MS like symptoms? Please help!!

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Cait88
New Member


Date Joined Nov 2009
Total Posts : 7
   Posted 11/10/2009 9:40 AM (GMT -6)   
Hi everyone,

I am a 25 yr old female, still don't have a diagnosis, and would really appreciate any advice anyone has to share.

Three years ago I had a bout of strange symptoms that lasted 4 months and then disappeared: electric shock like pains all over my body, muscle spasms (like my right hip locking up so that I would walk with a peg leg), vertigo, anxiety, heart palpitations, urinary problems, occasional slurred speech, forgetting common words, and a tendency to fall down stairs, run into things, drop small objects, and I even noticed that the vitamin supplements, which I had taken my whole life, I was suddenly having trouble swallowing. I was also having a lot of fatigue, which would sometimes come on very suddenly, with a lot of dizziness. All of these things that seemed so obvious and scary to me, were hardly observable by anyone else. My family and friends were relatively dismissive of all these problems and made me feel like I was being a hypochondriac. My GP is the one who suspected MS and ordered an MRI, which showed nothing. I was examined by two different neurologists, who after looking at the MRI results were convinced it wasn't MS. I was tested for Lyme, which was negative. The symptoms eventually went away on their own once the spring rolled around. Every fall/winter however, the stabbing, electric shock pains come back, without any of the other symptoms. This year I began to get the pains as usual, but also had a recent episode - I guess it was a muscle spasm? - in which both my wrists locked in bent position and I couldn't move them. This lasted only about 5 minutes, but was very scary. I had no wrist pain or problems previously or since then. I don't have carpel tunnel or anything like that.

I am very frustrated by all this, and just want to get some answers! I know MS is different for everyone, and I also know that it's difficult to diagnose early on and a neg MRI don't necessarily rule out MS. So I'm a little irritated with these doctors for telling me that I absolutely don't have MS. One neurologist, who I waited 3 months to see actually told me I was just depressed and it was all in my head, and suggested Prozac. I feel so dismissed and angry. Please help!!

Post Edited (Cait88) : 11/10/2009 8:44:44 AM (GMT-7)


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/10/2009 2:07 PM (GMT -6)   
Hi there, yes the symptoms that you are suggesting may be MS, but then again, it cannot be confirmed until at least something shows up on a MRI......I had three of them before my Dx of MS was confirmed, as the previous two came back clean......from what I have learned since then is that u can experience MS symptoms before the lesions actually show up on an MRI...

I can understand your frustrations, as it does become a very frustrating process.....u are not alone when u suggest that friends and even doctors were dismissing my symptoms, ready to write if off as me being overly anxious, or to out it bluntly, going a bit crazy.....

Years ago, one of the ways that they use to confirm MS was to have the patient sit in a hot bath to see if this would bring on symptoms......As with many MS patience, tolerance to any source of heat is not tolerated very well. If I put my hands in hot water, my hands go instantly numb....I did not realize that things like this was happening, until I became cognizant of these things...

Muscle spasiticy is common, and the electric shock that you speak of is called Hermitte's sign....

You will just have to plug away - keep a daily diary of your symptoms, what you were doing - did u get really tired that day, and symptoms surface, did you get too warm, etc etc......

Best of luck on this, but u have to keep them going on this to get u to a final dx. It could be as simple as a vitamin B12 deficiency......

Gary

Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 11/10/2009 2:07 PM (GMT -6)   
Hi there, yes the symptoms that you are suggesting may be MS, but then again, it cannot be confirmed until at least something shows up on a MRI......I had three of them before my Dx of MS was confirmed, as the previous two came back clean......from what I have learned since then is that u can experience MS symptoms before the lesions actually show up on an MRI...

I can understand your frustrations, as it does become a very frustrating process.....u are not alone when u suggest that friends and even doctors were dismissing my symptoms, ready to write if off as me being overly anxious, or to out it bluntly, going a bit crazy.....

Years ago, one of the ways that they use to confirm MS was to have the patient sit in a hot bath to see if this would bring on symptoms......As with many MS patience, tolerance to any source of heat is not tolerated very well. If I put my hands in hot water, my hands go instantly numb....I did not realize that things like this was happening, until I became cognizant of these things...

Muscle spasiticy is common, and the electric shock that you speak of is called Hermitte's sign....

You will just have to plug away - keep a daily diary of your symptoms, what you were doing - did u get really tired that day, and symptoms surface, did you get too warm, etc etc......

Best of luck on this, but u have to keep them going on this to get u to a final dx. It could be as simple as a vitamin B12 deficiency......

Gary

redone
New Member


Date Joined Nov 2009
Total Posts : 19
   Posted 11/10/2009 8:17 PM (GMT -6)   
Cait88,

I read this and almost couldn't believe what I was reading. In the winter of '08 I had a very similar thing happen, it lasted about 3 months total and nothing since, I almost feel as though I imagined the whole thing, but at the time, it was very real. The thing that lasted the longest was double vision, I finally decided to go to the eye dr. and he told me it was medical to see my GP. I ended up at a specialist who suggested I have a MRI because he thought it sounded like symptoms of MS... this scare the hell out of me. MRI came back fine, and I have had none of those wierd symptoms since...I have no idea what happened to me in January of 08, but I even had a strange white line on all my fingernails that grew out by spring.

Red
37 y/o female.
Diagnosed in 2001
Current meds: Entocort, Vitamin D & Calcium
Starting Remicade on November 23, 2009


Donatella27
New Member


Date Joined Oct 2009
Total Posts : 12
   Posted 11/11/2009 6:33 AM (GMT -6)   
Hi Cait
 
sorry to hear of your proplems!  doctors wont generally diagnose without the lesions on the MRI, an attack or your cerebral spinal fluid showing positive for a certain protein.
 
what you can do though is remember there is no cure for MS, and even if you were diagnosed you would only have the choice of one of four injections which only slow attacks and progression by about 46% max.
 
start looking at natural ways to take care of yourself and keep a diary of all your abnoraml happenings, and find a GOOD doctor who is on your side to keep in touch with and report in the strange happenings.  if you eat right, sleep well and look after yourself in the meantime, you'll be doing about as much as all us diagnosed MS sufferers....dont back down or believe you're a hypocondriac, a good doctor will make this so much easier for you.
 
good luck matey!! 
 
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 11/11/2009 8:53 AM (GMT -6)   
Wow Donatella,
 
This is an awesome post.  You have said it all. 
 
Cait,
 
You have some good advice here.  MS is a difficult disease and it is difficult to diagnose.  The current therapies are expensive and their long term use hasn't been proven all that effective.  We have a lot of people who come on here looking for answers and they seem angry because they can't get doctors to say it is MS.  Again, you won't get a diagnosis or treatments until you have lesions on an MRI.  Let's just hope it isn't MS, and you have something much more treatable and less expensiive.  Best of luck.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Cait88
New Member


Date Joined Nov 2009
Total Posts : 7
   Posted 11/12/2009 10:59 AM (GMT -6)   
I appreciate hearing from so many people who have been through similar experiences. I see your point, Donatella, about just living a healthy lifestyle, eating well and exercising. I could definitely be more conscious of those things. I tend to get bogged down with wanting an explanation, or a formal diagnosis, which it's looking like just isn't going to happen. It's hard to get the support you need from friends and family without a diagnosis, because people put so much weight on that. "If the doctors can't find anything, you must be fine, right?" I know what you mean, Red, about thinking it's all in your head... I started to think I had imagined everything too, and then it came back and was so real again.

Anyway, It's nice to know there are so many people on this site to talk to about these things. Thanks everyone.

Cait

beannie
Regular Member


Date Joined Jun 2006
Total Posts : 50
   Posted 11/13/2009 9:50 AM (GMT -6)   
Hi, I am not diagnosed either...but someone said you can't get a diagnosis without lesions on your brain. Well I have 6 lesions and they said I dont have MS. I dont have lymes, and frankly and get tired of being tested for it. I have been going through my dilema since 2001, and nothing. Dr after dr after dr...and I know how frustrating it can be. I even had optic neuri*** twice, was confirmed by a  opthamologist and still no answers. But I just plug along every day and hope that they will figure out what is wrong with me. In my heart I really do believe I have MS, but until someone tells me, I just don't know...thanks and I wish you much luck in your search for answers...Beannie

Heartbroken1
New Member


Date Joined Dec 2009
Total Posts : 1
   Posted 12/1/2009 10:49 PM (GMT -6)   
Good evening to those that are awake and reading these stories/questions.

I hope that there is someone out there tonight that has some compassion to respond to this particular thread.

I am a 39 year old female. I have NO medical insurance, so getting into see a dr and have any tests done in the near future is not an option. So I am on this board trying to find answers, relief from supports and just to feel heard!!

I have been going through the mill over my body going through some changes and it's scarying me to pure insanity. I will describe what I have been going through over the past 5 years (that I can recall).

-Numbness in my spine that had spread across the shoulder blades, eventually spread to my lower back, now as of this month have noticed my neck, up to my nose, both ears and now back of my head is completely numb. I describe it as rubbing my fingers across leather.

-Buzzing of my head (like a constant vibration)

-Headaches everyday, it different places of my head. I'll have tenderness on certain parts of my scalp for no reason at all.

-My limbs will lock up on me for no reason at all and I feel as if I sprained it or moved wrong. It doesn't last too long, but it is scary when it happens.

-My legs ache at night (every now and then) it has a tendancy to ache so bad I have to rub them, prop them up or just cry if nothing works.

-Insomnia forever now. Racing thoughts won't stop or the buzzing in my head keeps me from sleeping.

-Car sickness.

-Feel very weak after showers and intimacy.

-I can hardly read writting unless it's magnified. I can't say it's double vision, because I don't truly understand what double vision is. I don't clearly see two sets of something, what I see is words joined together.

-Dry mouth every morning. I now wake up with cracked lips and tongue.

-I have really bad fatigue (I've upped my coffee intake to keep up with life in general)

-I have sporatic jolting pains throughtout my body. Not everyday, but it can stop me in my tracks and I try to put pressure on the pain area to relieve it (mostly the thighs)

-I've been itching like crazy, moisturizers don't help.

-My muscles (especially my left side) are worthless anymore. I used to be super-mom and carry 5 bags of groceries in each hand. I can't remember how long it has been since I could do that.

-My memory is gone (short term especially) seems to be the most embarassing to accept. I used to love joining in on stimulating conversations, now I avoid them.

-I feel a constant knot in my throat. That sometimes prevents me from being able to swallow my own saliva.

-I have scary episodes where I feel I can't breathe right. Either I hyperventilate or I stop breathing all together (especially during anxiety/panic attacks).

-I have really bad anxiety attacks that have now progressed into panic attacks.

-I trip over my own feet, as if I can't pick my feet up and walk right.

-I have dizzy spells and fall into walls, doors, chairs, tv stands, people, just about anything around me.

-Lack of consentration. I hear someone talking about a subject and I can't seem to make out the whole story to it's entirety. If they ask me questions, sometimes they have to reiterate it or use a simple example for me to understand how to answer. (I feel so uneducated and ignorant now).

-I can't talk clearly anymore. My words come put like gibberish sometimes. I usually laugh it off and say "Wow, what was that? I have no idea where that came from". I try to say something and I either loose the constanent or my tongue just plain goes dead on me. Sigh~ Its frustrating to say the least.

-I cannot handle brightness or loud noises at all.

-My senses seem to have magnified greatly. Sight to lights hurt, loudness hurts and causes confusion, I can smell anything foul from a distance, (anything like strong exhauts or chemicals causes me to gasp for air) and my taste buds are the worst now, food taste absolutely off now.

-Bad chest pain that can bring on an anxiety attack (actually anything now causes me to react anxiously).

-Light headed when I stand for a period of time.

-Impatients, irritability, angry, frustrated, moody, scared...needless to say, I went from the nicest person imaginable, to least person to wanna be around.

-Uncontrollable urination, especially when I sneeze or cough, or just gotta use the ladies, I can't hold it anymore. I have to find a bathroom as soon as the urge comes on.

-Loose bowels-which is new to me. (This is embarassing, but it's a definate change in my lifestyle).

-Menstral is now abnormal (thought it was possible I could be going through premenopause-but thinking it might be something else since I'm only 39)

-Loosing my hair fast (sad face-this is scarying me too)

-Rapid heart rate that feels abnormal at times.

-The worst of all the symptoms I am experiencing is the ANXIETY and PANIC ATTACKS!!! I have an appt tomorrow morning with a psychiatrist to medicate me for anxiety. 2 weeks ago Thurs I was 500 miles away from home, alone, and had a mother of all panic attacks. I had all the symptoms you could imagine, including urinating/diariah at the same time, every 10 mins for 8 hrs straight. I litterally lost 10lbs over it. (I could use to loose 10lbs, but not like that). I had to fly my husband out to me to drive me home. When he layed his eyes on me, he said I was pale with grey circles around my eyes.

Nov 16 was the bottom of my barrel. I called Family and Children Services the following day and made an appt to see a psychiatrist asap. I pulled up every symptom I have and have experienced throught the passed 5 yrs and wouldn't you know it...they kept leading to MS. I am by no means a hypocondriac, and wanna just chalk this all up as stress related. But, the numbness and menstral, and vision, and hearing and taste buds...what can I explain for those?

My question is, once I see the psychiatrist tomorrow do I ask him/her about resources to help me see if these horrible symptoms are stress related or health problems causing stress. My husband accuses me of exaggerating my fears and weakness for attention. That in itself makes me wanna go postal and then comes the anxiety...

Please tell me I'm not loosing my mind...I just want to feel normal again and go about the busy life I once had and enjoyed living.

Heartbroken in Oklahoma
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