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Old 09-10-2008, 02:26 PM   #1
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Question Strange Symptoms. Asking for Advice..

Last request for help


I have posted here so many times over the years itís ridiculous. I am reaching out one last time for help because I can not get any from my doctors. I suffer from some very interesting symptoms on a daily basis and I have gotten nowhere fast with doctors. The symptoms are odd and difficult to describe. When I tell people what I suffer from, I donít feel like anyone takes me seriously. If they could live one day in my shoes, they would know just how serious I take this.

Have you ever taken a vicodin or other strong opiate/opiod based pain killer? You know that groggy, drunk, out of it feeling that you get from them? I live with that feeling day in and day out. It started suddenly about 2 years ago and seemed to resolve on itís own for a while, coming and going at random times. Now about 2 months ago, it has started again and it is almost constant. It is really tormenting and emotionally draining to live like this and have nothing that helps to relieve the symptoms.

I have seen my regular doctor and he takes no interest in the subject. And this is after just changing from another doctor who also didnít really seem to want to investigate.

I saw a neurologist yesterday, hoping that he could offer some help and he treated me like I was wasting his time. Is my description of my symptoms really that ridiculous? I know it sounds odd, but it really is like a cross between being doped up from pills and being intoxicated from alcohol. If I had to actually list the symptoms, it would look like this:

CNS Symptoms:
Cognitive Dysfunction
Confusion
Dizziness
Loss of balance and hand coordination
Concentration Problems

I also have other physical symptoms that recently started such as:
Frequent and relentless muscle twitching
Muscle weakness, especially in the hands
Chronic Fatigue


I am self employed and can barely work now. Before all of this I was a totally normal, active, positive twenty-something year old guy. Everything was going great and then all of a sudden this. Thatís why I have a hard time accepting it when people tell me itís depression or anxiety. Yeah, im probably depressed now, but its because of how I feel.

If anyone out there has ANY advice on how to approach this Iíd really like to hear from you. Maybe advice on how to deal with doctors, or just cope with this. I just really wish I could find someone who would take stop, take a minute, and really listen to me and look ay my history. Is that really asking so much? Iím a pretty passive person, maybe I just need to get really firm on my doctor? I donít know. Any advice would be helpful.

 
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Old 09-11-2008, 04:50 AM   #2
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Re: Strange Symptoms. Asking for Advice..

reading your post was like reading my own a year ago. There is nothing more frustrating than knowing something is differant and Dr's not taking you seriously and worse to be told its stress or depression. I had this happening to me as well. And feeling like THIS is causing stress and depression, your absolutely right!! Its horrible to feel like Dr's are thinking we're crazy, so sure, that will cause stress!!

That drunkin out of it feeling your describing, I know too well. Its like my words don't make it out correctly and I can't think clearly at all. I did my share of partying in my teens and am now 42 and haven't used drugs but feel as though I am under the influence. I also get an overwhelming blast of fatigue and can only lie down and rest to feel better. This was one of my 1st symptoms to show up and Drs really dont take that too seriously but I know how this can affect lifes functionability.

I searched, saw multiple Dr's who dissmissed my symptoms. I fealt hopeless and didn't know what to do. But this April, I was finally able get a confirmed diagnosis. And knowing what I have is so much easier than the unknown. I have Arnold Chiari Malformation, which is a brain disorder affection my nervous system. Dr's didn't find this. I found the malformation when I looked at my MRI and brought it to my neurologists attention. He opologized for overlooking this. Some of these neurological diseases are difficult to diagnose and then again, alot of dr's dont know or understand them, so they don't really know what to look for. I also have the same symptoms your experiencing such as dizziness, muscle twitching and weakness. Though these aren't painful or dabilitating, they are a sign of something going on. The fatigue and cognative issues are difficult to function with.

My only advice is to keep strong to let Dr's see your strength and determination. But if you truly believe something is happening, don't give up!! Don't let those Dr's get you down just find a new Dr. I know its a long hard road, so many of us have traveled it, but there is hope. Keep your chin up. Try to keep any stress from your life, if at all possible because, although its stress isn't the problem, stress will most definately increase these symptoms. Just try to relax and rest when you need it. If you have a Dr who you are comfortable with, go back and have a heart to heart and try to explain how this is affecting your life. Maybe he or she will take a better interest.

I too, know how this can change your life overnight. I was self employed as well. I had taken over our family buisiness 6 years ago, my dream. Today, I am unable to work. I had to make the choice between my health and my career. This was tough for me because I was a workaholic, working 7 days a week to provide for my family.

I hope you can get some answers and someone to take you seriously. I'm here if you need any help. Good luck!!~ Cindy

Last edited by Administrator; 02-12-2012 at 05:39 PM.

 
Old 09-11-2008, 09:57 AM   #3
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Re: Strange Symptoms. Asking for Advice..

First of all let me say that you were given excellent advice from Cindy....she is the most caring person and very knowledgeable about quite a few health topics.

Listen you are not a nobody....just finding a doctor to investigate your symptoms is what you need and you deserve to be taken seriously.Not being able to function normally is not a light thing.May I ask what tests(if any) you had done?Your symptoms could be caused from one of many,many things.I am B12 low-borderline and have had ALL the same symptoms as you....yes I have really!May I ask if you ever have "tingling" in your fingers,cold hands/feet also?

I also have Chiari like Cindy....so sometimes it's hard to tell what is coming from what(lucky for us who suffer from Chiari!),but I do absolutely understand what you sre going thru.My advice to you is you need to definately start with a new doctor and I'd ask him/her to test your B12 level(most docs just look at your iron on a cbc and think you're fine...this happned to me) and also check your magnesium level(when mine gets low I get muscle twitching also)....it took me a very long time to get some answers,but when we are not well we have to stand up for ourselves and it's not easy these days,because doctors are not like they used to be....everything is diagnosed as depression/anxiety it seems....and of course who wouldn't feel somewhat depressed and anxious when you're sick and the doctor/s you've seen don't want to investigate your symptoms with some tests....that's why we go to the doctor>because we want to find out why we are sick<.

I hope this helps you in some way....keep posting so we know how you are doing,okay?Just start fresh with a new doctor and don't even mention that you were seen by those other drs.(or you might not get the help and answers you need).Take Care~Scout

Last edited by Administrator; 02-12-2012 at 05:39 PM.

 
Old 09-11-2008, 10:11 AM   #4
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Re: Strange Symptoms. Asking for Advice..

thanks very much cindy and scout. I guess it's a good thing that I have an MRI coming up. I actually had one about 2 years ago, right when this first started and it was normal so I don't know what to expect this second time around.

Taking your advice, I will keep trying with the doctors and ask them for some more specialized and targeted bloodwork. B12, mag, etc etc. I'm pretty sure I've never had any of those yet.

As for tests in the past, like i said, ive had an MRI some time ago, and EEG (test wasn't useful because I couldn't fall asleep), a heart echo and ECG and that's about it. Standard bloodwork like CBC, Hepatic, Lipid, have been done, but not recently. I also had some infectious diseases testing for HIV and stuff like that.

It seems odd that my regular doc is saying "we've done all we can do". I mean the list of tests I just gave you isn't that extensive is it???? It seems like there is a lot more that could be done.

One avenue i want to explore is Lyme disease. I use to do a lot of camping before this all started so who knows. I hear it's hard to find someone that is even a little bit familiar with the disease and it's even harder to reliably test for.

I will surely keep both of you posted on whats going on. It's nice to finally see that someone out there knows what this is like. Did you guys have problems in your personal lives coping with this?

I live with my girlfriend of 6 years, and this has put a tremendous strain on our relationship lately.

 
Old 09-11-2008, 10:18 AM   #5
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Re: Strange Symptoms. Asking for Advice..

re: the tingling in hands. Yes as a matter of fact I do have that. I don't usually notice coldness, but I live in Sacramento and it's been super hot here for the past few months.

the tingliing started in my left hand on the outer fingers and sort of moved up my arm. then it moved to my right hand and started to become somewhat painful. eventually the whole thing seemed to turn into muscle twitching in the arms, and then again, the whole body.

i was on a zocor for high cholesterol at the time, and thought it may have been peripheral neuropathy so i stopped the med, but the symptoms continued.

 
Old 09-11-2008, 11:47 AM   #6
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Re: Strange Symptoms. Asking for Advice..

hey just get your B12 checked....you have all the symptoms,but it could be something else...B12 level goes from 200-1100....when mine was 222 I was suffering....even when it went up to 374...my dr. said when it's actually below 400 many symptoms start to appear....my dr. too at first did a general cbc and said I was fine..so I went to a hematologist and she knew like right away what my symptoms pointed too....I remember having the pains in my hands and do you ever feel like certain materials,etc.feel funny to your hands/fingers?

As for relationships go...my husband has had to deal with all my symptoms and it's not easy at all,but he puts up with me and knows there's a reason why I feel this way...you know it's hard on yourself,but it's also hard on the person you're with...it just takes time....when you find out what's wrong it will be easier for the person you're with.That's why the people here can absolutely understand,because having been thru health issues we have compassion and some great advice too!

Sometimes when we have to endure so much we don't realize 'til later that we have become stronger thru it all......don't give up....you can make it thru all this!

Also they are looking more closely now at MRIs for Chiari...one in about every 4 persons has it and it presents a host of symptoms.So I am happy to hear you are getting an MRI....and Cindy is the best person to answer questions about Chiari....she is a fantastic person and knows so much about it.Well try not to worry ...I think you're on the right path to getting some answers and help~Scout

 
Old 09-11-2008, 01:11 PM   #7
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Re: Strange Symptoms. Asking for Advice..

There are so very many tests and even when they've done them all, they still may say "we've done all we can do". My regular PCP who I had a great rapor with for over 20 years said that to me. I stood my ground with him and told him he knows me well enough to know I never went to see him unless it was something bad. I walked out that day very angry and he knew it. The following day, he called me to say "lets take another deeper look at things". He never did diognose me and yesterday I asked him about his knowledge of my chiari and he said all he knows is what I've told him. So see, doctors don't know everything. You just have to find a Dr that is willing to admit that!!

An MRI is good to repeat at this point, as well as the other tests that scout has mentioned. So many things can cause these crazy, unknown symptoms. I had looked into lyme disease as well, early on because the symptoms are similiar. But it is a tricky thing and tests results can be false. But Dont give up!! You'll get there.

And know that you have support here on this board!! It is a very lonely place in the outside world because people don't understand what your going through. Especially when Dr's are saying theres nothing wrong, we feel even more disbelieved by others. But here, we get it!! We know what your going through and know how important it is to be able to share with others who understand.

Relationships are difficult when we're healthy, let alone being sick. And it definately can strain a relationship dealing with all this. The most important thing is to keep the communications open with your girlfriend. Just think of how all this scares you? How must she be feeling? Talk to her and express your concerns and see where she's at with this whole thing and you might be surprised at what she says.

I am VERY lucky that I have the most suppoortive husband. He's a saint and I truly love him all the more for the support he's given me. I have 3 kids, ages 16, 18 and 21 and I think its harder on them at times. But I think too much at how I'm failing them by being sick and how much this has affected they're lives. Maybe I worry more that them!!

And scout, thanks so much for all of your kind words. Its nice to hear you say those nice things. Your a sweatheart!! I hope your feeling well these days. Its great hearing from you again.

Take care

Cindy

Last edited by Administrator; 02-12-2012 at 05:37 PM.

 
Old 09-15-2008, 07:19 PM   #8
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Re: Strange Symptoms. Asking for Advice..

Hi there
I second the motion get your B12 done.......I presented with symptoms 5 years ago extreme fatigue,went to numbness tingling elctrical pain,stomach issues.at the tiem my level was 372 I was finally diagnosed when my reading was 130 by that time I couldnt talk well, vision was off foggy head memory loss anxiet attacks that would happen in the middle of the night couldnt sleep urinated way to much the list goes on....On B12 therapy and getting better it is easy to treat although it is important the right B12 be used......
I suggest you have theses tests B12 serum.....uMMA....homocysteine the last 2 are very impotant cause if your serum levles are normal these 2 will be elevated with a defiency aslo red cell folate to much folate can mask aB12 defiency....Only to happy to give more help if you want
Good luck to you

Last edited by Administrator; 02-12-2012 at 05:37 PM.

 
Old 09-15-2008, 09:09 PM   #9
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Re: Strange Symptoms. Asking for Advice..

B12 sounds like a good place to start investigating. Thanks for the suggestion. I really hope it could be something that simple because this is getting ridiculous...

 
Old 09-15-2008, 09:38 PM   #10
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Re: Strange Symptoms. Asking for Advice..

im sitting here reading and learning more about b12 deficiency and my eyes are welling up.. this is literally the first time ive read about something where every single problem that I'm having is listed as a symptom (other than chronic fatigue/fibro m/lyme).

i just sent my doc an email asking for a b12 serium, uMMA, homocysteine and folate lab.

im really not trying to get my hopes up too much here, but for the first time I really think i maybe be on to something. i thank all of you and I will let you know what happens.

 
Old 09-15-2008, 09:50 PM   #11
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Re: Strange Symptoms. Asking for Advice..

Yes, I hope this is your answer too as it easy to treat...The therapy has been a slightly bumpy road for me so I am here to help you if this is your diagnoses...Healing can take sometime but it works and there is light at the end of the tunnel.
Please let us know hoe you get on....
Good luck

Last edited by Administrator; 02-12-2012 at 05:37 PM.

 
Old 09-26-2008, 11:39 AM   #12
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Re: Strange Symptoms. Asking for Advice..

Maybe you should do some research on-line about Autonomic Dysfunction. I have all of these symptoms and this is what I was diagnosed with a couple of years ago. The things that the body automatically does doesn't happen the way it's supposed to.
Falls grandma

 
Old 10-03-2008, 12:50 AM   #13
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Re: Strange Symptoms. Asking for Advice..

disappointing news:

i got my b12 checked and the results were normal. i think ill wait a while and recheck. i was so sure and hopeful that it would be that simple. i started taking OTC b12 supplements, and I really felt like it was making an improvement, but maybe it was just wishful thinking.

more disappointing news:
the wellbutrin seemed to be working great, but I think ive developed a reaction to it. i have had severe itching and hives for the past two days and that is apparently a side effect of wellbutrin. just tonight the spots that were itching have become painful to the touch and it seems to not be so much the skin that has an issue, but the bone and muscle under it. its very odd and somewhat of a let down. im not sure yet if its an allergic reaction or just a side effect, but its bad enough that I have stopped taking it. im waiting for hear from the prescribing doctor to see what he thinks about this. if this strange situation clears up after a few days, ill know it was the wellbutrin, if not, ill go back on because it seems to be making things better, even if it's just masking the original problems.


ill keep in touch.

Last edited by xersen; 10-03-2008 at 12:51 AM.

 
Old 10-03-2008, 03:51 AM   #14
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Re: Strange Symptoms. Asking for Advice..

I know how dissapointing it can be to think your on to something and maybe this will get you the help you need, only to be dissapointed in the end. The fact that the B12 was fine doesn't mean there isn't something going on. It just means that they haven't found it yet. Hang in there Its a hard road, I know, but don't let it get you down. You'll find your answers, you just have to be strong and try again.

As far as the reaction, that does sound strange. Let us know what the dr says. Theres other meds out there if this one doesn't work out.

Take care

Cindy

Last edited by Administrator; 02-12-2012 at 05:36 PM.

 
Old 10-04-2008, 03:46 AM   #15
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Re: Strange Symptoms. Asking for Advice..

Hi There
I would love to know your level of B12 it is of the utmost improtance that there are other tests done with B12 serum they are uMMA & Homocystiene as they will be high in atrue deficeincy even when ithe serum is normal...The fact that you have taken some B12 already would skew your tests anyway...
If your reading is below 550 it is to low for sure if you feel it was making you better your answer is right there wishful thinking is the best thing you know our minds have a lot to do with our healing....
good Luck

Last edited by Administrator; 02-12-2012 at 05:36 PM.

 
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