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428506 tn?1296557399

Five Months

Hi Everyone,

This is admittedly a self-centered, pity-party post.  This is long, I know.  I'm looking for ideas and opinions on my situation, which is just confusing the heck outta me!

My "condition" first appeared as fleeting spurious bizarre sensations about a year ago.  They slowly built up, and in January, I had what I considered to be an acute attack that lasted about 1 month.  I then returned almost 100% to normal, but only for around 3 weeks, when my condition re-appeared, with srtronger and more numerous symptoms.

That was on March 22nd.  Today is August 22nd.  Whatever "this" is, the current episode has now endured 5 full months.  TIngling, burning, & pain, largely in my face, hands, and feet, vision disturbances (mild double vision, eye pain) ear pain (more on right, but both eyes).  Weird reflux and swallowing problems.  Weird cramping in my right leg that I can't stretch out, I get a ball in my calf sometimes for a week at a time.  I get occasional jerks and twitching.  Again, all started as little odd feelings that I would never have seen as early signs of what I now experience.

Every day, for 5 months.  Things have not been constant, somedays my legs feel ok but my face is on fire, other days my arms are sore and burning from the forearms down and the inside of my head tingles.  I've had near constant difficulty concentrating, and can not determine if that is a symptom in and of itself, or a reaction to the other symptoms.  All of my symptoms get worse when I lie down.  The harder the mattress, the faster I experience stronger symptoms.  If I get up, I improve quickly.  Not that I feel good when upright, just less bad.  

I've been taking neurontin for a couple of months and it takes the edge off.  I just finished a course of prednisone and it helped, but didn't knock this stuff out.

I've had 2 brain MRIs, one in Feb, a 2nd in July, both with and w.o. contrast.  I have ~8 lesions, two of which are "not small," but they did not enhance and are apparently not of size or location specific for diagnostic purposes.  I had an unremarkable c-spine MRI w and w.o constrast in Feb.  I have a normal neuro exam.  I had 2 rounds of blood work, Western blot both times was neg for Lymes.  I had an LP.  I did not get the results for banding at my last appt, but all of the other levels were normal.  

As I've shared before, I have been trying to eliminate possible sources of my condition by adapting a healthy lifestyle.  I exercise everyday, I eat well, am losing weight, quit smoking, quit drinking, stopped all art. sweeteners and lots of other stuff back in April.  During my quest for answers, I spoke with two psychologists and 1 psychiatrist, none of whom felt my condition was of emotional origins.

I've been told that my nerves "somehow" got set on hypersensitive, and I need to wait for them to calm down.  The neurontin was supposed to do the trick.  When it did not, I tried the prednisone.  Again, it helped, but whatever is happening is still active.

I have no appts. set up until a neuro follow up in Octobor.  I honestly think that whether this is "nothing" or "something" is going to take time to resolve.

What I'd like to ask is for people's opinions.  I know some of the forum members have been around for awhile, and I would especially like to request your thoughts.  In particular, I wonder what you think about the duration of my current episode, especially since it came on only a few weeks after my first attack that really got my attention and brought me to the doctors.  

My neuro has told me that I am in a "gray area" in terms of symptoms, history, and MRI.  I really do understand that I may need to wait, and I also understand how lucky I am that this COULD all just stop one day.  I know a lot of you don't have that.  I know I probably don't have MS, but I guess looking at the calender and realizing that almost 100% of 2008 has been spent like this... I dunno.  I try to keep upbeat, and focus on my weight and fitness goals, but I AM CONFUSED!!!

Any thoughts or reactions, I'd greatly appreciate it!

(And for all of my West Coast Forum Friends, I'll be thinking of you even more, as I head to CA tomorrow for work.)

Thanks to all.  I think it's always tough for me to reach a milestone (like one more month of ???) and I am so lucky to have this place to comfort me.  I really believe that people who use tools afforded them have an easier time through life.  Being able to let my guard down and feelings out here is certainly an avenue that's helped me tons through this!
12 Responses
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428506 tn?1296557399
Thank you for taking the time for the replies.  Reading what everyone said has helped me assess my situation.  I do want to stay out of the neuro office until my follow up (of course, I reserve the right to edit that decision...)  But I think I will return to my physician to discuss symptom control.  

First I was told that a month of neurontin would "re-set" my nerves, then when that did not work, I was told the steroid would "re-boot" my nervous system.  While they gave me a leg up, I don't feel "re-booted."  Sho, I agree that I am starting to feel like they are just placating me but it is not far removed from hysterical woman syndrome.

In addition to asking about symptom control, I think I will ask about anti-fatigue medications.  I have not slept well through all of this, and some days it feels like my legs were dipped in concrete, or like gravity is pulling harder on me than the rest of the world.  I have low stamina, no matter how well I try to eat and care for myself.  I can't imagine how much @ss I'd be draggin' if I was still eating lots of junk!

I would not say that I am left in a lot of pain, but I am left unable to work at an acceptable level.  Again, I can't tell for myself if my lack of concentration is a symptom in and of itself, or just a reaction to all of the other nonsense, but either way, I need to see some improvement.  The fact that I need to be job hunting this fall means I really need to get myself pulled together.

People are great to support my efforts.  I really shouldn't take too make credit, though!  I've lost 34 lbs so far, but I am still obese.  And I should have quit smoking before this came along and scared me.  

I hope I get through this trip ok (I'm on another work trip til Wed).  Physically and emotionally I feel kinda shot, but hopefully I can put on a good face.  I think I'll take a day off when I get off, not that I can really spare the time off, but I think I need some "Wonko time" to recoop...

Again, thanks for giving me your thoughts.  I really do want to learn some meditation or similar relaxation methods.  I don't think I am depressed, but the last couple of weeks I feel like I am too close for comfort to that direction, and know the slopes are steep.  Hopefully by being aware of the risk I can pull myself away, with the help of the great people here!

Thanks again!
Helpful - 0
333672 tn?1273792789
Five months I can relate to. Also, "hypersensitive nerves," which is what neuro #1 told me was my problem the last time I saw him. It sure sounds to me like some kind of 19th century hysterical women's disease, but whatever. He also said my neurological exam was "in the normal range." Six weeks later (and as far as I could tell my condition was unchanged) I went to a new neuro who did more tests and eventually worked his way around to a dx of MS.

Back to the five months thing. I have not had prominent relapses and remissions, just what seems like very gradually worsening or plateaus. Nevertheless, my current neuro seems to think I have RRMS. In early to mid March I started feeling like I was more rapidly getting worse after having been mostly stable so I thought, "A-ha, here it is. A relapse. And this time I'll pay attention."

But I just kept gradually getting worse. And I kept looking for this remission that's supposed to come after the relapse. Nada. So it's been five months of increasing struggle for me (although still not bad compared to what so you and many on this forum go through). However, all of the sudden on Wednesday, I was walking better than I have in months (though not as well as I did pre-March). This seems to be keeping up (sometimes for a day or so I seem to be getting better, but it turns out to be some combination of wishful thinking and mirage so I've found it better to withhold judgment for a while), although I did fall last night for the first time in a while and unfortunately crashed into the window and broke off the ends of a couple blinds. But I am surprisingly happy just to feel less bad. So it can happen.

When I thought I had idiopathic peripheral neuropathy, I used to hope that it would idiopathically just get up and go the way it idiopathically just up and showed up. It didn't.

I'm not sure with MS at least that anyone can say if things are going to get better, worse, or stay the same. Even if it's had a pattern before, who's to say it's going to keep going that way. I don't think anyone can predict. Which is both maddening and hopeful. And I can't say that I've found the secret to striking a balance between hope and realism.

I admire the way you've really turned your life in a different direction by developing so many healthy habits. I am still struggling with trying to eat better and the exercise thing is a bit doomed at the moment.

I hope you do find some answers and names for your problems.

sho
Helpful - 0
429700 tn?1308007823
If you have 8 lesions, this is more than slightly abnormal (and two bigger ones to boot).  What you are experiencing sounds typical for MS to me.  I've never really kicked the head tremor that started in February (it comes and goes since the symptom was introduced).  The only atypical thing would be the presentation of the new attack so close to the other one.  You don't think that it could be the continuation of the same attack?  You did mention that you had several symptoms a short time later, so I guess that may not be the case.

I wish I had questions or ideas for you.  I think your best bet is still with the MS Specialist.  It sounds like you've had all the tests for ruling out the other reasons for the brain lesions.  To me, the obvious is MS, because I don't think someone your age (smoker or not) should be getting brain lesions and everything else has been ruled out.

Best wishes, sweetie.  Nighty night.

Deb  
Helpful - 0
428506 tn?1296557399
I am not 100% sure of anything!  My current neurologist told me that this could still all go away and never come back.  The only real finding in my mountain of tests is my slightly abnormal brain MRI, but since it has not changed (btw. Feb and July), and since the lesions did not enhance, it is not strong evidence.  If it is MS, it must be an unusual presentation.  I do have a lot of sensory symptoms, and heat sensitivity, but I am not sure how many other conditions I could fit.  

That is also why I repeated some of my history and symptoms, and asked people about the duration of this attack that started so soon after the first one.  I do still feel that something is going on, but it is just not yet clear, and am open to and interested in people's ideas.  

I am in a "break" right now from doctors, but if anyone has an idea for a question I should ask or a specialist I should see, then trust me, I'm making an appointment ASAP!

Thanks again for all of the support.

Helpful - 0
429700 tn?1308007823
I'm curious as to why you are sure it's not MS.  Except for the ear pain, I have all the symptoms that you have.  For me, many times a symptom is introduced, it will persist for a very long time and have sometimes never go away.  Sometimes the symptom will reappear and disappear on and off throughout the day.  

Like my sister who also has MS, "Some days you fee sh*tty and other days you feel sh*ttier."  I think that's the best description of MS is like.  I'm sorry to be negative--please forgive me.  

You're doing a great job at keeping a positive attitude and trying to keep yourself as healthy as possible.  This is really important and I think helps when going through what you are going through.  Hang in there.  I have a feeling you'll get some answers.

Deb
Helpful - 0
428506 tn?1296557399
Thanks everyone, for coming to my pity party!  I appreciate the encouragement that I am handling my situation pretty well.  If this was a sentence, then I would know how much longer I'd need to hold together.  But of course, I just don't know day to day what to expect.  Since my first "attack" came and went in a month, I just keep thinking that any day, things should improve.  

I guess I realized that I've been telling myself "just one more day!" for months now.  I think I need to adapt my thinking so that I don't get disappointed.  

I know too there have been some insightful posts recently about the issue of working while in Limbo, and I think I need to start thinking more carefully about that.  For a long time, I thought I would get better any day, and then catch up.  Well, I think I am past that, and again, I need to adapt and figure out how to handle my work situation and the job search I am supposed to be undertaking...

I had work trip from which I returned on Wed, which was very taxing, but I was still on prednisone.  I leave tomorrow for another trip to CA til Wed, and I am worried about how I'll do, esp. now that I'm finished with the steroids.  I think my anxiety about this is also kindling for my current state!

Yes, I hired the world's smallest violinist to keep me company through the night!  I really do appreciate the kudos, I always was the approval seeking type and I do like to get those gold stars.  (Silly, I know, but at least I know myself!)  

I do think I want to try meditation or something like that.  I keep reading how others have benefited.  I admit, I used to be more close-minded, but if nothing else this experience has really taught me to take better care of myself, to try new things, and not to give a **** of what anyone thinks.  

Thanks again!
Helpful - 0
405614 tn?1329144114
Dear awesome young woman,

Let me tell you once again how much I respect the great strides you've made, your positive attitude, your determination.

Your quest for wellness through lifestyle changes reminds me of a younger me! :o)  I was proud of myself, and am very proud of what you've accomplished.

I know that you have been cleared as emotionally healthy.  I also know that it is hard to maintain that through months on end of dealing with rotten symptoms.  You already have a great support system in place.  

The only thing I could think of to add to your wellness plan, is something for your spiritual/psychological well-being, like meditation or tai chi or something of that sort.  Try googling the words "radical acceptance".  All of this can help with pain issues, and can help ward off any emotional fall-out.

I bring this up because it has helped me in the past and I'm trying to remember to pull out these same skills, dust them off, and use them to help me through this wearing limboland marathon dance I'm going through.

Many Hugs,

Kathy
Helpful - 0
Avatar universal
I agree with everything Wanna said!!!  It sounds like you are doing everything you can for your health including dealing with the most aggravating drs.

I don't know why your symptoms have not let up over the 5 months.  My symptoms started years ago and for the last 2 years, have been ongoing without relief, with the occasional new symptom.

I am also in the wonderful world of limboland, but currently not seeing any drs.  My heart goes out to you for all that you have been through and continue to suffer daily.  

Again, like Wanna, I don't have any answers, but I will be here to support and listen.  Praying for answers for you.

Hugs
doni
Helpful - 0
Avatar universal
You know if something is wrong.  You know how you SHOULD feel, and if something isn't right, then it isn't right.

It is hard to keep going...to keep searching...to keep seeing shrugs and new doctors...but take it from one who found some answers and found treatment...keep trying.

You are doing your best to make things better and I applaud you...weight loss, exercise, quit smoking...you are doing it all girl!  You keep going, but also keep looking for that answer.

I don't have any answers for you, just being my supportive self and wishing you better health.

(((HUGS)))
Wanna :o)
  
Helpful - 0
428506 tn?1296557399
I know that I am not unique in not getting a fast answer, and I've read a lot of your posts and know you really understand.  

I have no intention of giving up, though I DO hope to stay out of the doctor's office until my follow up this fall.

I guess I was wondering if people have a reaction to the duration of my current "episode."  Being unwell for 5 straight months is REALLY confusing to me.  I don't want to think that this is my new normal, but I guess I was not expecting my mystery condition to be active for this long.  

That's what motivated my post, the length scale of this current attack, or whatever it is.  It's getting me down to think of the time spent feeling this way.  I am sure you can imagine the impact this has had on my personal and professional life.  I do just try to focus on what I can do to be as well as I can be.  But I am feeling overwhelmed.

I know there is no crystal ball, just needing some support and reminders that this will pass...

Thanks,
Helpful - 0
293157 tn?1285873439
Yeh...I see you have been through it all and the Neuro say the same thing...I've heard this and I'm sure alot of limbolander have heard all this...

I know how difficult this is...(I'm going through it for three years)...and what I do is take some time off...from Dr appt and tell myself to get myself better if I can.  

Then, I will not be able to take it and call my Dr to see the specialists...but I do need to have breaks from all the testing and results ..  I'm still waiting for my Neuro to come back from vacation...to hear results of my MRI..which showed changes..??  

But, it wouldn't surprise me if he said" It mean nothing" ... your age...or something like that.??  Then I would need another break and start over with a new Dr and my old results in hand...

take care and don't give up on finding out what is wrong..I do hope it goes away...it would be nice.

Hugs
andi
Helpful - 0
428506 tn?1296557399
as if that was not long enough....
I also meant to mention that the onset of my symptoms followed an extremely stressful event in my life that ended in a series of infections, including sinusitis, bronchitis, and ear infections.  Other than that I have not been sick much in my 29 years of life.

OK, I'm sure I've packed enough info into this.
Helpful - 0
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