MS Symptoms, advice PLEASE!!!

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keepnitreel
Regular Member


Date Joined Dec 2005
Total Posts : 68
   Posted 4/10/2007 4:37 PM (GMT -7)   
I am 29 years old, and have been sick since I was 26. I was diagnosed with Lupus last year. I am sure I have it as I have kidney damage, hair loss, blood disorders, etc. I don't really question the dx and got a 2nd opinion too! But.....lately I have been forgetting things like where my Hair Dresser is located. I actually had to call her to ask her what street she was on even though I've been going to her for 5 years. And then it happened again in the same week on my way to the Derm.

But lately I am having spasms in my legs at night, that my husband noticed while I slept through the whole thing. I am also experiencing my hands clenching, and my eyes are flickering back and forth so fast I can't even focus. And it seems to be increasing. If I hold my hands out straight, my right pointer finger moves on it's own and I had Optic Nueritis when I was 7 years old. So I know my chances of getting MS go down the longer it's been since the Optic Neuritis. I told my Dr. about my memory problems and she said, "You're probably just busy and stressed." Well I don't have a job because of the Lupus. I don't have children, and I'm really not as busy as many other women. I am sick in bed with pain about 3-4 days a week. So how can I be busy???

My questions is....Does anyone else have the eye movements and the hand clenching. I know the memory problems could possibly be from the Lupus, but I don't think the other things are. Please help. I am getting blown off as if I am over analyzing every symptom and no one will listen to me. Years ago I had a MRI on my spine with no lesions. I also had a MRI when I had the Optic Neuritis when I was a child and that was negative but I havent had a MRI on my brain in 23 years. Any opinions would be GREATLY appreciated. I know no one can diagnose me, I just want to know if someone who is diagnosed with MS is experiencing these eye problems and the hand problems. Oh, the other day, my leg was dragging too! And a year ago my eye was drooping! PLEASE HELP!!!
SLE (Lupus) Dx'd - Nov. 2005, Raynaurd's - Dx'd Nov. 2005, GERD - Dx'd 2006, Fibromyalgia - Dx'd 2005, PCOS - Dx'd Jan. 2007, Migraines - Dx'd 1995,
Optic Neuritis - Dx'd 1984,

Currently taking - Plaquenil 200mg, Prozac 20mg, Spirnolactone (Aldactone) 50mg, Vit. A

Occassionally take - 1/2 500mg Vicodin (2-3x/wk), Maxalt as needed for Migraines,
Clonazepam 1mg as needed for sleep and muscle pain,
Relafen 500mg as needed for pain, Pepsin for Gerd
Prednisone (for emergency use only)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 4/10/2007 7:35 PM (GMT -7)   

Are you certain you had optic neuritis as a child? That would be pretty uncommon. At any rate, any opthamologist could examine your eyes and see if there is nerve damage there.

Have you told the doctor who is treating you for lupus about the hand clenching, eye problems, and restless legs at night?  Since those are new symptoms, they need to be reported to him. They do occur in some folks with MS, but they can occur for lots of other reasons, too.  Since your MRI's are old, it seems reasonable to request that they be repeated. Perhaps now that you have the new symptoms, the doctor will do that for you.  If not, you could always go to another doctor.

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


keepnitreel
Regular Member


Date Joined Dec 2005
Total Posts : 68
   Posted 4/10/2007 9:33 PM (GMT -7)   
Uhhh, YEAH! I'm sure I had Optic Neuritis. I go to an Opthomologist every year and I am legally blind from all of the nerve damage to the myelin. "It's almost completely white." to quote my Opthomologist. And yes the Dr's. know about these symptoms. I have been telling them about it and they blow me off as if I don't know what I'm talking about or I'm coming up with these symptoms for attention or something!!! I'm not really sure.... But it's questions like yours, that I am getting. I can't go to another Dr., I am with Kaiser. I have been banned from Ins. companies due to my "Pre-existing conditions" and my husband and I are and were both self employed.

I don't understand why people on this site can't just tell you yes they have experienced this, or no they haven't! What's up with you moderators. Do you think we are idiots and don't know what's going on with our bodies? Everyone I talk to questions what I say. Why is that??? I was an olympic hopeful gymnast and a personal trainer before this all hit me. Why would I want to fake this? I have done TONS of research and I know my body better than anyone but there's not one person out there (even here in cyber space) that can answer one darn question. I give up on you guys. Post this or not. I don't care. You guys don't offer any real advice. Just stupid sympathy chats and pitty parties. I am so frustrated. I will probably never come back to this formn again.
Keep it real! mad
SLE (Lupus) Dx'd - Nov. 2005, Raynaurd's - Dx'd Nov. 2005, GERD - Dx'd 2006, Fibromyalgia - Dx'd 2005, PCOS - Dx'd Jan. 2007, Migraines - Dx'd 1995,
Optic Neuritis - Dx'd 1984,

Currently taking - Plaquenil 200mg, Prozac 20mg, Spirnolactone (Aldactone) 50mg, Vit. A

Occassionally take - 1/2 500mg Vicodin (2-3x/wk), Maxalt as needed for Migraines,
Clonazepam 1mg as needed for sleep and muscle pain,
Relafen 500mg as needed for pain, Pepsin for Gerd
Prednisone (for emergency use only)


DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 4/10/2007 9:48 PM (GMT -7)   
Hi ...You sure seem like you are having a rough time. Try seaching on of the search engines on the internet for nystagmus. It is a rapid eye movement and can vary from person to person. It can have many causes. I do understand the memory loss problem which again can have many causes, stress being just one of them. Chronic illness is a stressor in itself. I think you will find that although optic neuritis usually affects young adults and older people it can affeect young children in both eyes (usually) following a viral infection. Again check the internet for reliable sites looking in partricular for articles on optic neuritis in young children. And definitely go back and see your doctor and let him/her know that you are concerned about some of your symptoms. A new Mri is definitely in order. Good luck and we will all hope to hear back from you. Dale

KAS1
Regular Member


Date Joined Feb 2007
Total Posts : 161
   Posted 4/11/2007 12:16 AM (GMT -7)   
Hi there,

I'm not dx...so not sure if I can be any help.

But six months back I had something similar to the "hand clenching" that you mention.....it is one of the symptoms that started my doctors investigations into MS....so I assume it can be an MS symptom. As for the eye flicking, leg dragging and finger movement...my research says they can all potentially be attributed to MS.

I'm sorry that you didn't find one of the responses helpful. I personally find this site to be incredibly helpful, and Uppitycats is one of the people that I feel is most informative and realistic about this conditon. I hope that you find the answers you are after.

KAS

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 4/11/2007 5:22 AM (GMT -7)   
Keepnitreel

I too am sorry u've felt the need to 'go off' on anyone here. We all do understand u'r sitaution...remember???...we're in the same boat. None of our members...moderators or not...are here for the pure pleasure of it all. Moderators volunteer their time...because we care about those who need answers. Our members are great...that includes u. We all need help and we all help each other as much as we can...but we are not doctors and we can't and won't tell u something we don't know. Sometimes asking questions is meant to get info that we don't have. U'r frustrations are heard and felt by the rest of us only because we share those frustrations. BUT...in telling and re-telling our stories we sometimes leave parts or pieces out due to our having told it so many times. It's an error of assumption or omission or whatever u want to call it...but the end result is that the only reason these questions were asked is to try to help u. We all have prior lives...we 'used to be' other things...now we're all ill and we're all struggling too. Please consider this when u feel u need to 'go off' on any member who is only here to help u. Best wishes to u and i sincerely hope u'll decide to rejoin our group as i feel u may have much to add to our stupid sympathy chats and pity parties.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


dopey_adfs
New Member


Date Joined Apr 2007
Total Posts : 5
   Posted 4/11/2007 5:55 AM (GMT -7)   
Keepnitreel,
I totally feel your frustration. I am someone who does not like to tell people i have been dx with MS for the fact I don't want their sympathy or them telling me I can't do something. As far as the memory loss I have not experienced that to the point of getting where I am going. I have the moments of forget what I was talking about. Mine is more concentration problems and spitting out words. I have had the slurred speech (can't remember the proper name). I have been pulled over for DUI. LOL!! That was too funny for words when the deputy actually knew my father and grandfather because they married him and his wife!!! They thought I was drunk for the fact that I had gotten overheated and experienced vision problems. I did not think I was swerving!!
But I do understand the foot dragging. A friend that is a PT refers to it has the "hanging drop syndrome". She was telling me it is similar to a stroke patient. I have actually started going to the gym and trying to keep my muscles strong by doing toning exercises. My problems with my legs usually also happen when I am fatigued. The tingling, dropping of the foot and spasms are my indications that I need to stop and take "ME" time. Everyone else just has to wait. Oh well if they understand or not. Then God also remembers me that "HIS strength is made perfect in my weakness"!!
Dawn

Denda
Regular Member


Date Joined Jun 2006
Total Posts : 329
   Posted 4/11/2007 6:19 AM (GMT -7)   
Keepnitreel -

I didn't reply last night since I have not been dx'd with MS yet. It seems pretty evident it may happen, but haven't heard those words as of yet, but I guess I'll reply now.

I am blind in my right eye. Although my opthamologist (sp?) can't say it was from ON, my Optic Nerve is completely white and 'diseased looking' it was discovered when I was 3, after banging around on the walls and doorways of our home. I've got great pics of the docs trying to 'fix' me with a patch on my good eye, thinking that will strengthen the other eye to work.. Goodness Sakes! It is nice to know that you do have the dx of ON so the docs have something concrete to go back to.

Memory - Yes, I have that. I have worked with the same people for the last 6 years and I'm forgetting their names. I forgot my brothers name all Easter sunday. It was extremely aggravating. I kept calling the ham, meat because I knew what it was, but it kept coming out wrong, so I just stuck with meat. (Maybe that was subliminal... I really would have liked turkey) ;o) I drive the same way to work every day for the last 6 years and over the last year, I'm finding myself every once in a while 1/2 way home and not knowing where I am. I start to panic, pull over or keep driving until I see something that kicks the memory back in. This is just the tip of the iceberg of memory issues!

Hand locking up (clenching?)- I don't know if this is the same as what you are describing as hand clenching, but this, tremors and rt sided numbness is what I initially went to the neuro for. She didn't connect the hand locking up with MS since we had not rec'd my MRI results back yet and just told me I could get botox shots in them if I wanted. :o( My right hand locks up a couple times a month, but not for very long, since I'm not dx'd my neuro has not prescribed anything for it and it's only painful for a few minutes and then it's gone in my case. Over the last couple of months the aching and spasms in my legs, arms and chest have been getting worse and it may be time for me too to get on something. I hate meds, but it looks as though I may have to do something in the next couple of months.

Eyes flicking - I have nystagmus in my blind eye and oscillopsia in my good eye (basically the same thing as nystagmus only adult acute cases). Here's a link to explain the lovely things. http://www.nora.cc/patient_area/balance_illusions_movement.html . I am not on any meds for the oscillopsia, I didn't even think to ask. I don't know if this is the same thing as you describe, however in my case, my eye will start jumping ever so slightly. Just enough to drive you nuts when you are trying to read. I don't notice it as much when I'm not reading, but when it's happening, I can't read anything for a couple hours. I will last a couple days and then go away.

I hope you do come back and read the rest of the posts. I'm sorry you feel the way you do with the forum. I have enjoyed making the friends I have here, you do get sympathy, but along with that sympathy is quite a bit of knowledge and straight forward talk and not to mention everyone elses experiences that you can relate to. I think the sympathy comes from people knowing exactly what you are going through OR saying hey 'did you think of this?' I'm all for getting a dx of NOT MS, however I think all of us need others that are experiencing the same issues just so we know that 'we're not going crazy' like alot of our loved ones or friends think we are (and as you mentioned some doctors) and hope that we can find out what exactly is wrong with us. I too was an extremely healthy person 3 years ago and have been going downhill since... It's not fun, it's confusing on how one that takes good care of their body, physically and nutritionally and still have these types of issues.

Hope this makes sense and I'm not just rambling... Took me about 45 minutes to write, since my eye is jumping around today! :o)
Good Luck.
I not only use all the brains that I have, but all that I can borrow.
  Author: Woodrow Wilson (1856-1924), 28th U.S. President


DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 4/12/2007 5:07 AM (GMT -7)   
Keepnitreel,

I really do hope you come back. Frustration is a big part of this jouney as it is an ever changing one. Denda gave you excellant information. Denda you did not ramble at all and very well put the realties of what many of us are facing everyday. Thank you for your info and what is happening to you. Keepnitreel I hope you will heed Denda true reaching out to help you. Good luck...Dale

Rye
New Member


Date Joined Dec 2006
Total Posts : 5
   Posted 4/21/2007 12:02 PM (GMT -7)   
We are all here for you. I was previously diagnosed with PD and now they think its MS. So I came over to get some much needed info, and advice I really like this board. Thank you. Rye yeah

Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 4/22/2007 7:31 AM (GMT -7)   
keepinitreel,
I'm not going to respond to your comments regarding the board, i am going to say one thing. Don't give up. Keep on your doctors. Insist on treatment, tests, Specialists, etc. Dont give up. Everyone here struggled in limbo land probably for 2 plus years before getting diagnosed (and some of the folks are still in limbo). You have to be persistant. I was like a crazy person sometimes at my doc's (crying, yelling,etc didn't care,LOL). I have a PT background and i knew something was wrong. My pcp made me feel as tho i was just wanting pain meds, etc. I hate taking meds. He made me feel like i was nuts. Well guess what? I finally got to the bottom of it when i stummbled on a 65 year old rhuematologist my mother in law went to with plenty of knowledge in neuro issues. He immediately ordered a brain mri and there it was. MS> No one else even thought to look at the brain with all the issues i was having. Foot drop, leg weakness, my eye was blurry, off balanc.e,etc and my pcp was giving me vicoden for the sometimes low back pain i was getting, Yeah, that helped. Don't give up!I know you said your insurance is froze, however, how about just go to the hospital then? They have to treat you. Maybe you'll come accross a decent doc that can help you?. I was ready to do that i was so desperate for answers. I dont know anything about kaiser but its a thought.Geez if i was in bed 3-4 days a week i would be a maniac. Dont stop looking for answers. You need to have some quality of life. My goodness! wow! Good luck. I really think you should come back to the board, i've made alot of friends here that really care, its nice to talk to people having the same issues as you! Hope to see you again! I look forward to monday chat. The guys/gals are so nice and if anything, you'll get a good laugh! Thats the best medicine
Stay with it girl!Your too young to not be havin any fun! Anything i can do to help let me know!
Lynn

Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 4/22/2007 12:32 PM (GMT -7)   
I'm mad with frustration too. Have the hands clamping but eased greatly on PD drugs. Also vision difficulties. Oh, meant to refer to other things mention=ed and now I have forgotten em!
I too am having a hellova time trying to get doc to 'hear me'.
I have white specs on my brain seen a few years ago but put down to brain trauma such as Rubella as I am a rubella baby.
Ann
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream

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