need more advice from doctor about symptoms

[sally456]

Dr.:

I posted before about obsession with ms, however i left out important details and need advice.
i told you i had bladder problems where i had a very uncomfortable feeling like had to go all the time, even after i emptied bladder. Sometimes these feeleings of pressure would radiate into top of legs.  Also, more recently, I have had hesitancy..in morning (1st urine only) once or twice and also urgency; needed to get to bathroom fast. (approx. 7 times)   had yrs ago & in past few months-paresthesia (tingling, burning, strange sensations of water dripping )all over body even in head. burning in back of legs (thighs only)usually starts in one spot on back of right thigh, and radiates to back of both thighs-It has been on/off for approx.1 month.  Also feeling some twitches in my back..they are few and but there none the less.  have night sweats for many years and never feel rested when i wake up.  I have numbness on the tip of one toe for several years and just recently numbness in tip of right index finger. (very mild).also knee cap some numbness.
Normal mris done back in 1991 as was spinal tap.I mentioned before my vision problems which ive had for 5 years now. I woke up with distorted vision..sometimes still due when awaking from a deep sleep...my vision in both eyes is streaky when something moves fast across vision field (like waving hand in front of face), vision in the dark is bad,
many floaters for many years, left pupil dilates more than right. Should i have new mris? what else could cause ongoing paresthesias? much anxiety now over marital problems as well.

[CCF-Neuro-M.D.-PW]

As you know I cannot give you a formal medical opinion over the internet

While anxiety and worry can contribute much to symptoms, this can only be confirmed by a face to face consultation with a neurologist.

In general, urinary symptoms caused by MS come from MS lesions in the spinal cord. These areas lie very close to the leg motor nerve fibers, so if you do not have physical signs of a myelopathy in the legs (ie hyperactive reflexes, a babinski upgoing toe response) then the urinary symptoms almost certainly not due to a spinal cord problem and the problem may lie in the urinary apparatus itself ie chronic cystitis/urinary tract infection etc

Good luck

[Citizen T]

Try not to focus so much on MS.  It is a rare disease.  However, since it has been 15 years (right?) since you had an MRI then I would say it's worth while to repeat the brain MRI with contrast.   Keep in mind that people with MS often have optic neuritis as a first sign, and what you described doesn't really suggest that, however a good eye dilation and exam for glaucoma is an order.    As far as the leg pain/numbness, you may want to consider problems with your back such as spondylosis,  also just for the heck of it get a Lyme disease titer (only Elisa is necessary).

[tricia ann]

I am not sure why they put ms I need info on a archnoid cyst.I was told that I had one over a year ago and it is killing me like you can't believe.I have the cyst in the right midline posteria fossa and it is 2.2x3cm and it is just growing and growing and I am not sure what is going on.I feel like someone is pounding my head and I forget alot of times and the mood swings are horrible.I the feeling in my legs and there are many other things going on that are there is anyone that is going through this please tell me more for I do not know very much about this and my doctor says there is nothing he can do but pain management.Is there something that can be done for this?I know that at times I just want to die and my head feels like it is getting heavier by the day and is that normal?I feel like there is no hope is there?

[ozark]

have you seen your dr about your urinary issues...it sounds more like a urine infection and possibly kidney...you need to see someone to rule this out first

[sally456]

About another mri--I guess ill see if the forum dr. recommends it.  would you think if someone like me had ms, by now there would have been more signs???

I am so scared to go to another neurologist..it almost paralyzes me because im too scared to be diagnosed.. I know it would help so id stop torturing myslef, but i just keep thinking that if i do have it, something eventuallyw ill happen where i HAVE To go to a dr. and then ill have no choice but to get another mri.

I know, sounds crazy.

[Citizen T]

I very highly doubt you have MS.   But, again, the MRI is sensitive to detecting MS.   MS is a disease which causes physical changes in the brain.  Even  If (which you probably dont) you had MS all this time, it is aparently the benign form.    Are your symptoms disabling or do they hinder you from living a normal life (other than the constant worry?)?    If not, the best thing to do is enjoy every day and be glad you're able to

[sally456]

thank you...just what i needed to hear..now, can you help me with my marrital problems!

[nobodysp]

I walk in your shoes on the urinary problems. it is hell. The pain, the urgency, the emabarassment, because who can you ask for advice? I too have had these problems for many years off and on and after having had a real infection and knowing what it felt like, I was in complete shock the first time the test came up negative when my symptoms were extreme. Have you considered Intersitital Cystitis? It took years for me to bring myself back to see a doc and get diagnosed. I am only now going to try for treatment because the pain has become unbearable. Although there is no cure, there are some effective treatments. I would suggest that while you are working on figuring out your neuro problems you seek help from a urologist as well. There is no need to suffer. Anyway, I have no advice on the other problems you are facing, I just thought there is a very good chance you could have this condition. Your description certainly sounds right. you might want to look at www.ic-network.com

[sally456]

so sorry dr. to keep bothering you, just wanted to tell you again my symptoms started with bladder at age 21, at age 23 had chicken pox where one eye became cloudy and had mris done at age 24, i will be 39 next month.  
Also, wanted to ask, were mri's done accuratly back then? ANd also, it was the ms specialist at columbia presbyterian who told me i didnt have ms.
Could it be a mild case of ms? and could the lessions just not have shown up on my mris?  
How can i get on with my life and stop worrying that i may or may not have ms?
Thank you so much doctor..you dont know how much a reassuring word from  neurologist can help me.
Can other things cause all of my symptoms?

[sally456]

my original post if you want to refer to it was on 2/22..ms or not what should i do???
THanks.

[sally456]

Yes, I thought I might have IC, so I went to a urologist about 7 years ago and was tested, but the urologoist said I didnt have it.

[nobodysp]

Do you mind if I ask how he/she decided that, when IC is mostly one of those "rule out" type diagnosis?  Lately though, they have come up with a few more likely ways of ruling it in. They can do a bladder distension which should be done under anesthia because it hurts - on the up side, it can help with symptoms for a few months and there are signs they can look for such as hunner's ulcers and , and other things they can rule out at the same time (such as important stuff like cancer). Have you had that done?

Anyway, second opinions never hurt. I just went for one.  The doc I went to years ago called it urethral syndrome and sent me on my way without treatment. it went away for a copule months and came back. 4 years later i am exactly where I started. Even without a diagnosis, it might be worth trying one of the therapies suggested, or maybe gabapentin/neurontin. It did not work for me. Neither did Zonegran. I tried  them for the other nerve problems, but sorry to say, they didn't work for this either.  

Well, good luck, with both kinds of docs if you decide to follow up, anyhow I know your misery. you are not alone.

[Gold24kt]

Hi! I encourage you do go to another neurologist if it truly has been 15 years... you will definately have Peace of mind!
You will get to the bottom of everything & find out if there really is an underlying medical condition or if it may just be a strong manifestation.
I believe you will find the answers you need this year one way or another. God Bless you, my prayers are with you :)

[sally456]

Yes, I went in to the hospital and had the procedure done under anesethisa....You didnt? Thats the only way to diagnose it...
I went to one dr. who was een going to put me on the drugs for it, without even knowing I had it or not...I guess he thought i did..but hes not the one who performed the procedure...maybe you should get that procedure done, if thats the only way to confirm the diagnosis.

[sally456]

I know, I shoould go..im going to see this neurologists comments and then Ill decide...i have so many other problems in my life right now, i dont kow if i could handle a dx of ms right now.  but i guess theres never a good time.

[pazman1]

Sally, Have you ever though that your marrital problems are sub-consciously stressing you out, that they are the cause of all your symptoms?

[sally456]

yeah, i have thought about that...
Do you think that could really happen?

[sally456]

Does anyone know about the with dye/without dye mri for diagnosing ms???
If i had mris in 1991...im guessing they didnt use the die, but i have no recollectin if they did or did not.

[noners]

Hi,
I'm hoping someone out there can tell me if they've had the same symptoms as me and what they were diagnosed with.
I am a 45 year old female, living in montana, i smoke cigarettes, drink pepsi, and am a grade setter for a road construction company, so I carry a heavy bag on one shoulder and pound stakes in the ground and walk all day. ( just a little background).
2 months ago after a day of working in the pouring cold rain, i woke up with numbness and tingling from the bottom of my feet to my knees. The next day it was to the top of my waist but not as intense. Went to dr. They did mri with and without dye of brain and one of neck. Bright spots on brain, saw neurologist, says they arent consistent with MS. Then the buzzing started and the numbness is very little, only in feet somtimes. But the buzzing is in legs all the time, I have L'Hemittes sign, and buzzing inside my body like when gasses move through my stomach it buzzes. Never in my arms. Also in my head sometimes, my face sometimes, and sometimes if I stimulate an area like scratch my face it will buzz. Went back to nuerologist, he did lumbar puncture, all neg. Looked great. But now I'm stuck with the what is it? I walk fine, see fine, but I guess I'm just looking for the answer to what has caused this. I do have scoliosis and a bad back. They also MRI'd my lumbar and said it had a small bulging disk, but that is not the problem they're sure. Now testing for heavy metals, but seems like a shot in the dark. The L'Hemittes sign worries me, because all I read about it says its mostly from MS. Any ideas please help. I dont know if the doctors on this sight read these but if they do I would love to know your thoughts. I'm new to this so dont even know if I'm supposed to ask questions here. Thanks for any help.

[pazman1]

Yes, if you are unhappy and depressed this can cause severe hidden stress that could affect the absorption of minerals and B vitamines that will have a dramatic affect on you nervous system. Maybe this stress in manifesting itself as the symptoms you are experiencing. If the marriage is making you unhappy, then its time to do something about it. Remeber, you only live once, you might as well be happy. You are young enough to have a new beginning if that's what it comes too.

[sally456]

Hi pazman--
After reading this forum it seems like so many people have undiagnosed symptoms like mine...Whats going on?
All of these neuro symptoms and all of the tests come back negative...
Is it that ms is a wait-and-see diagnosis most of the time
..time will tell...
so some people have to wait 10, 15, 20 years before symptoms start showing unless they keep pursueing it with dr. after dr after dr...
I think i should just do what i was doing before all my problems started....stop worrying about it and just live my life...
sometimes things cant be diagnosed...sometimes you have to wait and see--but i cant keep going to dr to dr and i keep keep on dwelling..i feel good right now so i need to just move on...and maybe someday ill know for sure what it is..maybe i wont.
Whats your del anyway?? what are your symptoms?

[jan]

The idea of Interstitial Cystitis came to me, too.  I have IC.  It can be diagnosed based on symptoms alone according to Dr. Parkins and also, by a potassium sensitivity test.

A great site for IC is:  http://www.ic-network.com/  Check out the patient handbook.  (There is a Yahoo support group, too.  http://health.groups.yahoo.com/group/interstitialcystitischronicpain/ ).

As far as the MRI's, they should use the dye.  It would be beneficial if they did the spine, too, as some people will have the lesions there.

[jan]

That's Dr. Parsons, not Parkins.  Sorry, that's part of the cog dysfunction here.

[who_is_this]

Clearly, your admitted obsession with MS is ruling and ruining your life.  Now you have added marital stress.

From everything you say and have reported, you have been comprehensively evaluated and not diagnosed with MS.  It may be time to consider counseling to get to the root of what you really fear.  I say this with all the best wishes to you in the world. The mind can do awesome and terrible things to you, when anxiety and obsession come to the forefront.  

A good, compassionate therapist my give you more help than all the "tests" in the world.  Testing has not eased your mind in the slightest so far.  It is doubtful "tests" and more tests ever will.  You have a great and deathly fear of a rare illness.  This is not a normal preoccupation.

[sally456]

Hello, who is this.

Thanks for your comment.  
Yes, I am obsessed with it right now, but its because i have 2 major symptoms of ms---bladder problems and vision..
along with the tingling, numbness, burning sensations that also are sensory symptoms..
I do hope and prey i do not have it.  I was only told by one ms specialist i dont have it, because my tests were normal..but there are so many people on this forum with normal mri's and spinal taps..it makes you wonder if you just have to wait a long time for things to show up on tests to diagnos MS.

If I do have it Im hoping its benign or a very mild case.
I am currently in therapy and on Effexor.  Hopefully mentally, I will feel better soon.

The stress and depression from my marital problems brought on the symtpoms of tingling, burning, etc.  But they say stress also brings on MS symptoms, so how do you know if its stress, ms or something else??  

Thanks for listening and for your advise.

[many questions]

Hello, my question is the following. I went to a neurologist because my only symptom at the time was a vertigo that was bothering me.The vertigo was usually around my period but then would stick around mildly through out the month. I have never lost balance and passed all the neurolgical test she did in yer office. Before my visit to the neurologist I had all kinds of blood test, eye doctor perfect vision, went to an NTE doctor and finnally got a ct scan which came back normal. When I went to the neurologist they had an MRI with contrast done and it also come back negative. But my concern now is that I have tingling in the bottom of my feet and tingling in my hands occassionally. And sometimes numbness in the tip of my fingers. I am very anxious with this problem to the piont I dont stop thinking about it and my question is should I do a lumbar since all the test have come back negative. Can it be anxiety the tingling because I didn't have it until after I saw the neuroligist and she mentioned tingling as a side effect. Please help. And if the lumbar comes back negative ,if i do it, is that a definite diagnosis that I do not have ms.

Thank you

[sally456]

hi..

you need to have an mri of brain and spine..did you have both?
Tell the dr. about the tingling, and see what she says...tingling could be from anxiety, and it could be from other things...

If mri and spinal tap are normal, then it is very unlikely you have ms, but it seems like they can never rule it out, unless they find something else wrong!!!

I had negative mri's and spinal tap, dr. thought i didnt have it, but now i have more symptms..too afraid to go back to dr. i made an appt though...maybe ill go ..i have a little bit of time to think about it.

Good luck and let us know!

[bengalcats]

I have an arachnoid cyst too, I was told a few months ago but was told not to worry about it, i was also told that i had the cyst present on an MRI in 1999 but they never bothered to tell me i had it then. i DID SOME RESEARCH ON IT AND THEY DO NOT SEEM SERIOUS, MINE HAS NOT GROWN IN 6 YEARS.