), and I thought it would be helpful if we could gather just a few bits of information about our new regulars for her to see in one spot.
So, would you please introduce yourself here in a BRIEF post? - we don't want to overwhelm her on her immediate return with too much to read.
If you have joined us over the summer months and have not yet met Quix, please add to this thread. Maybe your name, diagnostic status (dx'd or in limbo), and a line or two of whatever else you would like to share about yourself.
Think of this exercise like introducing yourself in a big group meeting :-)
Be well,
Lulu
Quix says she will be back with us very soon (maybe even this weekend if all goes well), and I thought it would be helpful if we could gather just a few bits of information about our new regulars for her to see in one spot.
So, would you please introduce yourself here in a BRIEF post? - we don't want to overwhelm her on her immediate return with too much to read.
If you have joined us over the summer months and have not yet met Quix, please add to this thread. Maybe your name, diagnostic status (dx'd or in limbo), and a line or two of whatever else you would like to share about yourself.
Think of this exercise like introducing yourself in a big group meeting :-)
Be well,
Lulu
Thank you all for joining in here. I like to meet all the newcomers and see if I have any ideas about their stories. I'll be reading your posts and greeting you soon.
Quix
Quix
Hi, I am a 43 year old mother of four. Ages, 2, 4, 17 & 20. Been having problems off & on for several years. Recently I had my first Brain MRI without contrast. Results, appears normal, except for a small area of periventricular white matter increased FLAIR. Neuro said this ruled out MS. Neuro did CBC and I was DX'd with Anemic and Parathesia possilby Fibromyalgia.
Next, few weeks later, I went to ER for Lymnodes swallon like a golf ball. Refered to ENT who did ANA blood test (Positve). He did lip biopsy (How long to heal?). Positive for Sjogren's.
ENT referred me to Rhematologist/Immuniologist he thinks Sjogren's is secondary.
Scheduled to see Rhematologist on Oct 1st.
Fighting depression, increased appetite due to stress on whats wrong with me.
Next, few weeks later, I went to ER for Lymnodes swallon like a golf ball. Refered to ENT who did ANA blood test (Positve). He did lip biopsy (How long to heal?). Positive for Sjogren's.
ENT referred me to Rhematologist/Immuniologist he thinks Sjogren's is secondary.
Scheduled to see Rhematologist on Oct 1st.
Fighting depression, increased appetite due to stress on whats wrong with me.
My name is Lori. I've been diagnosed with Degenerative Arthitis in my back, Fibromyalgia, Chronic fatigue Syndrom, Depression, Migrains and I'm having a lot of memory problems. In '92 Ihad an acoustic neuroma removed (benign). My doc did an MRI, I'm still waiting to hear the results. He's very slow and I'm very frustrated.
i'll jump in. 56, three grown children, married. symtoms probably started in my 20s. thought i might have lupus because the heat bothered me so much ( but hey, i was in AZ!) sx really hit around 1998 when i was struck by an indescribable exhaustion. then over the years, numbness, pain, l'hermitte's, language loss, speech pattern slowed, tripping, falling, bumping. my husband thought i was clumsy! finally, in 2007, i was diagnosed with ms. i also found i have a large arachnoid cyst. that doctor eventually fired me: told me to "get on with my day, and he would get on with his." so i tried to get on...but i got worse. then i found my current neuro. she is an angel and brilliant. put me on infusion, put me on levothyroxine, antidepressants, and rebif. i've had two infusions, recently prednisone. seems i might be in "progressive". considering tysabri or chemo. scary, but today i feel good. today i am grateful for all of you here.
hi,
i am in limbo. i have lots of vision issues, some speach/mental clarity issues and somedays just do not feel right in my own skin. i have 10 small white matter spots on my brain which has resulted in a whole host of tests. spinal/cervical MRI - clear. tons of bloodwork - all clear. neuropsych testing - normal to above normal. just had a LP done and am waiting the results. also had a VER which was slightly abnormal but not enough to really help with diagnosis i am told.
somedays, fortunately most days, i feel pretty good and together. other days, i am a mess. my vision bothers me more than anything - lots of blurriness, trouble focusing, etc - no pain though so i am grateful for that.
look forward to hearing from you more...
rhonda
i am in limbo. i have lots of vision issues, some speach/mental clarity issues and somedays just do not feel right in my own skin. i have 10 small white matter spots on my brain which has resulted in a whole host of tests. spinal/cervical MRI - clear. tons of bloodwork - all clear. neuropsych testing - normal to above normal. just had a LP done and am waiting the results. also had a VER which was slightly abnormal but not enough to really help with diagnosis i am told.
somedays, fortunately most days, i feel pretty good and together. other days, i am a mess. my vision bothers me more than anything - lots of blurriness, trouble focusing, etc - no pain though so i am grateful for that.
look forward to hearing from you more...
rhonda
Hi I am in limboland I am a 29 year old female with several lesions within periventricular white matter. I have had pain in hands and feet, vision changes, electrical sensations, creepy crawlies, etc,
Hope to hear from you soon Take care
Hope to hear from you soon Take care
COMMUNITY LEADER
Sorry I didn't mean to make it so long, i'm a wind bag, sorry!!!
Cheers.......JJ
Cheers.......JJ
COMMUNITY LEADER
Hi Quix, I've learned a lot from reading your very informative health pages, thankyou for taking the time to simplify medicko speak who like to use really really big words :)
This started progressing 6 years ago which is when i first lost the use of my legs, my 2009 episode included the following and yet i'm still un-diagnosed, go figure.
Dysarthria? - slurred/stuttering speech
Dysphagia? – (mild) swallowing crumbly food
Dysphasia? – Lexical losses – nouns specifically
Spasms? – left ribcage (hug?), legs
Clonus? – excessive bouncing steps/movement
Spasticity? – stiffening of limbs, difficulty in straightening knees
Cramping? – left hip, both knees waking me from sleep, left hand
Fatigue? – (different to my end of day fatigue) Unresolved by sleep or resting, unable to hold body upright
Diplopia? – blurred vision
Vertigo? – moving floors, walking on a trampoline feeling, falling over if change in direction or stop, falling backwards with eyes closed
Bladder issues? – incontinence, urgency
IBS? – constipation
Paresthesia? – pins & needles in feet, weird tingling in thumbs/fingers, hot spot, numb nose tip, numb feet
Tics? – under right eye, odd spots on leg
Circulation issue? – purple feet, seeing stars on bending forward
Abnormal gait? – started as intermittent immobility, slide shuffle steps and progressed to puppet walking, now fairly normal with occasional foot drop
Tremors(s) – (inconsistent) intention tremor, postural tremor (sitting, lying, standing), visible tremor in fingers, hands, eyelids, arms & occasionally head
Hope your loving your new accomodations, i think you've been missed and everyone will be glad to hear your news. I personally would like to thank you for all the support you have unknowingly provided, you've have posted a plethera of information, so I thank you!
Cheers.......JJ
un-dx
Australia
This started progressing 6 years ago which is when i first lost the use of my legs, my 2009 episode included the following and yet i'm still un-diagnosed, go figure.
Dysarthria? - slurred/stuttering speech
Dysphagia? – (mild) swallowing crumbly food
Dysphasia? – Lexical losses – nouns specifically
Spasms? – left ribcage (hug?), legs
Clonus? – excessive bouncing steps/movement
Spasticity? – stiffening of limbs, difficulty in straightening knees
Cramping? – left hip, both knees waking me from sleep, left hand
Fatigue? – (different to my end of day fatigue) Unresolved by sleep or resting, unable to hold body upright
Diplopia? – blurred vision
Vertigo? – moving floors, walking on a trampoline feeling, falling over if change in direction or stop, falling backwards with eyes closed
Bladder issues? – incontinence, urgency
IBS? – constipation
Paresthesia? – pins & needles in feet, weird tingling in thumbs/fingers, hot spot, numb nose tip, numb feet
Tics? – under right eye, odd spots on leg
Circulation issue? – purple feet, seeing stars on bending forward
Abnormal gait? – started as intermittent immobility, slide shuffle steps and progressed to puppet walking, now fairly normal with occasional foot drop
Tremors(s) – (inconsistent) intention tremor, postural tremor (sitting, lying, standing), visible tremor in fingers, hands, eyelids, arms & occasionally head
Hope your loving your new accomodations, i think you've been missed and everyone will be glad to hear your news. I personally would like to thank you for all the support you have unknowingly provided, you've have posted a plethera of information, so I thank you!
Cheers.......JJ
un-dx
Australia
Hi,
limbolander here! sx are terrible leg pains right worse than left. As some one sated above I also have a wet feeling on my left calf, urinary inc. muscle spasms in legs and arms. Had a mri, emg, upper and lower EP, visual and audio as well. I go back to neuro 10/28 hopefully for a dx. Doc did question long term antibiotic use.
I will let everyone know what happens at the dr.
Thanks for all the support
kellie
limbolander here! sx are terrible leg pains right worse than left. As some one sated above I also have a wet feeling on my left calf, urinary inc. muscle spasms in legs and arms. Had a mri, emg, upper and lower EP, visual and audio as well. I go back to neuro 10/28 hopefully for a dx. Doc did question long term antibiotic use.
I will let everyone know what happens at the dr.
Thanks for all the support
kellie
I am 39. I have one son who is nineteen. I am in limboland and have had symptoms since March. Mostly numbness in hand and sharp pains in head. LP negative, Lesion on thalamus. No conclusion so far.
It seems that the word "newbies" is used in a detestable way. Do i sense some animosity. I hope i haven't intruded here. I don't want to make anyone feel uncomfortable, or lower their self-regard.
Hi Quix - here's your list of some of the newbies around here- I know you can't catch up from the past few months but I thought this owuld perhaps be of some help to you! :-)
as always,
Lulu
as always,
Lulu
Hello, I'm Bob, 45 years old. I started having problems when i was 39. Drastic changes in vision, eye pain, coordination, severe bladder pain, tremors, cognitive problems, just to name a few. After three years and seeing every specialist that you can see, for every condition that you can have from head to toe. And going through 3 neurologist, and I'm not going to go into all the many of test i have had done. I was diagnosis with MS in september of 2006.
Thanks,
Bob :)
Thanks,
Bob :)
Hi and thanks for all the info & help you've given to all on this forum.
I have intermittent episodes of numbness - face to toe, with heaviness and extreme drowsiness - need to pull over while driving (1st episode in 2003 or 2004, more frequent over this past year).
Had 2 MRI's in 11/2008 showing Patchy T2 hyperintensity throughout cervical spinal cord +arthropathy & bilateral foraminal stenosis. Lyme, thyroid, low potassium ruled out. Awaiting insurance approval for brain MRI. PA looking at signal transmission - but has not mentioned MS to me and I hadn't even considered that there could be a connection until this week.
Thanks,
milwrite
I have intermittent episodes of numbness - face to toe, with heaviness and extreme drowsiness - need to pull over while driving (1st episode in 2003 or 2004, more frequent over this past year).
Had 2 MRI's in 11/2008 showing Patchy T2 hyperintensity throughout cervical spinal cord +arthropathy & bilateral foraminal stenosis. Lyme, thyroid, low potassium ruled out. Awaiting insurance approval for brain MRI. PA looking at signal transmission - but has not mentioned MS to me and I hadn't even considered that there could be a connection until this week.
Thanks,
milwrite
Hello -beginning in February, I felt very light-headed and begun having balance problems. When I turned my head from side to side the room would shift abruptly. Also, when I stepped forward, one foot would feel like it was sinking and a jolt would run through my body sometimes causing my head to snap back violently. I had all day headaches for the first month. Symptoms since then include tremors, slight numbness in right hand, twitching, perceived trouble swallowing, hot feelings all over, and rigidity / slight pain in right leg. I have had 2 brain MRI's, 1 spine MRI, EMG's of leg, spine and arm, evoked potentials and multiple bloodtests, all negative. The balance is defintely improving and the headaches are gone. I still have twitching and a little pain/stiffness in leg. Both neuros I have seen attribute initial balance condition to inner ear infection and the rest of it to anxiety or possibly BFS. I'd like to believe this, but am still concerned by the possibility of remission-type MS. My next stop is a balance center, though my only balance problems now appear to be around running water, i.e., in the shower, washing dishes etc. Heat does not seem to worsen my symptoms, as after a hot tub or work-out, for example. Thanks, John
Hello,
erm...since April...numb arms, very heavy numb left leg, foot drop, altered skin sensation down left side, burning left knee, wet feeling, L'Hermittes (yuck), urine urgency (double yuck)
MRI showed high signal changes and a 1cm lesion, taking carbamazapine and in the wait and see category - feeling much better
oh and now seeing rodents running round my house out of the corner of my eye...
Val x
erm...since April...numb arms, very heavy numb left leg, foot drop, altered skin sensation down left side, burning left knee, wet feeling, L'Hermittes (yuck), urine urgency (double yuck)
MRI showed high signal changes and a 1cm lesion, taking carbamazapine and in the wait and see category - feeling much better
oh and now seeing rodents running round my house out of the corner of my eye...
Val x
To not overwhelm Quix with reading too much, please try to keep this intro brief. There will be plenty of time to give more background information at she gets into the swing of things here. Thx.
Hi... I began reading discussions on this forum to learn what I can about MS - actually better than googling. I've learned a lot more than I knew before which was absolutely nothing. I've learned there are many different versions, many different ways people are affected, and so many variables. I wanted to find out enough that would prove that I don't have MS.
Briefly(?), following a modified radical mastectomy for Stage IV breast cancer I had chemo & radiation (strong chemo, was being treated as high risk). The neuropathy experienced with chemo faded by summer. The middle of summer I began noticing that I veered to the left out in open areas & down hallways. Oncologist sent me to a neurologist and I've seen him three times a year since, having glucose tolerance tests before each visit.
First visit: was checked with electrodes - almost half-way to the knees before he hit 'normal' and the same on the forearms - then, checked the lower back, neuropathy there as well. I get all the many tests in the office (reflexes, push/pull with arms/legs/feet, scraping bottom of foot, look here/there, follow the finger, stick out tongue, make this grimace, etc. - I forget all the others) - this at every visit.
Two years ago - brain MRI - lesions (sorry, I don't know details - plan to ask at next visit).
This year - 2nd brain MRI - neurologist said he & radiologist thought the lesions indicated MS. - - Subsequently, had thoracic & lumbar MRIs (spinal cord was clear). - - Also, had the auditory & visually evoked tests (sorry, haven't learned all the names for these) - and passed both. - - The glucose tolerance tests sometimes have other requests asked for - and once I was sent for a blood test that took 11 vials (he had several of those repeated another time). I'm not sure what all has been tested for - will ask at next visit.
Neuro. had been wanting to do a lumbar puncture but I kept putting him off - and he thought going on Copaxone would be a good idea, to lessen the possibility of any neurologic incident - & lessen the severity of one should I have it. I finally asked if there could be a 2nd opinion before doing it - got it - she agreed with him about MS & Copaxone (given her examination & questioning of me, medical history, review of the brain MRI, his notes, etc.).
Next, lumbar puncture & MRI on the neck: spinal cord clear with both. He did a fine job with the LP - 2 injections to numb, the LP (never felt that one) - had said to have someone drive me & to recline the seat as far as possible then go to bed when I got home - no side effects at all. I'm distressed at reading what horrible experiences some have gone through.
Neuro. asked for a third opinion - yup, he did. That one disagreed on starting Copaxone - just go with yearly brain MRIs - and watch (that seems to be what's happening).
So, I've passed all the tests except the brain MRI & the extent of the neuropathy found with the electrodes. The neuropathy worsened over time so I eventually began using a cane. Currently, I walk like a drunk - even with a cane.
I _can_ cross an open area (if not too far) by thinking about it very hard, concentrating, & focusing on the end goal, almost in a run - but, I don't trust myself out & about without a cane - I need the third leg. In the house, I'm able to do the 'pillar-to-post' thing - as long as I can reach out & touch something I'm okay. Turning (even in the house) is where I run into problems - sometimes threaten to pitch backward. I have to be careful in the kitchen in particular since that is where the biggest open area is & I'm always turning.
At my last visit in July, there was no mention of Copaxone - & come back in three months. I sorta miss him! I saw him so many times in March, April, May - & with the tests & 2nd/3rd opinions - my calendar looked like scrambled eggs. When he gets into the office he turns on the computer & there are the results of whatever he's ordered. After each test (blood, MRI, LP, etc.), he would call me with the results & what he wanted to do next - 9am even, or left mssgs. after 6pm (before & after appointments).
Soooo, at this point, I'm not convinced I have MS. That's my story & I'm sticking to it. :-)
We'll see... Culling suggestions from discussions, I've started a list of questions to ask and records I'd like copies of, etc. - - - [sorry this got so long!]
Briefly(?), following a modified radical mastectomy for Stage IV breast cancer I had chemo & radiation (strong chemo, was being treated as high risk). The neuropathy experienced with chemo faded by summer. The middle of summer I began noticing that I veered to the left out in open areas & down hallways. Oncologist sent me to a neurologist and I've seen him three times a year since, having glucose tolerance tests before each visit.
First visit: was checked with electrodes - almost half-way to the knees before he hit 'normal' and the same on the forearms - then, checked the lower back, neuropathy there as well. I get all the many tests in the office (reflexes, push/pull with arms/legs/feet, scraping bottom of foot, look here/there, follow the finger, stick out tongue, make this grimace, etc. - I forget all the others) - this at every visit.
Two years ago - brain MRI - lesions (sorry, I don't know details - plan to ask at next visit).
This year - 2nd brain MRI - neurologist said he & radiologist thought the lesions indicated MS. - - Subsequently, had thoracic & lumbar MRIs (spinal cord was clear). - - Also, had the auditory & visually evoked tests (sorry, haven't learned all the names for these) - and passed both. - - The glucose tolerance tests sometimes have other requests asked for - and once I was sent for a blood test that took 11 vials (he had several of those repeated another time). I'm not sure what all has been tested for - will ask at next visit.
Neuro. had been wanting to do a lumbar puncture but I kept putting him off - and he thought going on Copaxone would be a good idea, to lessen the possibility of any neurologic incident - & lessen the severity of one should I have it. I finally asked if there could be a 2nd opinion before doing it - got it - she agreed with him about MS & Copaxone (given her examination & questioning of me, medical history, review of the brain MRI, his notes, etc.).
Next, lumbar puncture & MRI on the neck: spinal cord clear with both. He did a fine job with the LP - 2 injections to numb, the LP (never felt that one) - had said to have someone drive me & to recline the seat as far as possible then go to bed when I got home - no side effects at all. I'm distressed at reading what horrible experiences some have gone through.
Neuro. asked for a third opinion - yup, he did. That one disagreed on starting Copaxone - just go with yearly brain MRIs - and watch (that seems to be what's happening).
So, I've passed all the tests except the brain MRI & the extent of the neuropathy found with the electrodes. The neuropathy worsened over time so I eventually began using a cane. Currently, I walk like a drunk - even with a cane.
I _can_ cross an open area (if not too far) by thinking about it very hard, concentrating, & focusing on the end goal, almost in a run - but, I don't trust myself out & about without a cane - I need the third leg. In the house, I'm able to do the 'pillar-to-post' thing - as long as I can reach out & touch something I'm okay. Turning (even in the house) is where I run into problems - sometimes threaten to pitch backward. I have to be careful in the kitchen in particular since that is where the biggest open area is & I'm always turning.
At my last visit in July, there was no mention of Copaxone - & come back in three months. I sorta miss him! I saw him so many times in March, April, May - & with the tests & 2nd/3rd opinions - my calendar looked like scrambled eggs. When he gets into the office he turns on the computer & there are the results of whatever he's ordered. After each test (blood, MRI, LP, etc.), he would call me with the results & what he wanted to do next - 9am even, or left mssgs. after 6pm (before & after appointments).
Soooo, at this point, I'm not convinced I have MS. That's my story & I'm sticking to it. :-)
We'll see... Culling suggestions from discussions, I've started a list of questions to ask and records I'd like copies of, etc. - - - [sorry this got so long!]
Hi Quix
I've read alot about you, thank you for sharing with all of us.. here's just a little
about me...
Im Cyndi, Im 48, married, three children.. , I work in Hospice,
I've been dealing with sx for so
many years that frankly i've lost track on actually when they really all started.
I am still in Limboland.. I was dx with migraines, I recently
had enough of my old neuro and took some good advice and now I have an
appointment with a Specialist In Oct.
I look forward to having you back.
Cyndi
I've read alot about you, thank you for sharing with all of us.. here's just a little
about me...
Im Cyndi, Im 48, married, three children.. , I work in Hospice,
I've been dealing with sx for so
many years that frankly i've lost track on actually when they really all started.
I am still in Limboland.. I was dx with migraines, I recently
had enough of my old neuro and took some good advice and now I have an
appointment with a Specialist In Oct.
I look forward to having you back.
Cyndi
Hey!
I've read all about you Quix!! Be good to meet you when you finally get back.
Well I've already typed a huge 'status of symptoms' post recently titled 'need to offload (!)' which will tell you all, but in brief...
I'm Vicky, 34 and a midwife from Liverpool, UK.
Rheumy thought I had RA 3 years ago...loads more symptoms have come on board now. Lupus, Lyme, fibro have been ruled out..MS being considered now and seems pretty likely tbh..going through the MRI, consultation with neuro stage at the mo...rheumy is not ruling out MS with RA or similar? Let's wait and see.
You guys have been great recently and I've gone from thinking I was going stir crazy to grappling back my sanity with both hands and accepting that whatever is going on is messing with my head....quite literally!
Anyway, Quix...be good to chat when your not so hectic
Speak soon
Vic xxx
I've read all about you Quix!! Be good to meet you when you finally get back.
Well I've already typed a huge 'status of symptoms' post recently titled 'need to offload (!)' which will tell you all, but in brief...
I'm Vicky, 34 and a midwife from Liverpool, UK.
Rheumy thought I had RA 3 years ago...loads more symptoms have come on board now. Lupus, Lyme, fibro have been ruled out..MS being considered now and seems pretty likely tbh..going through the MRI, consultation with neuro stage at the mo...rheumy is not ruling out MS with RA or similar? Let's wait and see.
You guys have been great recently and I've gone from thinking I was going stir crazy to grappling back my sanity with both hands and accepting that whatever is going on is messing with my head....quite literally!
Anyway, Quix...be good to chat when your not so hectic
Speak soon
Vic xxx
Okay, I'll be first!! I'm Katie, 28 years old.
I've had numbness in my left hand for six months now. The doctors kept assuring me it was carpal tunnel but my EMG was negative for nerve damage. Head/neck MRI showed 3 or 4 small lesions (not sure of their locations yet), LP was positive and bloodwork ruled out other causes such as Lyme Disease.
Am going back to neuro tomorrow to find out if this constitutes a positive MS diagnosis or if more testing is required and where I go from here.
Am not "excited" to be part of this community but I'm so thankful to have found it!!
I've had numbness in my left hand for six months now. The doctors kept assuring me it was carpal tunnel but my EMG was negative for nerve damage. Head/neck MRI showed 3 or 4 small lesions (not sure of their locations yet), LP was positive and bloodwork ruled out other causes such as Lyme Disease.
Am going back to neuro tomorrow to find out if this constitutes a positive MS diagnosis or if more testing is required and where I go from here.
Am not "excited" to be part of this community but I'm so thankful to have found it!!
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