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MS symptoms, no diagnosis!!
by Gaucho25, Jul 14, 2009 10:17PM
Hi, I have been reading this forum and its quite interesting. Some posts date from 2005.. and I wonder if those people ever got diagnosed with something since they never posted back anything.
In my case, I was working one day (july 31st, 2008) i suddenly became incredibly lightheaded, confused,felt really slow and couldn't process information correctly, I felt like I was drunk. The next day I experienced dizziness that lasted 11 days... Sometimes I couldnt keep up a conversation because I would get lost, I would forget what the conversation was about etc... I remember I couldnt read anything because I would completely forget what I was reading about. It was horrible!!!.. When the dizziness went away, I still felt a chronic brain fog, I had to think too much to do everything, even go to the market and buy groceries would be a hard task to do. Also remember chronic headaches, pain behind my eyes.
Today, July 14, 2009 (almost a year later) I have other symptoms like back pain (upper spine, near neck), pins and needles all over sometimes, tired upper arms...sporadic muscle twitches, chronic back contractures, burning sensations on skin in different areas of the body, sometimes my left pupil is larger than the right one, sporadic headaches and eye pain, one of my nuckles of my left hand bothers me, as well as my right wrist...(this has been going on for the past 3 weeks)...sometimes i feel sort of lightheaded and tired... and a few times I exerienced a vibrating sensation in my hands and feet.
My visual symptoms never went away since last year... they consisted in an increment of floaters, moving little dots (look like sperm swiming), i notice afterimages after i see fast object such as hands waving... I feel like it leaves a short image after it moves...it is weird and hard to explain. Also at night I see halos around lights with my left eye...not always, sometimes, and it doesnt not correlate with a headache afterwards or before. When I wake up in the morning I feel like my eyes are really swollen and as I open my eyes I see a ''vein'' shape that goes away as I blink.
I have gotten an MRi of my brain done in October 2008, then another one of my brain AND neck Dec 2008, another one of brain April 2009, and one of my brain AND whole spine June 2009. EVERYTHING came back normal, except a hypersensitivity in the C5-C6 area, which may be due to a contracture. Blood tests done (regular ones) all came normal. A tomography of my eyes(optic nerve) this past month and it was normal too, also they had me do something called Visual evoked potential (had 2 done, one in Dec 2008, another one April 2009)...they were normal, and a visual field test which was also normal... so so far neurologists, ophtalmologists, neuro-ophtalmologists say that nothing is showing up!!!! It has been a year and I still feel not-good, these weird sensations sometimes bother me so much that I feel im going crazy...really... can this be a type of virus?? or may be a parasite?? I found a cat on the street and I adopted it, but I waited 3 months to take it to the vet...could it be realted to that? All neurologists I have seen are saying it isn't multiple sclerosis. Some tell me I should go to a psychologist!!!!!! i JUST KNOW it isnt related to that. But what can it be since everything so far came out NORMAL?????????? I am not imagining my simptoms!!!
Please help...and if someone experienced these symptoms and got diagnosed with something please let me know, I am so anxious!!!
In my case, I was working one day (july 31st, 2008) i suddenly became incredibly lightheaded, confused,felt really slow and couldn't process information correctly, I felt like I was drunk. The next day I experienced dizziness that lasted 11 days... Sometimes I couldnt keep up a conversation because I would get lost, I would forget what the conversation was about etc... I remember I couldnt read anything because I would completely forget what I was reading about. It was horrible!!!.. When the dizziness went away, I still felt a chronic brain fog, I had to think too much to do everything, even go to the market and buy groceries would be a hard task to do. Also remember chronic headaches, pain behind my eyes.
Today, July 14, 2009 (almost a year later) I have other symptoms like back pain (upper spine, near neck), pins and needles all over sometimes, tired upper arms...sporadic muscle twitches, chronic back contractures, burning sensations on skin in different areas of the body, sometimes my left pupil is larger than the right one, sporadic headaches and eye pain, one of my nuckles of my left hand bothers me, as well as my right wrist...(this has been going on for the past 3 weeks)...sometimes i feel sort of lightheaded and tired... and a few times I exerienced a vibrating sensation in my hands and feet.
My visual symptoms never went away since last year... they consisted in an increment of floaters, moving little dots (look like sperm swiming), i notice afterimages after i see fast object such as hands waving... I feel like it leaves a short image after it moves...it is weird and hard to explain. Also at night I see halos around lights with my left eye...not always, sometimes, and it doesnt not correlate with a headache afterwards or before. When I wake up in the morning I feel like my eyes are really swollen and as I open my eyes I see a ''vein'' shape that goes away as I blink.
I have gotten an MRi of my brain done in October 2008, then another one of my brain AND neck Dec 2008, another one of brain April 2009, and one of my brain AND whole spine June 2009. EVERYTHING came back normal, except a hypersensitivity in the C5-C6 area, which may be due to a contracture. Blood tests done (regular ones) all came normal. A tomography of my eyes(optic nerve) this past month and it was normal too, also they had me do something called Visual evoked potential (had 2 done, one in Dec 2008, another one April 2009)...they were normal, and a visual field test which was also normal... so so far neurologists, ophtalmologists, neuro-ophtalmologists say that nothing is showing up!!!! It has been a year and I still feel not-good, these weird sensations sometimes bother me so much that I feel im going crazy...really... can this be a type of virus?? or may be a parasite?? I found a cat on the street and I adopted it, but I waited 3 months to take it to the vet...could it be realted to that? All neurologists I have seen are saying it isn't multiple sclerosis. Some tell me I should go to a psychologist!!!!!! i JUST KNOW it isnt related to that. But what can it be since everything so far came out NORMAL?????????? I am not imagining my simptoms!!!
Please help...and if someone experienced these symptoms and got diagnosed with something please let me know, I am so anxious!!!
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Most folks have come to the conclusion that it would serve their best interests that they get evaluated by a psychologist to disprove that theory. Then you can continue seeking treatment and diagnosis without that label which is supposed to explain everything you experience. It can be a terrible blow to be viewed as a psych-case when your symptoms are very real and disturbing.
There are several other diseases that mimic multiple sclerosis. Have you read about those yet? Lyme disease, lupus and other autoimmune dysfunctions can cause similar symptoms seen in MS.
Have you been seen by a rheumatologist or other specialty physician?
Please read our "Health Pages" if you haven't already. The yellow icon can be found on the upper right hand corner. You will find invaluable information there.
I hope this helps you. Your symptoms do sound neurological in nature. How good is the health care in Argentina? Can you go to specialty doctors as you with?
Any of you guys that experience the same things as me and have been diagnosed with something please respond.
Good luck Karen. Have you been diagnosed with something?
'My visual symptoms never went away since last year... they consisted in an increment of floaters, moving little dots (look like sperm swiming), i notice afterimages after i see fast object such as hands waving... I feel like it leaves a short image after it moves...it is weird and hard to explain. Also at night I see halos around lights with my left eye...not always, sometimes, and it doesnt not correlate with a headache afterwards or before.' this describes my right eye to a T. I also get double vision or jumpy right eye on and off, do you?
Try to get the lyme test done. It should be ruled out anyways in cases where MS is in question.
Good luck and feel better :)
I am currently in the same boat as you. My Lyme, Lupus, thyroid etc tests came back negative but I still have yet to get another MRI (last one I had was 2003 when I was 18 and couldnt walk from lower back pain ende dup gettign cortizone injections, pain went away then came back, then went away came back etc) I just went to the Dr. for severe neck pain and trouble inhaling with this pain in my neck and back. I have physical therapy for my neck again tonight but it seems to be making it worse. I'm not sure what is wrong with me butlike you, I feel off in a way that I can't describe and I also see auras sometimes too, which is odd, mostly around peoples bodies but it's weird like I try to focud on their face while they are talking to me but then there is a sort of yellow-whitish glow a few inches around their head and shoulders. Not sure what that is form but I also know what youre talking about the little sperm floater thingys I get those sometimes too but someone told me "oh everyone gets that sometimes" I'm not sure what to do anymore and its so hard not to worry I get upset and frustrated when people say "oh dont google your symptoms just dont worry about it til your next dr appointment etc" it's frustrating! I hope everything works out for the best though.
I am in the same situation i have had two clear brain MRI and have very simular sx to you in the end i was given a dx of fibromyalgia though my GP fills there is more going on then this and i have been refered again to a neuro hospital but to a neuromuscular consultant this time as she feels this cant be MS with clear MRI but i have read this is not always the case its so frustrating.
sam
Skarey: I will try to get a test done, I believe that sometimes it comes back negative (normal), but in the beginning... right? I have been feeling like this for a year almost, it should show in the blood or CSF, correct? Do you have any idea how you got bitten by a tick? And if it is Lyme, are my symptoms going to get better ever?? In regular bloodworks, the lyme antibody doesnt show unless the dr specifically asks for a lyme test, right?
UK2 (SAM): Hey sam, have u had a visual evoked potential? Anyway, how did everything start in your case?
CityChic1985: I understand how frustrating it can be, specially when they think you are making a big deal out of nothing since the results come all negative.. in my case, the swiming sperms are there 24/7 not sometimes...Devic's disease is more commong among asias from what I read, r u asian? besides that, since it is a demelynating disease it has to show on the MRIs...its unlikely (not impossible) that one has that disease and wont ever show on the MRI, my opinion...
Tomorrow I have an appt with a neurologist and I will force her to do a Lyme test.... I am tired of having to wait 2 months for a Dr to say ''You are fine!!!!" while i feel like ****... it is frustrating.... I just want a Dr to perform a bloodwork or whatever and to check for every single bacteria (including lyme), parasite, virus, etc so I dont have to go regularly for different tests...
Thanks for the replies guys, and keep posting... also post if you guys ever get a diagnosis!!
I've read that Lyme will consistently come up negative and is your other test are normal, i'd say Lyme. Sometimes people go undiagnosed (even though they've had lyme blood test like 6 times all neg) and then when they have trouble breathing and other more serious lyme signs they diagnose it. (frmo what I've read anyways)
And no I am not asian, I am American (mix of german, swedish, irish, native american, spanish anscottish probably more haha USA is a melting pot right?) I just thought Devics because I was reading about it online. I'm not a doctor obviously. I've been having difficulty inhaling all last night and this morning. it's actualy quite scary it's like I have to try realllly hard to get a full deep breath and this feeling comes and goes but its lasting into the morning which usually doesnt happen I'll get that feeling at night and a tightness in my chest and back and it usually subsides by morning...
I've noticed this tightness in my back and difficulty breathing for a few months on and off. Sometimes the back pain that accompanies this is just horrible and other times the back pain is mild.
I am in the process of getting a referral to the Mpls Clinic of Neurology, but my doc doesn't seem to think that they will find anything. I have been told depression and anxiety, yet my doc doesn't think that I am depressed.
I just continue on the journey and talk to my friends on the forum. It's the only place I feel that I'm sane.
The weird sx started in the summer ‘07, the heat seemed to drain most of my energy and strength. once I cooled down it went away (I wish that still worked, but at least the sx reduce) Then the "spinning" spells began, just a few seconds to a minute then go away. It feels like someone has spun my internal compass very lightly at 1st now I’m dizzy for days/weeks at a time and heat makes it worse. This last Dec I had a very bad flu (3-4weeks) with fever (102 for most of it, 105.4 F degree for 2 days). I recovered from it (I should have gone to the hospital) ever since then I’ve been stuck on this roller coaster from h*ll.
A few weeks later, I felt tingling sensation from my right cheek to just above my right eye. Then I started seeing spots and kind of like a red-green film with bright white spots along the edge in my right eye vision and it seemed to get darker with my right eye open. My left eye was normal. If I close my right eye, the light level returns to normal. I started to get dizzy, like spinning. Then my side vision for only my right eye went hazy then black for about 45 minutes. Luckily, everything went back to normal for about a month before new sx appeared. I brushed my right hand against my blue jeans and it felt like a very soft blanket. It took me a little time to relies I didn’t have a soft blanket on, and ½ of my ring finger and pinky were numb mixed with pins and needles along the wrist, forearm, and upper arm (underside). It comes and goes. I went to my doc on 3/11/09 I told him what was going on. I was thinking pitched nerve like CTS or something like it. My doc told my to pay attention to my arm and see what sets it off, when I go to bed keep my arms straight, and I’ll see you in 2 weeks.
On 3/19, I had stinging pain in my right forearm around the bone and pins and needles on the skin layer. My skin on my right arm is very itchy around my right wrist, elbow, forearm, and hand. If I moved my arm, the muscles felt as if they were being shocked and torn. The next day, the pins and needles spread to the whole hand. ½ of my wrist and my forearm went numb and the other half felt like there was a dagger twisting along with electric shocks. My right hand seems to have some weakness and have a hard time holding things (cup, pen, etc.). I couldn’t straighten or rotate my right arm without sharp, stinging; tearing pain with an electric shock (it reminds me of grabbing an electric fence).
This electric pulse goes up my arm into my spine, muscle spasm follows this, and this pulse usually goes down to my legs. This sx is mainly on but it does go off-pain wise. My Right forearm hasn’t felt normal since. I had a test for my arm, that dr thinks that 2 of my muscles are pitching the nerve CTS. I disagree, CTS affects the thumb, pointer, middle, and ½ the ring finger. The other ½ of the ring and pinky and numb/delayed forearm is my problem and they are controlled from a different nerve which he said nothing wrong with it.
I stared get more new sx on 4/3/09 I still have numbness in my right forearm arm. My feet feel off: numbness or pain at the right heel, ankle feels sharp pain w/weight. Its feels like it following a nerve. My legs stared to feel heavy around noon. I feel off balance when standing or walking. I felt an electric pulsing threw my spine and legs. It seemed to spike when I moved. Typing makes ½ wrist (side w/thumb on right hand) has shape and stinging pain the other half feels numb. Around 5pm my fingers feel pins and needles or numbness; I can barely feel pressure. I have the same symptoms with my left hand, but not as bad.
Once in a while, I get this weird painful thing in my ribs, shoulder and blade. It hurts to lift my arm. it feels like the muscle has turned into metal and can't move. it hurts and hard to get a deep breathe. I don't know whats going on. I call my pcp to make an appointment, but I have to wait and by the time I get in the rib/shoulder thing is gone.
Welcome. You may have to do the psychiatrist visit just to get this elephant out of the corner of the room. Once you are declared mentally stable the doctors can be asked to go back to looking for answers. Many people here have had to do this just to prove to the doctors they were not making things up in their heads.
LymeDisease jumped out at me too - the majority of Lyme patients don't remember tick bits. There is a great Lyme forum here at medhelp. You may want to talk with them as well.
my best,
Lulu
Let me ask you something, how are you dealing with the treatment? r u feeling better?
see ya!!!
about 8-9 years ago, I did have mri's and a spinal tap they came out clean. but these were done years before what ever this is started, at least there will be something to compare to future mri's. I had multible lyme disease test 6-9 yrs ago, and there is no way I could have it. I haven't been bitten by a tick in over 20 yrs. lyme, among other mimics, had to be ruled out to get a fibromyaigla dx.
I mistakenly blamed other conditions for these weird sx and didn't tell my doc. they started so suttle and were infrequent, so I ignored them. this last Jan, they came back very strong and new sx came this time too. I was in denial and was trying to blame conditions even though it didn't make sense to myself. after 3 months, my right forearm acted up and I couldn't blame any known conditions. I had been writing a timeline for a few months, so I read it. I called my pcp and told him whats going on. He agreed with me, whatever this is its NOT any of my known conditions.
I hope this helps
good luck.
I'm due to go to the neuro psychiatry dept in London (UK) for an assessment and then a months inpatient multi-disciplinary thing. 9 month waiting list...so you can imagine I'm having a fun time in the meantime. Positive thoughts and lots of calm deep breathing and yoga lifestyle. housebound and being cared for by my partner. recently able to use the pc which is fab (i have sensory issues too)
Anyways...thanks to you all for posting on here. let's keep each other company and I will do my best to let you know what happens when I get a correct diagnosis. Currently they think it's non-organic and as i read on here...I'm wanting them to rule this out, so am going through the loops. Will look again into Lyme's disease. Thank you.
I really wholeheartedly wish you all some okay moments and some smiles.
Peace and thanks...a huge thanks...
Tanjarine
PS...hoping that this makes sense...need to rest now.
All the best and wishing your answers arrive soon
Tanjarine
You might want to check out the Lyme forum here at medhelp - they are a very smart group when it comes to this disease. We know them pretty well because MS and Lyme mimic each other's symptoms in so many ways.
stay in touch here too - we like to know answers .....
Lulu
Standard labs that test for lyme are NOT accurate. I recommend getting tested by a specialty lab that specializes in tick born disease. IgeneX is the most recommended. They test for more bands than standard labs and they have a more detailed report that shows exactly which bands are positive.
The lovely people on this forum directed me in the direction of lyme and taught me that lyme symtpoms are almost always systemic (all over) and can literally effect every part of your body. Where are MS is usually in a more specific area or one sided.
If you have questions come join us in the lyme forum. There are a lot of very knowledgeable, helpful members there that can help.
Good luck.
I have to agree with everyone above who felt that Lyme disease may be the culprit here, even though no one can diagnose anything online. Many Lyme sufferers do not remember a tick bite.
In the event that your doctors do not have the means of obtaining a Western blot for Lyme, it might be appropriate to have a trial of antibiotics. I know this is often done here when the suspicion is very high, but the testing is negative. I think it would be a very good idea to visit the Lyme Forum here on MedHelp and see what they say.
I hope this helps.
Quix