Hi there Whoopde! Welcome to NT. I'm glad you finally got a diagnosis....sorry it was MS. We've got a great group here and we support and encourage each other regardless of what kind of medication we choose to take - or not take. I hope you'll continue to post here and let us get to know you. :)

No New....Returning
 

Yes.....I know....I'm one of those awful people that say that's check in and never do......please don't hold it against me....

Some of you may remember me from a few years ago. Had a doctor tell me I had Lyme disease and I've really enjoyed the past couple of years (hiking, traveling, sailing, etc).

Started having sxs again this past month. In this constant over 100 degree heat it's been pretty rough. Trigeminal Neuralgia sent me back to the doctor. Family doctor immediately sent me to a neuro (we moved to Houston since my last postings). He immediately ordered an MRI and wants me to set up an appointment with an MS specialist. I'm planning to wait until I get the MRI results to do that. This ain't my first rodeo.

Anyway....I'm back to Limboland....I'll be checking back in on everyone.

Welcome back Gigi. Looks like you may have MS after all, huh. I'm so sorry, but at least you're in the right place for support and friendship.:hug:

WB Gigi. sorry you have to come back here, but it sounds like you are at least getting some answers. :hug:

------------------------------------------------------
hello - peace - shalom --
-
my name is dvora - i am 65yrs old - have had ms since i was 22 --
-
have never been on ms specific drugs -- just symptom management -
-
i also have hydrcephalis - hypothyroid - fibromyalgia --- and now 2 herniated spine discs --
-
which is how i found this forum --
-
has anyone here had lumbar punctures or epidural spine injections that they would like to tell about ?/
-
i am going monday for spine shots for my herniated discs --
i would like to know not only the procedure but also the afterward -
-
i care for my grandaughter -- 18 months - 30lbs - energizer bunny energy --
-
we have alternate childcare for monday and tues - can i have her back safely on wed ?
-
so thanks for reading my story --
i would love to read your responses -- sap please -- monday is very soon :-)
'''''''''''''''''''''''''''''''shalom from dvora

hello! and welcome! :hug:

Welcome Dvora glad you are here.:)

Yes I've had one LP and it is uncomfortable, but not painful. After the LP you must last as flat as possible for up to 24 hrs, while your fluid replenishes to avoid a horrible headache. If all goes well, that's about it.

Come in and start a thread or join us in support of others and thank you for joining us..:hug:

epidural spine injection - lp
 

-----------------------------------------------
hi sally - thank for the welcome -
i had an lp yrs ago --- barely remember it --
-
but i do know i never was wanting to do it again ---
course i did not remember labor and delivery either ==
-
until i did it again !!!
-
i am more worried about taking care of he baby on wednesday ?
-
i lived in ohio too - before florida -
i loved the spring in ohio :-)
--
shalom from dvora

--------------------------------------
---------------------------------------------
ok - my shots are over -- did not like them - but i think they did a good job -- g-d willing --
-
i am in bed mostly with ice packs and when i am up i must wear a hard shell body brace --
-
before 2 week checkup i must be evaluated by pt --
sonds good so far --
i am really happy it is over -
-
shalom from dvora

Hi and Welcome,
To all the new people and the returning people. :)

What I have found is:

People with MS are strong people. Why?- because of all the symptoms we get, and we handle them with a good attitude and then we adjust. Even our tests are not so pleasant at times. But we endure. :)

So, welcome to all our friends, and so glad you found us. Nice to meet all of you and hope you join us on the Main MS forum below or The Stumble Inn for other than MS talk.
Take care. :)

not really new
 

I'm not really new, just never have posted here before.
The other forum, which inspired this one, has changed yet again and just is not what it once was.
I've had MS for way over a decade, bad for a while, stable for a while, getting worse now. During the better times I try not to dwell on it and don't spend much time reading about it. Now that things are going downhill again, here I am.
Anyway, I will read a lot, and post sporadically when I think I can help, or need help.
Wishing all of you the best.

Welcome to NT, Goldie! So glad you decided to join us here. Join right in.....we're a friendly bunch. :hug:

Welcome Goldie, nice to have you here..:):hug:

MS since May 2007
 

My name is Colleen, I was dx with MS in May 2007. Symptoms have gotten worse since Jan. 09. I had a relapse in Sept. 10 which resulted in me collectng disabilty from work and now SSD. I am currently doing cytoxan treatments and physical therapy. MS only effects my legs which are really stiff and require me to use a walker to get around. My family completely supports me but I still feel very alone and I am loking for people to connect with who understand how lonely MS can be.

Welcome home Xray/Colleen. I'm so glad your Family is supportive..:) But, even though they mean well, they don't understand, as the members here do.:grouphug:

Thank you for joining us, pull up a chair.:)

Hi everybody.

Like Sgt Bob I'm not yet diagnosed but fear the worst. I have an appointment with a neurologist in a month. So until then I figured I'd come here. For a few weeks I've had tingling in my torso. Not the pins and needles kind associated with numbness but more of a squirming kind. I usually get it on my stomach, lower back, shoulders, and forearms. I only get it when I'm wearing clothes and pulling the clothing away from my body relieves the tingling. I've had these tingling feelings years ago but it was so minor I paid it very little mind. I also get pangs of itching in the same spots but that is more rare. The past week or two i've had trouble with stumbling and feel kind of out of it and dizzy. Also very tired during the day. The last few days i've had some numbness and lack of coordination in my right ring and pinky finger. That lasted for about two days. I've also had some cognitive problems (reading, forming words, math etc.)

On a side note I've been taking Lyrica for 2 months which i know can produce a bevy of symptoms. And to make my story even more strange, I was on the Lyrica to ease scrotal tingling i've had for 13 years. The Lyrica has helped a great deal but now I have these other symptoms. Some of you may have read my other posts about this other mystery condition. I find it strange that the Lyrica has eased the tingling in one area and now I have it somewhere else.

Despite what may be going on with the tingling i'm having below the waist, I can't help but worry that I may have MS. These new symptoms seem like they are spot on for MS. I know that since i've had scrotal tingling for 13 years that its going to get in the way of any other neurological diagnosis.

What I'm basically wondering is if this sort of sensitivity to clothing tingling is normal with MS. I know Lyrica can cause balance issues, fatigue and cognitive problems but i've searched far and wide and haven't found any tingling or numbness related to Lyrica. Not to mention, I was on Lyrica months ago without any side effects like this. I eventually took myself off for a month and started again in August. I guess I'll start there.

I feel bad coming to this site not having been diagnosed yet but it seems like the obvious place to start. I'm 33 and three months ago started a career as a fire fighter. Finally getting my life going in the right direction and now this. I worry that a diagnosis of MS will of course prevent me from continuing in my career.

Any info would be great. I know I can't be diagnosed via the web but lets face it, you all know more about this stuff than most professionals.

Thanks in advance.

Hi elmwood..:Wave-Hello:, Welcome to Neurotalk..:) , So glad you could join us. Sigh...33. I've had this darn disease for longer than you have lived.:eek:

Come on in and join us while you wait for your DX. I hope it's something simpler than MS, but MS is not the worse thing that could happen.

We are all here managing to live a pretty full, good life, while dealing and here to help you and understand, as I'm sure you will support us, too..:hug:

Hello, I'm new here. I currently have an appt. next month to see a neurologist. I'm one of those in limboland. I think at some point today I will try and make a thread with some more information. I hate to be one of those "Does it sound like...?" people but after years of frustration I think I just need someone to talk to.

As much as I hope to not join this "family" because of a neuro issue...you all seem like a very active and welcoming "family". So if this is something I will be dealing with, you will likely see a lot more of me. I hope that's okay :grouphug:

Welcome Home, Monkey:). Waiting for a DX can be frustrating and lonely. This is a good place for you to wait your turn. Come on in and join the chatter.:hug:

Thank you :hug:

Hi and welcome to NeuroTalk Colleen, Elmwood and Monkey! :welcome_sign:
I'm sorry your neuro issues have caused you to have to be here but this is a wonderful group of friendly folks who collectively have tons of experience and knowledge with MS. Join right in wherever you feel comfortable and ask questions as you need to. We all know how frustrating and scary not knowing what is wrong can be.

Hey! You're from GA too :D

Hello everyone, I joined just today.

New to forum and MS.....long....story
 

Been suffering w/dx of Psoratic Arteritis thought to be the Anklosing Spondylitis after putting up with Inflamatory Bowel disease or Chrons and aches and pains for years. Recently, I started researching Enbrel and the side effects because my Rhemy wanted me to try it after trying Humira and Sulfasaliazine before that. Upon looking up the side effects on the web, I relized that I have many of the symptoms of MS...and have had them for years. I just thought I was "wired" differently since my mother has suffered from many of the goofy things that I put up with. Once i realized I have many of the syptoms, I went back to my G.P. with a list of the things that bug me such as: heat...kills me can't work outside in temps above 70...even get hot in the house when moving around...numbness in my hands when I wake up..numbness in my legs when on feet too much..legs are the worst, they feel like boa constrictors wrapped around my calves all the time..they never losen up..run a low fever just about all the time..shooting pains throuout life..jumping muscles thruout life..twitches, trouble peeing, weakness in hands which results in shaking when forcing them to do something tedious, etc. G.P. decided to get an MRI of my brain, lower back and cervical area. I went and picked up the results yesterday and this is what the MRI Brain W and W/O Contrast

There are five small T2 hyperintense fooci scattered within the left periventricular white matter. These are variable size ranging from a couple of millimeters up to approxiamately 4.5 mm. There is also a thin rim of periventricular T2 increased signal at the posteerior aspect of the lateral ventricle on the left. There is a single 9.8 mm oval-shape T2 hyperintense focus within the posterior aspect of the right periventricular white matter. The findings certainly could be related to multiple sclerosis though other demyelinating etiologies including vascultits, chronic ischemic microangiopathy as well as infectious etiology such as Lyme's disease cannot be totally excluded. Clinical correlation is necessary.


My MRI for my lower back states that:

At L4-L5 there is a broad-based disc bulge producing mild flattening of the thecal sac but no significant spinal or neural foraminal stenosis.

At L5-S1 there is a broad-based disc bulge which produces contact with both the bilateral S1 nerve roots and produces moderate bilateral neural foraminal stenosis.

Impression: Broad-based disc bulge at L5-S1 producing contact with the bilateral nerve roots and moderate neural foraminal stenosis. This appears to be slightly increased from the prior exam. No other significant changes. (my previous MRI was in 6/2009)

The cervical spine MRI appeared normal.

I called but haven't heard from my G.P. today, I have an appt for next week.
I called my Rhemy's office since I finally recieved approval from the insurance company yesterday to take Enbrel, and left a message in regards to the fact that I don't think I should start Enbrel until we can figure out the MS issue and recieved no response yet.

Some of the concerns that I have are: are the lesions above similar to what other MS patients have? Does anyone here have Anklosing Spondylitis and MS? BTW, I may also have Sjogren's as well...dry dry nose and mouth, low grade fever, told to check out the Sjogren's foundation website by Rhuemy.

The reason I never pursued MS is because I thought you had to have eye issues with MS, which I have never had eye issues related to MS or Sjogrens.


Sorry to be so long, but the battle I have fought is much longer, been laid off since Jan 2010, not long after I had the tarsal tunnel release that was supposed to eliminate the pain I have. I sometimes think my employer laid me off to be rid of my health issues...

Thank you for bearing with me, Poormommy

Welcome to the board, PM, nice to meet you.:)
Sounds like you have a lot on your plate. I hope you don't have to add MS.

Please come in and join us..:hug:

Thank you..guess it sounds like I am wineing, first time every posting anywhere. Sorry for the misspelled, another feature of my list of issues. I was actually a go-getter manager type, help everyone and not depend on others kind of person that ignored things until I could not ignore any more.
So I am giving the web support thing a try. Thanks again. :o

Don't fret about any whining you may do, because whining is an important part of this forum..:D Who else is gonna hear our whines and cries for help and completely understand, as we do. Family and friends mean well, but they don't have a clue..:D

i'm very new to this.
 

hello my name is chad and i'm 42 years old and i've been having weird things happen to me since about november, let me start there. my father who battled cancer had finally lost his battle to his cancer in november which is about when i started to notice changes, i thought the changes were from the emotions of the loss of my dad but as time went on i have noticed more and more. by the time february came around i was missing a lot of work as they said i had irritable bowel syndrome and put me on a barage of meds. well by the time march came around my job fired me for missing too many days, at this point i was having headaches everyday almost non-stop which would flare into a migraine at the drop of a dime, then my left eye would go blurry. i would have this feeling of pins and needles run down my arms and get numbness in my fingers, and i stumble around, run into walls and trip like i have no balance control, my lower half hasn't went numb but tingles thank god, if i don't write things down i cannot remember them. i get tremors a lot almost like my body is totally shaking on the inside if that makes sense. i cannot go out in the heat anymore as it makes me shake even worse, i used to take very hot showers and now had to be for the most part cool or i get nausea so bad it makes me have to lay down. by this time i have been to3 different family drs. who keep saying it is anxiety and depression they are full of it it seems all they do is read each others reports. well i finally found a good fam dr who cares and is willing to run every kind of test till we figure it out, i got referred to a neuro who i went and seen and what a joke he turned out to be, he hardly looked at my mri of my brain which came back abnormal, i told him i had a severe case of mono about nine yrs ago he didn't seem remotely concerned about it, his diagnoses was he said i had the migraine gene-now howe can he come up to this if there wasnt any testing for it?? i also told him i have this jaw pain on the opposite side of my one sided migraine that goes int my ear and is very painful he told me to go see a dentist and told me to quit taking my pain meds and use a heating pad and most of all find a hobby. now i don't know a lot but i know when i'm in severe pain and this guy tells me to quit my pain meds. as far as the heating pad i told him i cannot be around heat of any kind and he said WHY. he told me i have anxiety and depression and i told him that if he had to live with whay i have he would have anxiety and depression and i walked out of that visit. i know have an appt next week with a neuro that's specialty is ms. hopefully they can figure this out as i have been living on retirement since april(medicaid pending) and i'm almost broke due to all these drs i've had to see and all the different meds i have been put on.
i'm sorry i wrote a novel but i but i feel i have been let down by the very ppl that are supposed to help and I'M SCARED!

very new to this
 

in addition to the story i wrote, one last thing that happens more frequent now is the bottoms of my feet feel like someone is hitting them with a hammer.
my meds incude daily:
neurontin= 300 mg 3 times a day
oxycodone= 5 mg 4 times a day
proprananol for bp 2 times a day
paxil 40 mg once a day

Welcome Chad, nice to meet you.:)

I hope this new Neuro does a battery of tests to eventially give you A diagnosis. I don't think Docs/Neuros like to give a MS DX, because there is no cure and it's hard to pin it down, for sure..:rolleyes:

Hang with us and we will try to help you through the process.:hug:

Welcome to all the new members. I'm glad you found us. I hope we can help with your basic questions. We are good listeners though. We have all been through the diagnosing process and it is hard and time consuming, and yes costly.

Nice to meet all of you. :)

i'm new to this
 

hello kitty,
thanks for the reply!
first off let me say that it is one of the most frustrating things to try and get people to understand what you are going through and ALL of them including some family think you are faking an illness.
my last mri of my brain was done with ans without contrast and it came back saying:
scattered nonspecific punctate t2 and flair hyperintensities within the supratentorial white matter of both cerebral hemispheres, findings associated with no surrounding edema, mass effect or abnormal enhancement. this may result to gliosis from previous traumatic infectious/inflammatory or vascular events. similar changes can be seen transiently in patients with migraine headaches. demyelinating process such as multiple sclerosis is not entirely excluded. neoplasm is felt to be unlikely follow-up mri in 3 to 6 months.

now i really don't know what that means and no one has explained it to me but when i seen the first neuro i filled out 9 pages of questions about my history and guess what they sat behing the doctor the whole time and he never bothered to look at them, this doctor was from florida and came here to arkansas his name was gotfried jean-louis first off he was french and i just couldn't understand him. the only tests he did on me that day was he checked my reflexes and checked to see if i could feel this vibrating thing on my feet, i told him at that time i wasn't having any feet problems. then the only other thing he did wasask me how many fingers i saw him holding in my peripheral vision, he automatically said i have the "migraine gene" i have no family history of migraines and i have never had them before. i did a little research and found that there is a such thing as a migraine gene however it still is so newly found they cannot diagnose you with it by looking at you. I was so frustrated when i was telling him all the things wrong with me and he either didnt listen or didnt care. at the time i was taking hydrocodone for my migraines/and or the constant headache i had in between migraines, he tells me to quit taking them and then told him about my jaw pain when i chew it shoots a pain into my left ear and does to this day he told me to go see a dentist, as far as the spactisity i get in my hands and feet and i mean my fingers will draw up in a major cramp and my feet have cramped so bad it has woke me up many of nights, he told me spactisity isnt associated with ms. i also told him i CANNOT be in or around any heat or i get the whole body shakes something bad, so he tells me to use a heating pad on the base of my skull( i guess he wasn't listening) when told about the twitching i get pretty regular he didn't say one word. i told him sometimes i see spots floating around out of my left eye which went blurry for a long time now and sometimes i see what looks like car lights passing by but there is no cars and all he could tell me was to get a hobby. when i asked him if he thought it could be ms he proceeded to look at only 1 of the pictures on my mri and showed me this one area(and again dont know what i was looking at) and he told me that ms would only appear here. i'm not a doctor but i have to disagree with what he just told me, one last thing i told him was my memory and thoughts are really messed up, i used to do a lot of work with computers and now have trouble remembering where certain keys are and i have to ask a lot of times in the middle of a conversation-what was i talking about, and he wasnt even concerned about that! so once again i have to self pay everything (medicaid/medicare pending) and he cost quite a bit of money for absolutely nothing, the only thing he did change was he took me off norvasc for my bp and put me proprananol as he said it would help with my pain, the pharmacist was wondering why he would tell me that as she said there really isn't any pain properties in it. the only problem with me is i am living on my retirement and i am running out fastly and cannot afford to keep getting doctors/specialist like that. i am going to a neuro that specializes in ms on wednesday so hopefully i am going to keep my fingers crossed. my gp has run so many blood and urine test i could turn blue but she wanted to rule everything out. she is the 4th doctor i had went to and she really does care she said we will not let one stone be unturned. i just wish and this is my opinion that doctors and specialist would go back to the oath help now worry about money later but i guess those days are gone.

wish it wasnt so tough on me though
 

thank you sally, i hope this appt goes better than the last.

in addition
 

in addition to eveything else the night sweats have returned and no doctor to date can give me an explaination, i will wake up 2 to 3 times a night soaked as if i took a shower i have no fever when this happens i just have to change clothes, sheets and i have 3 different pillows to switch out with each and every time, when i finally do get up i know its going to be a bad day as it makes me feel drained i get insombnia quite often also, and now my ibs is flaring up, it hasn't for a month or so but now it had been alternating between "D" and "C".

Chad, I can't help but wonder if you have been evaluated for
Lyme disease. Night sweats are a sure sign of infection of some kind. Lyme does go into the brain, and is called neuroLyme when that happens.

Also low blood sugar will cause night sweats like that.

my blood sugar was fine and i was tested for lyme, chrohns, celiac and a gob of other things my last blood/24 hr urine test keeps saying my ephinepherine level is high and she has no explaination for it, and of course my cholesterol is high so my gp is baffled at this point.

about 9 years or so ago i had a severe case of mono which i wouldn't wish on my worst enemy! i wonder if it has something to do with my condition even though my last neuro wasn't concerned with it.