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-   -   In desperate need of help.... (https://www.neurotalk.org/peripheral-neuropathy/28164-desperate-help.html)

aloneouthere 09-16-2007 10:38 AM

In desperate need of help....
 
Hi everyone, I'm a new member here but I've actually been lurking around in the forums for awhile trying to put a finger on my symptoms. I'm a 23 year old male, not diabetic, that's having a lot of trouble getting help. The main reason is because I'm actually living in south korea due to work, and this makes it almost impossible for me to see a good doctor and get a clear diagnosis. I am Korean-American, but I'm not fluent in Korean at all and I feel very stupid sometimes trying to explain my symptoms to a doctor. Korea is lucky because they have national health insurance, but it seems like doctors tend to brush off many things because I guess tests are expensive and they don't want to do it unless they really have to. Also, with how the health system is set up here, I can't just go to a neurologist, I have to be referred by a GP or else insurance won't cover it at all. I've visited several GP's, and all of them say, "no, it's not PN, you're just on your feet all the time, that's why". It's been really frustrating for me the past couple of months because I really have no one to turn to for my problems, except the internet. This is probably the best place to go for answers because it seems like many of you have so much knowledge about this disease. I was hoping that someone out there could hear me out and give me some opinions or feedback, because no one (ever doctors) can here. So I'll just list out my symptoms and just lemme know what you think, if you could take the time to do so.

First of all, I have a herniated disk from 2004 that I never got surgery on. I believe the l4/l5 has degenerative disk disease, and the l5/s1 was moderately herniated. I had 3 epidural injections for this back then and it really hasn't bothered me since. There were days when it ached, but nothing major.

Around late june 2007, I bought a new pair of shoes. I had been wearing the old ones for about 2 years, so it was about time. They were pretty cheap, but not uncomfortable at all. Also around this time, I went whitewater rafting. I didn't sustain any injuries, but my back was very sore, probably from having to sit in a certain position and row constantly. That soreness went away in about a few days. A week after that, I had food from a local restaurant that made me pretty sick. I had a horrible stomach ache and diarrhea all night long. Funny thing it, the food didn't phase my girlfriend (we shared from the same plate). Ever since then, my stool hasn't been the same. It's either diarrhea, or really really soft stool that falls apart after flushing (sorry for the details!)

About a week later, I had a pretty bad headache, but nothing really out of the norm. I took 3 excedrin (not two), and then BAM! my feet started to tingle. I thought it would go away but it didn't. It tingled for about a week, and then was replaced by a mild stinging and burning pain. The burning pain only happened when I was wearing shoes, when I took them off, the relief was almost instant. I thought maybe I had Morton's neuroma but the burning was evident all across the soles of the feet, not just the ball. I got an MRI of my brain done (but this was for a different reason which I actually got a referral for) and everything came back clear. It's really hard to tell if it has progressed since the burning but it surely hasn't gotten better. My feet to burn a little more at night, but that's probably because I've been wearing shoes all day and been walking around all day. I've also noticed that my feet fall asleep quicker than it did before, ie. when I cross my ankle over my thigh, my foot falls asleep when it never used to.

I've visited a few GP's, and one said that it was Sciatica. I've had sciatica before, and it was nothing like this. During my bout with Sciatica, my feet were spared. This is the opposite; my legs are spared, but my feet aren't. Anyways, the GP prescribed my valium and ALA, but again, it's hard to tell if it's been effective or not. I've had a general blood test done, and everything came back clear.

So that's where I stand now; I know it seems nothing like what some of you are going through, but I'm too young for this to be happening to me right now. I'm stuck here for another 6 months at least, and I don't want this to progress because all the treatment options seem very scarce.

Have any of you had similar symptoms to mine? If so, what was the diagnosis? Do you think my herniated disk could be causing all of this? Should I request an MRI of my spine? Like, do you maybe think the rafting incident reaggrivated my sciatic nerve? Are my symptoms typical of peripheral neuropathy? Do you think the food incident/consistent diarrhea could be a factor (irritable bowel syndrome, maybe a parasite)... Why does the burning tend to go away when I take off my shoes? Also, regarding my blood test... it was a "general" blood test. Does that look for vitamin deficiencies, and diseases of the blood? Also, I've noticed that my hair started to fall out; I have found 2 bald patches and bits of my facial hair have been falling out. Does this suggest an autoimmune disorder or am I just too stressed out? I'm sorry that I have so many questions, but these are all the questions I have asked my doctors here and all they give me is a blank stare or discard all of the questions. If you have made it to the end of this post, I truly appreciated you having the patience to read through all of it. I would really like some opinions from anyone. God bless you all.

rose 09-16-2007 01:17 PM

Welcome. Sounds like you know more than most doctors, here too.

Thank goodness there are things you can cover yourself. I hope you will cover all the sensible and safe possibilities you can with appropriate doses of certain supplements, besides of course having a good diet. You may just get lucky and find that a supplement deficiency is your problem. If not, the appropriate ones will support your nerves and possibly slow or lessen the difficulty somewhat.

Weekends are slow. I suggest you use this time to continue exploring here and the vitamin forum, and then I suggest you stick with this thread you have started, since you have provided such a good background here. Others will be along.

rose

daniella 09-16-2007 02:46 PM

Hi. I'm sorry your going through this to and must be scary to be away. I'm a younger person too well 29 but I know how this can be confusing. Though many here are older the bond is the same and the help I have recieved from these people is amazing. I'm still new to this but I wonder if the back issue is what is contributing to the feet that its coming from your spine. My issue is my legs inner ankle/foot and I know they thought it may be coming from the spine or brain but was not. I hope you can find a doc who will order more tests. Have you had an mri of your spine? What about an emg?As for the stomach issue I have my issues too not in the same as you. Could this doc though order some blood tests to test for celiac or immune issues? I know you said they won't for most but maybe smaller tests they will. Another thought if an option could you have one of your docs from your hometown order the tests where you are? Well hang in there and if you want an email buddy I'm here.

Silverlady 09-16-2007 03:10 PM

Just some additions
 
Be sure to get copies of all your bloodwork. There is certain testing to be done and having copies of it will help you know what has been checked and what hasn't.

Do you eat the typical Korean diet and if you do, what do you eat? Are you taking vitamins and if you do, can you list the ingredients and the amts. here? Do you know if you have had a vitamin B12 blood test done?

As Rose said, the weekends are slow.

Billye

MelodyL 09-16-2007 03:47 PM

And yes, definitely get an MRI of your spine.

And get the results and make copies of every test you have ever taken.

If nothing gets done in Korea, then when you come home, come on these boards, tell us what state you live in and someone will refer you to a great Neuro who specialized in PN.

But hopefully, you will find SOMEONE in Korea who can get you some pain relief.

And the B-12 level. That is very important.

Read up on these boards about Methylcobalimin. It saved my life, believe me. Althought I am a diabetic. and I have Diabetic Neuropathy. You have nothing to lose and everything to gain if you start taking Methyl B-12.

So best of luck.

Melody

NTLegend 09-16-2007 05:06 PM

"I had food from a local restaurant that made me pretty sick. I had a horrible stomach ache and diarrhea all night long."

This might be ciguatera poisoning. It can vary from person to person, even if they all eat the same food. Read the material below -- it's from
http://www.whoi.edu/redtide/illness/ciguatera_fish_poisoning.html


One reason it can be so variable, even without the issue of different ethnic groups, is that one person might have already been exposed to ciguatera.

It's cumulative. The person with the worst reaction could be the person who has eaten other meals, which already contained ciguatera.



Clinical Presentation:

Ciguatera presents primarily as an acute neurologic disease manifested by a constellation of gastrointestinal (diarrhea, abdominal cramps and vomiting), neurologic (paresthesias, pain in the teeth, pain on urination, blurred vision, temperature reversal) and cardiovascular (arrhythmias, heart block) signs and symptoms within a few hours of contaminated fish ingestion.

The pathognomic symptom of Ciguatera intoxication is hot/cold temperature reversal, although not all patients report this.

The attack rate has been reported to be 73%-100% with ingestion of contaminated fish, without any apparent age-related susceptibility.

Acute fatality, usually due to respiratory failure, circulatory collapse or arrhythmias, ranges from 0.1% to 12% of reported cases; presently in the Pacific, the mortality is less than 1%. Lethality is usually seen with ingestion of the most toxic parts of fish (ie. the liver, viscera, roe and other organs).

The clinical picture may be variable among individuals, even with the same food source, different ethnic groups, and possibly with different types of fish and/or geographic location.


HAIR LOSS:

"There is no proven test for ciguatera poisoning, either in patients or contaminated fish. Over 175 gastrointestinal, neurological and cardiovascular symptoms have been recorded. Diarrhea, abdominal pain, and nausea usually appear within 24 hours of eating the ciguatoxic fish; the illness can progress to include numbness, itching or tingling of lips, hands and feet, low pulse rate, high pulse rate, dizziness, severe fatigue, hair loss, rashes, anxiety, depression, and . . . "

Yorkiemom 09-16-2007 05:18 PM

Hello there:

Welcome to our board. I hope you are able to gain some useful information here. You will have plenty of support and maybe someone here can figure out what is going on.

I have 2 suggestions.

First, start with the path of least resistance. The food. Since they won't refer you on to a Neurologist, start with the GI issues and tell them you think you have been ill from food you ingested whenever and it seems to be getting worse. This way, if it is the food causing it, you should find out quickly and receive treatment, though you may have to start over with a new doc, if the old one is indifferent to your complaints.

Secondly, I have PN. Some shoes that I wear cause my feet to hurt and burn like fire. Try changing to a different type of shoe, and make it a pair that is not made from the same material. Leather is better in my case, ALTHOUGH the insoles are not leather and this is what seems to cause me a lot of burning. I would guess I am sensitive to some of the plastics. Some people with PN are extremely sensitive to various types of fibers. Some complaints seem to relate to artificial fibers-hard to get away from those in shoes...

Good luck to you and please, keep us posted.
Cathie

Brian 09-16-2007 05:51 PM

Hi and welcome, your spine does sound very suspicious but it still might not be the cause, i think its very well worth looking into though, if you can get an MRI on your whole spine as it may show if there is any pressure causing this to affect your feet, normally pressure on your lower spine affect your feet but it can come from the cervical spine as well.

As far as soon as you take your shoes off you feel better, well anyone with small fibre damage in the feet, normally can't stand wearing normal type leather shoes, usually aggravates the heck out of them, as there are many,many small fibre's at the surface of the skin, the small fibre's job is send correct signals concerning heat, cold and vibration to the brain, when there damaged they send confused signals that's why you feel that burning feeling and its very common for the feet to burn more at night, some can't even stand bed sheets on them, which makes me ask, are your feet sensitive to touch? or have you any numb spots any were on your feet ?

Loosing patches of hair, have you been to a dermatologist ? Alopecia comes to mind, someone correct me if i am wrong but i think i can be caused by the immune system, autoimune problems can be asociated PN, like Hypothyroidism and another is Celiac disease which one symptom is diarrhea.

I would defiantly take notice of the previous posters and i would get a refferal to see a neuro that is a PN expert not just a normal neuro, to get all appropriate blood and other tests done.

good luck
Brian :)

daniella 09-16-2007 07:12 PM

I don't think just normal blood work tests for auto immune issues or certain diseases so you also may want to ask about that too. Also maybe to have it repeated. I know in the past with mine it would vary greatly in between. As for the shoes for me ex even wearing socks can aggrivate my issues to an extreme. It really depends. Have you lost weight through this?That could be a sign to your body is not absorbing nutrients and why the stomach issue,hair loss,and possible other issues.

Dakota 09-16-2007 07:19 PM

Hi and welcome -- I hope you find some help here. With regards to your symptoms and back problems: Usually, if a disk or back problem causes neuropathy it is not symmetrical. That is, one side will hurt and the other will not, or will not hurt as much. When the symptoms are symmetrical and start at the bottom of the feet and move up, it is usually a systemic problem, like diabetes, toxicity, or..... idiopathic, which means they don't know what the cause is.

aloneouthere 09-16-2007 09:21 PM

Wow...thanks for the quick replies..
 
You guys are great. It feels good to post something, go to sleep and wake up with a bunch of responses =). Thank you.

Rose, thanks for the advice. I did buy a bunch of vitamins.... Methyl b12, benfotiamine + B complex, ALA, Gonna order some GLA, Ginkgo biloba, Acetyl-l-carnitine. But I was wondering if it's ok too hold off on the B vitamins until I get a blood test for possible deficiencies? Unless my general blood test should have already tested for them. The results were all in Korean so my GP just said your blood is normal. I don't really understand what she meant by that.

Daniella, I have not had a MRI of my spine. Nor have I had an EMG. I do however, suspect that it is small fiber damage if anything. Also, it's been really hard for me to be referred to a neurologist to get to that EMG/MRI phase. In regards to the blood test, do I have to request a specific blood test? I thought maybe the general blood test covered most things.... Am I wrong? And yes, I have lost a lot of weight. I actually lost about 10 pounds in one month, but I think that was due to lack of exercise because of this. I like to lift weights and take my protein shakes, but have stopped doing this since my feet were affected. I actually feared my feet were affected by me doing squats with a bad back, which would again, be a possibility... But anyways, the weight loss was mostly muscle, and I have started to gain it back by eating, eating, eating.

Silverlady, my diet hasn't changed too drastically from America. I do eat the traditional korean diet, which consists of Rice and vegetables, but I used to eat that in the states since my parents are very traditional. I do of course, eat lots of meat and dairy as well. As of now, I'm only taking alpha lipoic acid 600 mg a day, which my GP prescribed. I have bought some B vitamins but I am waiting on them to do a b-vitamin blood test first.. I don't want any false readings...

Melody, thanks for the advice. I actually bought the B12 cause I read about you raving about it on these boards. I will push for the MRI, I am really hoping that the spine is causing it....but that doesn't explain the diarrhea.

NTlegend, that could be a possibility. The only problem is that I don't eat fish. I stay away from all sorts of seafood. Is there another illness that's similar to that but doesn't require the ingestion of bad fish?

Yorkiemom, I have changed my diet since. I'm mostly on a sandwich diet that is high in vegetables. I drink water most of the time and try to stay away from sugary things. I don't know how it has affected me but I think I may have to give it some time. In regards to shoes, I bought another pair and spent a lot of money on them. I don't feel a difference, but again I may need more time.

Brian, my feet are not sensitive to touch nor do they have any numb spots on them. My feet actually feel normal to the touch; it's just when I put shoes on for about 2~3 hours or so. I've been to a dermatologist, she said it was caused by stress and gave me a steroid shot for them, and the hair seems to be growing back slowly. I wish it was that easy to say "hey, I think I have PN, can you send me to a PN expert?". To be honest, I don't even know if a PN expert exists here. The process to get a referral is painful and takes a long time. I also noticed that you pretty much healed yourself of your condition... how long did it take and how did you approach it?

Dakota, yes my problem is symmetrical, but my right foot burns noticeably more than my left foot. There are times where it feels like both my feet are burning, but in actually it's only my right. Don't get me wrong, the left one burns, but it seems like most of my attention is spent on the right foot. The right foot also buzzes at times, where my left foot doesn't.

Again, thanks to everyone for the quick responses. It's good to know that I do have some sort of support.

Brian 09-16-2007 11:01 PM

Hi again, it does biomechanical if that's the right word, seeing you only have problems standing up walking sorta thing, i would push for an MRI of your spine at least, shouldn't be to hard [ i hope] to convince them that PN can come from pressure on the spinal cord.

It does sound pretty tough to get things done over there but anyway I found this Koreon Neurological Association site that MAY be able to put you on to a good neuro at least, if that's possible at all. :D http://www.neuro.or.kr/eng/contact.html

In answer to my PN, it was caused by prediabetes and low b12, it was caught early by a PN expert, which over 4 years only took a change of diet [no sugary carbs] and exercise and plenty of b12/ multi B & vit C as well.
good luck with it anyway,
Brian :)

rose 09-17-2007 10:12 AM

Do wait on the vitamins, but only if you can get proper testing right away!

And I would start a good fish oil.

rose

aloneouthere 09-17-2007 09:35 PM

I had a question. It seems like my symptoms came on a week from each other; does that mean my cause is acute? sub-acute? or chronic? I know it's impossible to know, but what do you guys think? Also, I'm going in for a colonoscopy to get my gut tested in regards to my diarrhea... I had a question for Rose or for anyone. I noticed that in your webpage about B12, it said that parasites or bacteria would cause a malabsorption of b12. Do you think my colonoscopy would be able to catch those things? I think it would be good to know so I can ask my doctor about it. Anyways, if you don't know, it's not a problem; I can ask anyways. Thanks!

Silverlady 09-18-2007 08:10 AM

I don't think so,
 
I think you are going to have to have an endoscopic procedure. They take biopsies thru a scope down your throat. I've had it done, found an ulcer, etc. Doesn't hurt, they put you to sleep.

Billye

mrsD 09-18-2007 08:43 AM

Since you are having GI symptoms...
 
I would avoid all gluten in your food for 4 weeks. See it that changes your
bowel habits. That sandwich diet may be the problem.
Gluten intolerance can give PN symptoms.

If you have frequent diarrhea, you could also have Crohn's disease, and this needs attention. It can follow an intestinal infection from food borne illness. A colonoscopy can show large parasites, like tapeworms.
But a stool sample is needed for smaller parasites like Giardia. Sometimes the first stool sample for Giardia is normal, but since the parasite has a 3 day cycle, a second one usually shows the bug. It comes from unclean water or restaurants or contact with small children. (daycares).

Frequent loose stools leads to electrolyte disturbances, loss of potassium and magnesium. The high intake of vegetables may upset some people, due to gas formation. If they have Beano over there, I suggest you try that.

It is hard to live in a country with different food and habits. You may be intolerant of something else besides the gluten. Say soy, or the MSG that may be in the food. MSG can cause burning. Monosodium Glutamate.

We have a gluten intolerance board here. So check them out too.

The two remedies I find most useful for burning are vitamin B1 in 200mg-300mg doses/day (Thiamine) and Alka-Seltzer with aspirin (if you can take and tolerate aspirin). If you can find an ointment with menthol in it at a chemist's there, it might help to rub it on. Menthol stops burning, but does not cure it. I have no idea what is available in Korea however. If you can use the internet, Biofreeze gel is one of the best. Some countries do not import certain things however.

If you damaged your back somehow, that is always a possibility, but I would think you would have other symptoms with the back as well.

You sort of have to be a detective to ferret out your problem. I hope it resolves for you soon.

aloneouthere 09-18-2007 11:08 PM

Thanks, again. I have a little update. I went to the neuro and decided to pay money out of my pocket. He examined me, and he said lets do a nerve test. He did a NCV, came out normal, and sent me home saying it's all stress related and has nothing to do with my nerves. I tell you, these doctors are NOT being very helpful over here... Next is a MRI for my spine (probably just lumbar since I can't afford the rest) that I have to pay out of my own pocket.. and it doesn't come cheap, but hopefully they find something there.

Also, the problem with avoiding gluten is that foods here have NO nutrition labels! So it's really hard for me to see if it's gluten related... but even so, I've had gluten all my life and it caused me no problems... it's possible that suddenly I'm unable to tolerate them?

NTLegend 09-19-2007 12:18 AM

Another possibility
 
. . . .

. . . .

amit 09-19-2007 03:27 AM

aloneouthere
 
NVC is good for the big nerves and not for the small fibers. It is beter to do skin biopsy and QST. To my opinion - save the money for the MRI for a while.

aloneouthere 09-19-2007 06:30 AM

Also it seems like when I sit in different positions, my legs fall asleep when they didn't used to before... does this indicate compression of a nerve? Or does PN tend to do that as well... it seems that I don't really understand the mechanisms of this disease...

Rina.... I don't even know if they carry out those tests here, at least that was my impression when the neuro was so quick to write me off after ONE test.

HeyJoe 09-19-2007 01:28 PM

they often write you off after one test here also, it depends on the doctor.

aloneouthere 09-20-2007 01:19 AM

Another update... did the colonoscopy this morning; the internet said that i wouldn't even remember it because I would be sedated, but I kept waking up due to the INTENSE pain. WOW. Anyways, they did not find anything. But teh colonoscopy only finds what's in the large intestine right? Not the stomach, or the small intestine?

Roxie2007 09-20-2007 06:51 AM

Good Morning Alone!
When I have tests like Endoscopy and Cholonoscopy I can't have 'twight light' sleep because I keep waking up in major pain during the procedure....It's awful! Now I demand "Mac" anesthesia instead.....that's being put totally out.......NO MORE twight light sleep for me!

I had nerve conduction test......I think that's what you said you had......and it showed negative for PN also. I had to have the nerve/muscle biopsy before the dr. found the cause of my pain, Chronic Anxonal Neuropathy.
It sounds like you might have to just do all you can over there.......take your supplements and vitamins, change your diet and then come back here to get good (hopefully!) medical care. Good luck to you!!

jarrett622 09-20-2007 11:05 AM

How frustrating this must be for you!
 
Not being able to find a GP that will *listen*, being in a country where you don't know the language.... Wow. I'd be scared. Surely there has to be a doctor somewhere that will do what's necessary?? Or am I being overly optimistic?

At any rate, you've found the best place in the world to be (this board) for finding info and getting good, solid, knowledgeable input. Welcome! And I hope you have made some headway.

Barbara

aloneouthere 09-20-2007 11:18 AM

Anyways, this is what I'm planning to do. I'm gonna go to another neuro, give him the normal NCV, and tell him "I talked to my neurologist in the states(of course I don't have one in the states) and he said that you should run these tests: (LIST ALL POSSIBLE TESTS). He said these tests are very important and a condition, especially this one, shouldn't be determined after one test." What do you think? I think it's a good way to get the message across without undermining his knowledge. Maybe he will think " ahhh, this is what they do in America." Hopefully, just hopefully.

MelodyL 09-20-2007 12:35 PM

Explain this to me. Alan has had a colonoscopy and he said it was the "best sleep I ever had".

I'm petrified to have one, and Alan says "it is absolutely nothing".

Then I read your posts.

Forget it. Not me!!! Not any time soon!!

mel

Silver Swan 09-20-2007 05:26 PM

My colonoscopy
 
Hi Melody:

I had my first colonoscopy several years ago. The doctor said that at my age at the time if I had never had any polyps, I never would have and so would never have to have another colonoscopy. So, there were no polyps.

As far as pain is concerned - not one moment of pain or even discomfort. The doctor said in their office they use a smaller tube such as is used for children and maybe that explained that. I was given some kind of relaxer. Watched the whole thing on a sort of TV screen and it was very interesting. The only part of this that was not fun was cleaning out the colon drinking the fluids prescribed. This required a lot of time spent in the bathroom which was annoying but certainly not uncomfortable. Many say that is the "worst" part of a colonoscopy. The doctor complimented me on how "clean" I got my colon! After the procedure I was given my choice of juice and laid down to rest for awhile before getting up and driving myself home.
There was nothing awful about the whole thing!

Shirley H.

MelodyL 09-20-2007 06:41 PM

Thank you Shirley:

I'm still not getting any colonoscopy. Nobody in my whole family ever had anything wrong with their stomachs. Brains??? Absolutely!!! But not their stomachs.

I have gotten my weight to almost normal, I reversed the diabetes in my eyes, I stopped the neuropathy cold in its tracks with the Methyl B-12. I do the Bone Density stuff, the yearly mammo and exam stuff, and the blood testing stuff. So far, so good.

I know me. If I have to start thinking about another invasive test, I'll go bonkers. I need to de-stress my mind and body, not add any stress. I have scoliosis but have never had a symptom (unless a once in the while pain between the shoulder blades), been having them on and off for 10 years. Lately, though, no pain. I move every day. I walk every day. I stretch every day. I eat what I'm supposed to eat and I don't eat what I'm not supposed to not eat. This I do for my diabetes and for my body. I have absolutely no problem with giving up any thing if it's not good for me.

I hope to spend another 60 years on this planet. If I don't, well, I don't but it won't be because I haven't done everything nutritionally and exercise-wise.

As a matter of fact, this morning, when I was just starting to stand up straight (after 4 days with sciatica because of the nutty weather), well my 88 year old neighbor comes running out of her house (and I do mean running) and she goes "oh, it's you, I didn't recognize you because of the way you were walking, STAND UP STRAIGHT". Alan laughed and I said "Angie, I have sciatica, I'm doing better every day". She ordered Alan to go behind me and make me straight.

She said "There is no reason for anyone to have arthritis, or sciatica, I know because it's in my wellness book". I looked at her (remember, she's 88), and I said 'what else do you know from your book"? She goes "stay in the sun for 20 minutes a day, we need the vitamin D and anything else the sun gives us". I take Alpha Lipoic Acid, Folic Acid, Vitamin C (lots and lots of that)" She takes everything but the kitchen sink.

Even though they planted a defribrillator in her chest last year, her two daughters (who are in their 50's) can't keep up with her. She would go dancing every night if she could. Her daughters just stand there and sigh and go "oh please, you're 88 years old". I burst out laughing and said "my god, I wish my mother was 88 and wanted to go dancing".

So she's my role model. If she says I don't have to have arthritis or sciatica, then I'm not going to have it any more.

Hey, I can try!!!

mel

daniella 09-21-2007 09:35 AM

When I was having major stomach issues they also did a ct scan I think. It was to check my pancreas. Also my first nc test showed less then the repeat with the ssep. My neuro said the ssep is done when the nc doesn't show as much as the pain. I may be somewhat confused though on exact.Can I ask about your parents since your young and what they think? I understand there is little they can do but I think support mentally is very important. I know people in general but also being young people don't understand. Especially when your young running around and worring about different things if that makes sense. Well hang in there and I hope you find some relief and answers soon.

aloneouthere 09-21-2007 07:43 PM

To be honest, I haven't told my parents yet. They are very stressed out and on top of that, very worrisome to begin with. I can't burden them with my problems. I will probably let them know when I move back to the states so they won't have to worry about me being all alone out here not being able to do anything. I just hope I find a neuro who really cares.

dahlek 09-21-2007 07:55 PM

Families, aren't they 'fun'?
 
I've yet to meet what's called a 'normal' family.. Honestly that'd probably be very DULL.
By 'get back' Maybe you could tell us where 'back here' IS and those here from that area could PM you with the good/bad/indifferent/crazy/super docs they've encountered? I mean, on this board it's OUT THERE and can hurt the boards, but PM or e-mails could help you find a neuro etc who you mite well, get along with for the diagnostics and after stuff. Just a thot. I probably can safely say that each of us has probably seen at least 3 neuros before whatever diagnoses? and then many here are still in search for the 'right' one.
Sometimes it's luck, others chemistry, other times its purely a quirk of fate. I know I got lucky early on....I have learned from others here how lucky I have really been! But, along the way....I've seen some real well - 'characters'! for want of a better way of description.

Play it by 'ear' You will really know if things get truly worrisome! All the brain's red-alert bells and whistles go off! Trick to keep CALM is the hardest thing to do! But must be done.... Keep us informed - j

aloneouthere 09-21-2007 08:01 PM

Get back would be Los Angeles, California...


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