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Old 03-03-2010, 03:40 AM   #1
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LP Testing? Various Symptoms?

This is a little confusing to me. I signed up on another board. I do not remember where... (another issue!)

I have a nurologist that is seeing me for chronic pain management.

Here is a list -
Swollen Optic Nerves (both) swollen for over a year now
joint pain/stiffness
fatigue - bone numbing -
temp control issues, either I am cold or hot. Usually cold
Showers kill me - I get dizzy and sick to my stomach - and they hurt
double and blurred vision
tingles in my three outer left toes and some of my fingers
head pain (all of the time)
ringing in the ears (most of the time)
I range between sweating like a horse or not being able to sweat and overheating
doing dishes makes my hands feel like they are on fire - weird.
red is a horrible color. But only when written on signs. Boards, whiteboards, street signs - Might just be my eyes.
hair falls out -
memory issues / concentration / thinking (might be topamax too)



I have had 2 weird episodes in the last few months that landed me in the ER with slurred speech and unexplained nurological problems (unable to write, grip, walk, ect) they assumed stroke both times and treated as a stroke both times. Both times, stroke was ruled out. For a week I couldn't really use my left hand, my left eyelid felt droopy. Both times after the non strokes, the resudial effects stuck around for about a week to two weeks. I felt completely drained as if I had a baaadd infection for about 4 days.

The first nurologist I had told me that "its just a headache" but I know that headaches do not make symptoms stick around. After the first episode I asked when I should be concerned to call his office and he said I shouldn't have to call his office. So I switched to a Nuro who would be willing to investigate.

I did a little research and found a nurologist that was quad certified for serveral nuroligical specialties. He took a good look at my MRI films and found several white bloops he was concerned about (I couldn't see them later..guess they can work their magic on the computer screen!) The report labeled them Non Specific White Matter. So did a spinal test for ms. The lp came back negative. But he is telling me and there may be permament nerve damage to my optic nerves and to my nerves of my legs and arms....

In the ER the doctor asked if I had any other episodes like this in the past - I had. Once in High School and one other in between 2000 and 2001, I do not know if he relayed that information to the dr or not... I can assume not. Should assume not.

I am on a really high dose of Topamax at present time 200mg a day that the previous dr put me on to get my head pain under control to hopefully get the swelling of my ON under control. I have to say, finally at 200mg a day.... it is better, but not that much better. So the new nurologist is going to wean me off the Topamax and put me on another to hopfully see if it is the Topamax becuase my MS test came back negative.

I feel almost like doctors are looking at me like I am making things up. I am afraid of telling them everyting. I am going to get commited. I am just worried. I just hurt all of the time, I have zero quality of life. People are having to pick up the slack for me, luckly I am a stay at home mom, but my job is still needed... and I am not doing so well at it right now

If you have gotten this far, thanks a lot....

 
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Old 03-03-2010, 05:08 AM   #2
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Re: LP Testing? Various Symptoms?

Hi there. I got thru your post...but I had a couple of questions. You said "becuase my MS test came back negative." Can you explain that?

There is no ONE MS test. I know you said you had a LP which was negative, but negative for what?? LPs are given to rule out some infections- it can also be used to find out if the patient has OBands, which suggest auto-immune disease, however more then half the people who have LPs have no Obands, and yet still have MS. So, im hoping you arent referring to the LP when you say MS test was negative.

You also said that there was an MRI taken, with nonspecific white matter. Thats a fairly normal thing for an MRI to state. How long ago was it taken? And, was it of your brain and Cspine- was it done with contrast? MRIs can change from day to day. They normally request repeating them about every 6 months until you are dx...then, yearly - to look for changes.

You also mentioned a quad specialty Neuro....was MS one of his specialities? In all my years of investigating Neuros- they usually specialize in either ALS/MS or MS only.....or they specialize in migranes, or Parkinson's. Then, you have your general Neuro who does alittle of everything....which isnt a bad place to start- if he actually has patients who have MS (or whatever disease you are trying to investigate).

the reason Im asking you all these questions is because you definately have something Neurologic going on. Your symptoms are exactly the same as most MS patients, keeping in mind that no two cases of MS are exactly alike, so no one will have your exact symtoms...but in general, you have MS-like symtoms. the Optical Neuritis you have is scary....the color Red is being affected by the ON. Have you been treated for it? IV solumedrol is the treatment of choice to reduce theinflammation and restore the color vision.

You need to find yourself a good MS specialist, someone who can either dx or rule out MS- and give you the correct tests and really get to the bottom of this. There are sevearl diseases which mimic MS and present the same way, including Devics, which I would also not rule out without further testing. Is it possible for you to start over, taking your test results to a new Neurologist, and asking for another opinion?

I wish you well. You sound like you are in allot of pain, and Im sure axiety levels are thru the roof. You definately need a good doc, who you can trust and help you get thru this.
N
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Old 03-03-2010, 06:14 AM   #3
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Re: LP Testing? Various Symptoms?

The nurologist did a set of several tests for MS - Sorry, I didn't get all of that out He tested for several things in the spinal fluid. I think 4.

I actually have had several MRI's taken (about 10) over the last year due to trying to figure out what was causing the ON with and without contrast - The Nurologist I have now stated while reviewing the films that these were in too large of numbers to be normal for my age unless I had been in a tramatic situation. (which I haven't) - He counted about 8 bloops. I don't think they were big enough to be "counted" as something for MS though or anything else. One that is by my eye, left eye I think is - It is labeled "Single Focus of T2 hyperintensity within the left frontal lobe white matter" "the diffusion weighted images demonstrate no evidence of recent infarct" - But once again .... I think it would be labeled something different.

The first nuro only did migraines and sleep apnea. I am currently under the care of a nuroloptomologist - have been for a year. almost pointless to go. They dilate my eyes and then tell me my optic nerves are still swollen and then tell me they have to see me in a month to a week depending on my pressure in my eyes. My last appointment they told me that this is just going to be a chroinc pain issue. Red has always been a issue for me. I can see red just fine, I just have issues reading red, so I pass all of the color tests and such just fine... so the "flow chart medicine" checklists are fine.... lol. I have had zero treatment for the ON. Just the opticnuro guys poking the little lights and making click the remotes... herding me like cattle and such.

You are right. I am in constant pain. A lot of it. I grow impatient everyday from doctors and antiseziure drugs, knowing I don't have sezuires. I want someone to find out why my optic nerves are swollen and my body is rejecting itself it seems But I also have to remember that I just started the pain mangement route of this battle 3 short months ago.... so I have to get the nurologists time to think and process, so just becuase I have been in pain for years and avoiding dealing with the issues, I need to be nice to them!

But, at least with this nuro, he is going to take me off the topamax, put me on a different medication to hopefully control the pain levels and then if the weird pains do not go away he is going to do nerve conduction study test to make sure I do not have nerve damage. I know there has got to be a way to see if my eyes are permanalty damaged too right? Swollen for over a year, they have surely taken some sort of long term damage, right? Hopefully not....

Last edited by monkeymom; 03-03-2010 at 06:17 AM.

 
Old 03-03-2010, 02:54 PM   #4
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Re: LP Testing? Various Symptoms?

Hi Monkeymom. Boy, do I feel for you. Ive suffered with ON three times- the first two times, they did not put me on anything but a dose pack of Prendisone. Although it did help the pain for a short time, the ON returned. At that point, I was also referred to a neuro-opthamologist, who also performed many of the same tests you talk about- and he ordered me IV Solumedrol for 5 days....its basically the same thing, but instead of swallowing pills (about 30 mgs reduced each day until you do only 5 mgs) I had 1000 mgs a day of the stuff shot directly into my vein. Let me tell you- besides the steroid side effects, I never felt better AND my vision cleared up, my color blindness subsided and best part- it hasnt come back again. I still see that guy every 6 months, he does the same tests- from the clicker to the dialation to the pressure- but so far, so good.

so, Im confused! Why havent they suggested trying something like this for you? You really should ask....its the usual treatment for Optical Neuritis. Im no expert, but there must be a reason why they havent done it for you- Id be curious to know...as for is it permanent? I dont know. I do know that ON is swelling of the optic nerve, and something is causing it. There is a disease called Devics, which closely mimics MS- that should be investigated also.

Im not a huge fan of pain management, however if you have seizures, then that is a differnt story. Of course you need to have that managed. You say you have had all the right tests (It certainly sounds that way) but are you seeing the right doctors? There is a piece of this not quite making sense....has anyone spoken to you about MS or Devics Disease? Has anyone sent you to a specialist to rule both of them out?? Your symtoms sounds suspiciously like both diseases.....

please, since you seem to like this new neuro, get some answers about why he isnt putting you on IVSM and whether or not he feels that exploring MS or Devics is worth it....there must be a reason, but for the life of me, since you havent been offered anything that answers these questions, make sure you get an answer! Looks like you really are your own advocate and youre going to have to push-push-push! No one should live in the pain you are in....I really hope this Neuro helps you. ill pass along a prayer for strength for ya! Let us know what he says, ok?? when do you see him?
Nikki
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Old 03-04-2010, 07:01 AM   #5
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Re: LP Testing? Various Symptoms?

Actually, this nuro did mention with the bloops on the mri and the symptoms that he wanted to run the MS panel. I started doing my own research on MS when I started googling my ON and symptoms and of course did not like what I saw. The previous Nuro did screen for auto immune, but it was inconclusive, he did not dicuss this with me. I pulled my own test results and googled them. He is also the one who checked my thyroid levels. I have hypothyroid... But I have had that for years. Sleep apena, but not severe just 1 apnea and several hypanpneas, RLS (200 something movements and hour), ADD - so this isn't just one case.... unfortunatly... I am thankful however that this nuro is willing to try new things and test me and actually look past the first few lines of the MRI report and scan the images himself. Order the tests and take me off of meds that don't seem to be working as well as I had hoped. I do worry that it is possibley still MS. I know that a "negative" lp means almost nothing, but a postive one means a almost definate - with everyting else. But I am optimistic.

When I came into his office I was on 200mg a day of Topamax for head pain control - My ON was still present and so was the head pain. The migraine Nuro I had before put me on Malxalt a migraine pill, that doesn't work for me at all. (don't suspect they are migraines, they don't go away!) - and Nuroten for my RLS.

Now the plan is -
I am off the RLS meds. - (only 600mg a day) because the impeed weight loss.
He is going to taper me off the topamax once I am at a theraputic level of a new med he is starting me at - lamotrigine - it too is a anti sez drug but he wants to see if the nerve problems go away. If they do not, he is going to order a nerve conduction study to see if there is nerve damage. From there.... I have no clue what that means. But at least, at least I have a road map to steer with instead of "mmmmm" I ll see you in 6 weeks.

Do you think it would be too much to document to tell him about a couple of big nuro events that happened before the topamax? One was in High School I lost the ablitiy to talk, my tounge swoll and I couldn't lift my arms for several hours if not days. I was not taken to a dr or hospital... no clue why. And another was in 2000 ish I had such severe vertigo I could not stand or see and was vomiting, scared out of my mind I called 911, my lips were tingling, my hands were tingling, once the paramedics arrived, they ran simple tests on me and assumed I was diabetic and even though my blood sugars were fine they thought I was still having issues and took me in... it was deemed I was deydrated and had an ear infection... sent home. Now looking back, and after all my research, (what little I have done) these are possible nuro events that need to be brought up. I know they may just be hersay. But, they may lead him to see what it might be. I know there are millions of things it could be. Hubbie even jokes that they could be finding a new diease and be naming it after me... isn't he the jokster.

But I can be working toward a solution as long as I have someone who is willing to communicate and work with me. I know with the brain, everyone is different, everything is different. It's not like a knee, elbow, back... its complicated. When you add in how someone percieves how they "feel" - geez, that just throws everything else to a whole new level.... because for so long we are made to look like crazies if we tell a dr how we "feel" - they just tell us...

you are tired becuase you have 4 kids....
you are tired because you need to sleep more....
you achey becuase you need to workout more....
your hair is falling out becuase you....
you have a headache because your body is addicted to tylenol (yes...that one was one used too!!)

I have a million reasons why doctors have told me why I need to or why I don't feel the way I do, so it is hard to tell someone how you feel. Unless its a therapist, even then, it is hard.

My EX Mil just got Dx with MS. So of course with my weird symptoms, she is concerned.... but doesn't have the classic symptoms of MS to start with, so with her, she had a LONG road to the DX. I do not know a whole lot of people that know of hers. I know my daughter doesn't, she wants to keep it that way for now.

I thank all of you for answering questions, even though I don't have actual MS, just the weird symptoms. Such a welcoming bunch! I looked for a board for just general nurological stuff... but this is the board that fit my symptoms the best.

I will be searching for a new optonurologist - I live in a large metro area.... I am sure there has got to be more than ONE of those hanging around!! After a year of having this ON, it is time to see what can be done. I too am surprised that nothing has been done. After all of my reading, steriods, short term even actually are the best option for it to prevent long term damage. I know they are not "that" swollen in their eyes. Or at least that is how they are acting. They did state one time that they optic nerves (in the reports, not to me) almost were hypertensive?? - weird. I just know it feels like my eyeballs want to explode out of their sockets all day long, most nights I can't sleep... getting old!

 
Old 03-04-2010, 02:58 PM   #6
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Re: LP Testing? Various Symptoms?

Hi Monkeymom- sounds like you have it all under control with knowing what you need to do. You dont post where you live, and of course you dont have to, but if you want to- let us know what city you are in/ near, and maybe we can give you some good referrals for docs...up to you.

The comment bout your husband naming a disease after you made me smile- at least he has a sense of humor! The question you asked about whether to tell your doc things that happened so many years ago= thats up to you. Most docs wont consider something over ten years ago to be important, but if its IMPORTANT TO YOU, then you should share it with him.

It sounds like you did find someone who is willing to communicate and work with you, for that Im happy for you. Keep with this guy and see what comes next...its a good place to start! And Im also happy to know you feel welcomed here= thats kind of the point, isnt it?

Stay well...and keep us posted.
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Old 03-04-2010, 03:07 PM   #7
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Re: LP Testing? Various Symptoms?

I live within driving distance of the DFW area. So any of the surrounding areas would be ideal. To me, a great doctor is worth a drive. (for a specialist) - If I needed to be seen for a cold or something... that would be a problem... but it seems I am seeing more specialist than I am regular doctors... so I might want to reconsider... hmmmmm...

Just having a doctor that will talk me thru his idea is making my nerves feel soo much better. The pain is still there, but knowing that I am probably not just going to flop over from a stroke or some weird thing is making me feel a lot better. Besides, who wants a nurologist who raises one eyebrow and says hmmmm and then raises an anti sez med and says see ya in six weeks... I don't like external confusion from my doctors. I don't care if they say "I don't know what this is, let me investigate." - but not the external confusion.

Maybe there are some optonurologist hiding in the DFW area....

 
Old 03-04-2010, 03:18 PM   #8
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Re: LP Testing? Various Symptoms?

Monkeymom- I have heard quite a few good things about a Dr. Rosa Ana Tang, M.D. who is a Neuro-opthamologist in Dallas area...you could probably research her and get more info.

Ive also been hearing an awful lot of good things about the UT Southwestern Medical Center's MS center..its in Dallas. I have a sister in Dallas which is why Ive researched the area more then once...Ive spent months in that area at a time.

I agree that exernal confusion is not easy to handle. We have enough on our plates without docs who confuse us!! Sounds like you found a good one- go with it and see how it turns out. Youre on the right path!
Nikki
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Old 03-04-2010, 03:33 PM   #9
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Re: LP Testing? Various Symptoms?

Quote:
Originally Posted by monkeymom View Post
This is a little confusing to me. I signed up on another board. I do not remember where... (another issue!)

I have a nurologist that is seeing me for chronic pain management.

Here is a list -
Swollen Optic Nerves (both) swollen for over a year now
joint pain/stiffness
fatigue - bone numbing -
temp control issues, either I am cold or hot. Usually cold
Showers kill me - I get dizzy and sick to my stomach - and they hurt
double and blurred vision
tingles in my three outer left toes and some of my fingers
head pain (all of the time)
ringing in the ears (most of the time)
I range between sweating like a horse or not being able to sweat and overheating
doing dishes makes my hands feel like they are on fire - weird.
red is a horrible color. But only when written on signs. Boards, whiteboards, street signs - Might just be my eyes.
hair falls out -
memory issues / concentration / thinking (might be topamax too)



I have had 2 weird episodes in the last few months that landed me in the ER with slurred speech and unexplained nurological problems (unable to write, grip, walk, ect) they assumed stroke both times and treated as a stroke both times. Both times, stroke was ruled out. For a week I couldn't really use my left hand, my left eyelid felt droopy. Both times after the non strokes, the resudial effects stuck around for about a week to two weeks. I felt completely drained as if I had a baaadd infection for about 4 days.

The first nurologist I had told me that "its just a headache" but I know that headaches do not make symptoms stick around. After the first episode I asked when I should be concerned to call his office and he said I shouldn't have to call his office. So I switched to a Nuro who would be willing to investigate.

I did a little research and found a nurologist that was quad certified for serveral nuroligical specialties. He took a good look at my MRI films and found several white bloops he was concerned about (I couldn't see them later..guess they can work their magic on the computer screen!) The report labeled them Non Specific White Matter. So did a spinal test for ms. The lp came back negative. But he is telling me and there may be permament nerve damage to my optic nerves and to my nerves of my legs and arms....

In the ER the doctor asked if I had any other episodes like this in the past - I had. Once in High School and one other in between 2000 and 2001, I do not know if he relayed that information to the dr or not... I can assume not. Should assume not.

I am on a really high dose of Topamax at present time 200mg a day that the previous dr put me on to get my head pain under control to hopefully get the swelling of my ON under control. I have to say, finally at 200mg a day.... it is better, but not that much better. So the new nurologist is going to wean me off the Topamax and put me on another to hopfully see if it is the Topamax becuase my MS test came back negative.

I feel almost like doctors are looking at me like I am making things up. I am afraid of telling them everyting. I am going to get commited. I am just worried. I just hurt all of the time, I have zero quality of life. People are having to pick up the slack for me, luckly I am a stay at home mom, but my job is still needed... and I am not doing so well at it right now

If you have gotten this far, thanks a lot....
Sounds to me like you LYME Disease...100% see an LLMD...Roy

 
Old 03-04-2010, 06:19 PM   #10
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Re: LP Testing? Various Symptoms?

How would I know if they have tested me for lyme's? I know I had a ANA test done. Several others run too. I have those test results. I am not opposed into looking into anything at this point! Don't you get lyme from getting bite by ticks? I do not recall getting any tick bites. Although I do have dogs and cats. They do not have ticks though.

Guess I need to google that one further

I would think they would have already tested me for lyme.. but who knows.

 
Old 03-04-2010, 06:55 PM   #11
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Re: LP Testing? Various Symptoms?

Quote:
Originally Posted by monkeymom View Post
How would I know if they have tested me for lyme's? I know I had a ANA test done. Several others run too. I have those test results. I am not opposed into looking into anything at this point! Don't you get lyme from getting bite by ticks? I do not recall getting any tick bites. Although I do have dogs and cats. They do not have ticks though.

Guess I need to google that one further

I would think they would have already tested me for lyme.. but who knows.
Lyme test are not reliably at all.You really need to do lots of research on your own.Your reg. Doc is not going to help U. Search the web - TEST ME!!!!! Roy

 
Old 03-05-2010, 10:23 AM   #12
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Re: LP Testing? Various Symptoms?

Should I just ask the nurologist then for the test?

 
Old 03-05-2010, 10:34 AM   #13
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Re: LP Testing? Various Symptoms?

You should ask your neuro if he is familiar with Igenex, a lab where he can have blood work sent- which has a high rate of getting the results correct (the first time) however, quite honestly, your symtoms sound alot more NEUROLOGICAL then Lyme. Sorry to disagree with the other poster. My husband's daughter has Lyme- we went thru the entire "does she have MS, too?" thing- we searched high and low for the best Lyme Literate Doc in NYC-I learned way toooo much about Lymes Disease and the differences between it and MS. They do present alike, initially- but the long term of Lymes, is its completely different. Listening to your story- yes, its a good idea to completely rule out Lymes, but youve been going thru this long enough that Id be hardpressed for a doctor NOT to have seen signs of Lyme by this time...but, for peace of mind, ask him about Igenex. You can get more info by looking into that on the Lymes Board as well...
Nikki
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Old 03-05-2010, 11:02 AM   #14
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Re: LP Testing? Various Symptoms?

Thats sounds good... I will present the idea... I will then watch to see if what he does improves or doesn't improve... I do know I have a 2nd nerve defect either deveolping or deveolped. (why I am at the nuro now) - the first nuro found it, I read thur his paperwork. I also have major blind spots with the right eye and a T2 Hypersomething on the white matter on the left fron lobe (don't have that pulled out either) I think I put that in my post earlier. But I know the right eye is having issues and the left is having double vision. (why I have taken myself off of driving) - and found a new nuro. - To hopefully get to the nerve end of this really really quickly. So that maybe this swelling can go down. A year is too long for them to be swollen.

In my ER visits, they gave me something for the pain I had, Dilulid in the IV.. it made all of the pain in my body go away exept the pain right above my left eye. I didn't know if I could walk or not I was in such little pain. I knew I could move, but I haven't felt so little pain in so long I well, just didn't know what it felt like. I walked fine. Is it possible that all of my body pain that I have is related to nerve pain? Do people just walk around normally everyday not in pain all of the time? As if they were teenagers? I just thought being sore was part of being 30 something and having kids... but I have been sore for well, since I can remember... Like I have been lifting weights or running, muscle cramps aches and pains.... are those normal people every day pains? Or are those normal nurological pains I should bring up? Will I be just whining? It hurts to walk all of the time. When that medication was in my system, I didn't hurt. I was fine to walk. My body didn't ache. Aren't I supposed to feel like that normally??

Sorry to go off on a tangent. I just wonder if that is nurological too. I know the face feeling and the hands not working and the eye thing is... the leg shaking, back twitching could be, but the constant pain?? Maybe I am just getting old??

 
Old 03-05-2010, 12:04 PM   #15
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Re: LP Testing? Various Symptoms?

Monkey, youre in your 30s, Im in my early 40s. I feel that way most of the time, too. But honestly, its NOT supposed to be 'that" bad....I really believe alot of what you are describing is neurological.

Dialaudid is a really strong drug- you wouldnt want to be on it all the time, believe me. Youd be addicted in no time flat, and that is no way to live...but the simple fact that you felt so good on it, points towards nerve pain. So, anything is possible. Continue doing what you are doing- please look into some answers. I think, if you did a round of IVSM- youd feel a whole lot better..but you need to talk to your doc about that.

im thinking of you!
N
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