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Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/22/2014 12:17 PM (GMT -6)   
Hi, everyone. I've been bouncing around on a few different forums with questions, and I hate to bother you guys. But I have a question/ symptom/ complaint that relates to MS (well, OK, I have quite a few symptoms that do-- but I'm mostly curious about one in particular for now).

I am 26, DX with Fibromyalgia when I was about 19 or 20, I am on no medication, have no health insurance. But it has been suggested many times over by doctors (back when I was insured) that I may also have an autoimmune disease on top of the Fibro. Nothing has ever been confirmed because I lost insurance.

My primary care doctor truly felt I was suffering with MS; I had so many neurological symptoms (too many to sit and name right now). An MRI just 3 years ago or so showed no signs of the disease. I never had a spinal tap or anything. Should a spinal tap also have been performed?

Were you DX by MRI and lumbar puncture?

Anyway, one symptom that seems to wax and wane but has never gone away for a few years now is nystagmus, where my eyes jerk back and forth on their own. I have done some research on it and the exact type that I have is Acquired Pendular Horizontal nystagmus, meaning that it just appeared out of nowhere one day/ I have not always had it, and my eyes jerk from side-to-side horizontally (both eyes at the same time).

After my doctor mentioned it, I have also always read that nystagmus itself, especially the exact type I have, is often associated with MS. How many of you experience nystagmus? I would really appreciate some input on this subject.

Also, the oddest thing about the nystagmus is that it often seems to occur with outside stimuli, such as noises, like when someone opens a door. Can ANYONE relate to this?

My symptoms, pain and problems seem beyond Fibro, and I agree that they seem autoimmune-related. I'm sick of suffering with no clear answers. I could give more info, if anyone is interested, as to how I have many more neurological-seeming symptoms. But for now, I'm very interested to hear from people who have also experienced nystagmus. Because this is one symptom in particular that never seems to go away, it just waxes and wanes.

Any opinions? Thank you so much! I'll really appreciate your input!

Eden :-)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3567
   Posted 2/22/2014 2:56 PM (GMT -6)   
Hi Eden,

I have very mild nystagmus. It is exhibited mostly when I read. I lose my place a lot. I benefit from large print and narrow columns of text. A kindle makes it easy for me to read.

I was diagnosed after multiple MRI's and a lumbar puncture. I also had blood work, evoked potentials and a thorough neurological exam of reflexes, balances and other responses.

I am sorry to hear that you are without insurance at this time. Even with insurance, MS can be a very expensive disease. It is expensive to go through the diagnostic process.

Obviously we can't diagnose you here. All I can do is offer support. I do hope you get answers soon.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3567
   Posted 2/22/2014 3:45 PM (GMT -6)   
Eden,

I read your post in fibro. People with MS are no more liable to get infections than others. The fact that you constantly battle infectious illness would possibly indicate a weak immune system. Auto-immune issues are confused and over reacting. I myself almost never get even common colds. My immune system knocks it down before it starts.

I am very concerned that you are wheelchair bound for basic chores!!! You need to see a doctor in any way possible! Please contact your local health clinic to see what low/no cost help is available.

You should consider posting on the lupus board and the Lyme disease board as well. With all your infections, you may need to consider the possibility of Lyme.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Post Edited (Gretchen1) : 2/22/2014 2:02:59 PM (GMT-7)


Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 2/22/2014 11:29 PM (GMT -6)   
Eden,

I have nystagmus and diplopia. Both started after a bad MS relapse in 2011. My nystagmus is always present but does seem to get worse when I am stressed, mentally or physically. The diplopia can be corrected with glasses, but I've been told there is nothing that can be done about the nystagmus. My eyes bounce vertically. I also have constant vertigo and if I don't sleep well, the nystagmus and vertigo get so bad that I am pretty much worthless. I take sleep medication now and it really helps.

I did have a spinal tap and blood tests, but my first MRI showed 40+ lesions and their pattern was very common with MS so my diagnosis was never really much in doubt. So sorry you do not have insurance. Like Gretchen mentioned, treating MS can be very expensive. I am on Tysabri and it costs my insurance over $6,000 every month! I'm sure they wouldn't charge that for someone without insurance, but I'm sure it's crazy expensive either way.

I started the paleo diet about 5 months ago and it has made me feel better. There is a lady on YouTube that claims it pretty much cured her MS. I haven't had those results, but I do have less "brain fog" and my skin looks much better.

Best of luck,
Frank

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/23/2014 12:32 AM (GMT -6)   
Wow! You guys are wonderful! I'm so happy that you replied. I lack so much support in my life (mostly from family) that I appreciate every single thing that others do for me to try to guide me into the right direction. Thank you thank you!

My life is a constant battle. I literally have NO quality of life anymore. I live in a very small area without many options for healthcare help. I did have insurance through the state (I live in PA) years ago when I became pregnant (they gave it mostly for the baby of course). But I turned out to have gestational trophoblastic disease (a molar pregnancy)-- very rare. Anyway, it's a fancy name for a false pregnancy from an empty/ defected egg. (I think ALL my eggs are defective, honestly, I don't think I am able to get pregnant.

Especially since my menstrual cycle completely stopped a year ago. I did not get it for over 7 months. I had to be put on birth control from Planned Parenthood since that's all I can afford (it's free there). Anyway, I had to get surgery for the false pregnancy so that the abnormal cells did not turn into cancer. And the state took away my insurance even though my doctor wrote them a long note telling them I so badly needed it for my own health. They still took it away.

Back to the menstrual problems, that's another thing that seriously concerned me. Yes, they can put me on the pill so that I get my period again... but I still don't know WHY I stopped getting it altogether. Is that associated with any one particular autoimmune disease I wonder? A complete loss of period? Or perhaps it was just due to the constant stress that my body is under.

Gretchen, I, too, get nystagmus when I read and try to focus my eyes! (I thought I was the only one)! But I also get it when I hear sudden noises, especially doors opening and closing. It's very strange.

I wish that I was able to get another MRI and finally a lumbar puncture (even though that does not sound pleasant)!!!!!!!! I am working on getting health insurance.

Bad Mojo,

I also suffered from bouts of severe vertigo in the past. They seem to come and go. I go for periods without any vertigo, just frequent lightheadedness and dizziness. The vertigo was debilitating for a while. It would last all day long and I could not walk without falling to the ground and hurting myself. I had to stay in bed all day long in a darkened room. I have not had it in over a year *knock on wood.*

I have a lot of issues with my eyes/ vision disturbances.

Gretchen,

I have wondered about LUPUS, as well. It seems as though I can become so crippled so quickly. My severe joint pain tends to be symmetrical now (as of the past couple of years), so I have suspected either Lupus or RA (no one has answered me back yet for RA). I don't want to look like the whacko that goes on every disease forum here though! Lol!

Most frustratingly, I have had a headache for about 5 years now that has NEVER once gone away. It is always there. I know headaches are common in lupus... but really, who has one so bad that it never goes away!? Has anyone ever heard of such a thing? It's just ridiculous at this point and completely ruins my life. I cry every day now.

Thanks so much again for letting me explain things, and even rant!

Eden :-)

Bad Mojo
Regular Member


Date Joined Aug 2010
Total Posts : 70
   Posted 2/23/2014 1:29 AM (GMT -6)   
Sorry to hear about the headaches. That is one area that I cannot relate. I am 47 and I never even knew what a headache was until I was in my 30s. They are still very rare for me. I do suffer from trigeminal neuralgia--a burning/stinging sensation--felt on my right are and the right side of my face. It is always there (it started after the 2011 relapse). Because it is always present, I have learned to block it out. However, just like the vision and vertigo, it worsens when I cannot sleep. I've found a good night's sleep can make me feel so much better! Eating right helps too.

I was in the USAF when I was diagnosed. As I was being medically discharged, I met a civilian coworker who had cancer. He didn't have insurance and he had 5 kids that depended on his paycheck. He was too sick to work--but he did anyway because of his family. Anytime I start to feel sorry for myself I remember him--and I realize I don't have it so bad. I hope things get better for you.

Frank

Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/23/2014 1:47 AM (GMT -6)   
Wow! How amazing! That's a great story :-)

Thank you.

I don't think I would even be so depressed IF I HAD the answers. It isn't necessarily being ill (trust me, I have gotten used to being chronically-ill)... it the fact that I don't have answers-- that's what devastates me and drives me crazy. You know? BUT I wrote on the lupus forum, just as Sherrine had advised.

Wow, trigeminal neuralgia is supposed to be very painful!!!! The problems I have with my face just include lots of pins and needles and numbness only on one side underneath my eye-- it comes and goes. And I have very severe jaw pain and eye pain, lots of pressure always-- especially behind the eyes and at the temples of the head.

Luckily, I have been suggested to see a chiropractor that I just may be able to afford. He is very inexpensive supposedly. I need to call his office. They say he is inexpensive anyway, but he does x-rays, which I would think would be added costs? Also, his paperwork asks what 'other' symptoms I experience... and there are A LOT listed that I *have*! So if he wants to do extra work-up, that may not happen, as I have no insurance nor do I have much money!rolleyes

Let's hope he can help somethin'!

I wonder if anyone has had luck with chiropractors treating an on-going headache? A lot of it seems to stem from my neck and jaw... so perhaps he certainly can help. I hope so!!!

Thanks for everything, Frank.

Eden :-)
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