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Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling bad

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Old 12-30-2006, 03:04 AM   #1
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Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling bad

Over the last 4+ yrs, I started having odd symptoms which for a LONG time I was told was in my head (but i had no insurance THEN and got the boot every time). I was dx's with panic and anxiety disorder... Given zoloft, Panic attacks went away after a few months, anxiety stayed and now comes and goes. Zoloft after a yr turned me into a zombie -i felt no emotion, good or bad so, I got off it.

My memory has been getting worse over this time, I'm early 30's now, I would get weird hot sensations on skin on my arms and chest as if a bad sunburn, tingling in foot & fingers, some times face. Have become phobic of going out alone due to my pain and symptoms that hit random, i'm sensitive to light and sound.

I often have to let the person riding with me, take over and drive.... It's like my arms go dead or my legs, or my tongue even..... I never know what it will be... I used to obsess about these things for the first 2 yrs or so but got sorta used to it now and don't sit round thinking about it...... It just comes out of no where....

the other day my whole right side went dead. 1st i felt soooooooooooooooooooooooooooooo tired as if i had to sleep RIGHT THEN & THERE, just a huge urgency to sleep, had pricking feelings in forearm and fingers, then pain behind my leg, then couldn't speak right and got head ache, been getting weird pains and head aches (head aches have started over last 6 months). I might go 2 or 3 months and feel fine as if nothing is wrong with me, then -wham!!! who knows what it will be each time...

I woke up one day having trouble breathing and tightness in chest and throat so went to ER and was Dx'd w/ asthma and put on inhaled steroids (qvar) and xoponex rescue inhaler. The qvar gave me oral yeast infection right away and had to go back to doc to get pills for it. The yeast came almost every week! and had to keep getting treated for it. I was rinsing mouth like crazy and doing the swish and swallow anti-yeast rinse so, later switched steroids).

Then saw a pulmonologist and was dx'd with gerd and, asthma test was inconclusive due to the girl litterally sucking all the air out of my lungs (she pushed wrong button then said, sorry... sheesh! it sucked so much air out, my jaws were sucked together like a fish and made a pop sound when i pulled myself off the machine). My numbers were low the first round w/o xoponex (which is same as albuterol but with out the jittery feeling). The 2nd time with the inhaler was when she messed up and it sucked the life outta me so we had to try another day.

I started nexium 20mg 1xdaily. My food would stay down much better and didn't have burning in chest but after a few weeks on it, my anxiety hit the roof and heart was pounding. I figured it was just my issues trying to come back but looked into side effects of nexium and that was one of them so I stopped taking it and all the anxiety went away.

I saw a gastro doc, he did endoscopy and found nothing but did stretch my throat which helped me to swallow a lot for a month or so but slowly it has come back (i know someone who had to get theirs stretched 3 times before it has stayed fixed, for her now, it's been 2 yrs so far & she can eat anything), I'm having a LOT of trouble even swallowing saliva at times and eating food... is just like shooting the very back of your tongue/throat with novacaine and then trying to swallow -just not happening. I have almost got food into airways many times now and I am starving as we speak but can't get it past my throat.

After the gastro doc, I saw allergy doctor for my breathing issues and did allergy tests. Turns out i am allergic to a lot of stuff including my sweet little doggie which is staying -too bad allergies! Lucky for me, it's only one of my mild allergies or else he would have to go. I was put on claritin-D, singulair, advair discus (i never took this one, salmeteral which is in it, has caused a lot of asthma deaths -no thanks!), nasonex nasal steroid, azmacort steroid inhaler (no more yeast infections -yippy!!). I was also dx'd with allergic rinitis this time. The nasonex (and all others i have tried for nose) have closed me up like i did not have nostrils so i stopped and could breathe through nose most days. Decided to stop taking claritin-D cause my heart was beating weird and I got a horrid kiddney infection shortly after taking it.

Had to go to ER with kiddney infection and get it treated with antibiotics and some other stuff.

I'm a mess..... but not every second of the day (just very often) and it's bad and random enough to where I can't do much such as work regularly. If I could take off the days I fall in the floor or my side goes numb and can't pick things up, or my lungs decide to squeeze up and not let me breathe well then that would be great.

When these things happen it's like it takes me a few days to get better from it enough to function well. I refuse to drive alone because my arm & leg went semi-dead while driving and I had to stop the car and let my sister drive. If I didn't have someone to either drive me or a person who can drive, ride with me, then I'd get no where, including doctors. The small town i live in has next to zero public transportation and even if they did, on the days I have these spells/attacks/what ever you wanna call them, I often can't speak well, can't say what I am trying to say, confused, and can't think or focus.

NOW, I had testing for B12 and some others done will know what's up with that tomorrow. I have a brain MRI in a week and also, have to wear a holter monitor the day before the MRI to see what's up with my heart.

GOD I PRAYYYY IT's ONLY LOW B12! BUT he said it very well could be MS. Thing is, I have been pushed away and not taken seriously by some doc's before but back then I had no insurance and could not get proper testing done. I read about one person on here who HAD MS but was told for a long time they did not cause brain MRI did not show lesions... Later they did some spine scan or something and found lesions there, I think... So, why not just do MRI for brain and spine at once? I'm worried the brain thing will be clear, then that leaves me not knowing about the spine -joy.

This is my PCP running these scans and he might send me to a neurologist after we see what my tests say. I think I should see an ENT and a Neuro doc since my main probs are swallowing and weird nerve sensations (pricking, burning, tingling, etc)..

and heck, I might even need a good shrink after this is all over..... I'm so tired... Tired of searching, tired of trying to get people to believe me since my symptoms are random a few people think it's in my head. The anxiety might very well be since it seems to be secondary to my pain or asthma -I'm not superman though, anyone with sudden horrible pains or no air is going to feel some anxiety.

Sorry for the long post but there has just been so many doctors, symptoms, problems adding up, nothing helping, no one can pin point my test results, everything good is short lived, I'm getting a little depressed with all of this I think.........
I don't want to be Dx'd with anything un-fixable, but no one does..... At the same time, I just want to be Dx'd and get it over with.... The searching on top of suffering is more than I can handle. It's been yearrrrrs now.

Pray for me, please, that one of these tests hold the answer.......

In the mean time, anyone have any good ideas for making money from home/home based business? I want to work really bad, but my body is just too unstable to work for someone out of my home.... At least here, I can crash for an hour or 2 to get myself back together in the midst of working.

ahhhhhhhh........ if i could just go back in time when i was not ill......
Does all of this sound like MS to you or should I just give it up and succumb to it all being in my head? My new pcp thinks it's "somthing", just not sure what yet..... I'm affraid if my tests don't show something soon that even he will stop believing me...... Thanks for reading my post.

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Old 12-30-2006, 07:33 AM   #2
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling bad

Your PCP is off to a good start.He's checking all avenues to why you have the symptoms you do.
A low B-12 level will mimic MS and cause similiar symptoms,the tingling and numbness ect.
Having all the symptoms you do kidney infections,asthma who wouldn't have anxiety.Many of us with MS have been treated for anxiety or depression it comes along with the disease.
There are some here that have been in limbo land 5+ years waiting for a diagnosis.
I was diagnosed with MS without leasions,but other test proved it other wise.A DX of MS is usually confirmed by the MRI's and today is the golden standard.But there's other test that can be done besides the MRI's.
Keeping a journal of your symptoms will not only help you but also your DRs.Getting copies of all your medical records will also help.
I was diagnosed after seeing 13 Drs.I took all my medical records,test results,a nice little DVD with MRI's on it to a new neurologist and ask him to go over the test results with me.It took about an hour and a half.After his examination and reveiwing test resulys he said its definatly MS.I said theres no lesions,5- 10% of MSers may not have lesions for 5-10 years.
Don't feel as if you are losing your mind or going crazy,you know the symptoms are real,keep persuing a diagnosis.

Old 12-31-2006, 12:48 AM   #3
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling

My advice to you is to definitely keep pursuing the diagnosis but don't let yourself get stuck thinking it's MS. You want to make sure you keep an open mind. MS symptoms mimc so many other things and, honestly, many of your symptoms don't seem common to what I've read and know about MS, not to say it isn't MS just that it could be something else entirely. There is obviously something going on so find a doctor you trust and keep pushing. To rule out or diagnosis MS, you'll need to have a MRI of the brain and spine, a Lumbar Puncture, evoked potential tests and lots of blood work.

Good luck and keep posting. It does help.

Old 12-31-2006, 11:03 AM   #4
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling bad

no matter what happens, get yourself a good holistic medicine doc. most GPs, with complex web of symptoms, will just gloss you over and take care of the ones that are super nasty.
a good holistic doc (mine's a chiropractor/acupuncturist, with a massage therapist, nutritionist and sports rehab guy in office) will get a full history and look at the relationship of symptoms and your lifestyle and habits to treat YOU as a person, rather than just flare ups of some random symptom. thats been the best thing for me

Old 01-01-2007, 08:48 PM   #5
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling bad

I'm losing my mind waiting for a DX. I've had mutliple symptoms for YEARS and was blown off by my GP as being overstressed, hormonal, whatever.. I've been having dragging of my left leg on and off for the last year. Had episodes of unexplained headaches in my 20's, abnormal eeg at 18 (Dr. could not explain why so he took me off birth control pills). Memory problems started in my 30's and over the last year I've been having falling episodes, eye pain and over Thanksgiving I started with "crazy talk." It had been happening on and off for years with just gobbledy **** coming out at stressful moments (my kids loved it, thought it was hilarious). They got concerned over TKX-giving though when I started calling things by the totally wrong names and could not talk at all at times. I have a new GP and I went to him totally freaked out because of the ice pick feeling I have in my left eye and the droopy left leg and dropsy in my left hand (I was back there in July because of bladder emptying for no good reason and they found no problem, urologist shoved some pills at me and said come back in 3 months). Blood work came back normal but MRI showed "abnormal uptake in various locations of white matter." He couldn't tell me what that meant and told me he was going to get with the neuro he uses the first part of this week because everyone is on vacation.

Anyway, I'm losing my mind he gave me prescript for 1mg xanax and told me he'd call me back. I'm about to go to the ER and DEMAND that a neuro review my films and give me an answer. I feel like I"ve lost 20 years of a possible DX because from my research it's like all the pieces of the puzzle are falling together and I"m furious with my old GP (who is now retired of course). My husband says to wait and see what this GP says and to follow his lead. I'm wanting to make an appt tomorrow and tell him to get me and appt with a neuro ASAP. I have a friend with MS and she basically told me to prepare myself for a positive DX.

Any advice from anyone? I'm twitching and jerking all over the place and driving my family crazy...........

Old 01-07-2007, 05:10 PM   #6
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling bad

Well, my b12 was normal at 689 & calcium was 10.1 or something like that which was on the high range of normal so that's ruled out as a cause/problem.
I have to do the holter monitor tomorrow and see and ENT then comes the brain scan the day after so we'll see. Part of me wants a dx because the alternative is giving into it all just being in my head which it not a booboo i can fix easily or even medicate w/o a LOT of trial and error along the way IF it even helps at all.... Wow.. sorry, had a hypocon-moment there for a sec...
Gotta slap myself once in a while..... this is all just so frustrating. waiting, waiting, testing, no results, start again, doctor gets weird, then I get weird and then the whole darn thing is weird.

Old 01-07-2007, 09:11 PM   #7
kiwi girl
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling bad

T-Panic, hope you get an answer. Wanted to let you know about my prob with swallowing, about 11 yrs ago i had to have an op to stop acid reflux and fix a hernia, then about 6 yrs ago i started chocking, firstly they did the test called barrier meal, had swallow a mashmallow and it got stuck on the xray, so they called me back to have another test where they got me to eat some toast, and i think injected me with dye and followed the process of the toast. they discovered that the muscle in my eosaphagus was not working properly, out of evey 10 swallows, the muscle did not work six times.

Food gets stuck when i eat, but my main prob is with liquids.
Good luck

Old 01-08-2007, 04:36 AM   #8
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling

Not sure what it is - don't worry, whatever it is will slowly ease and may go away over time by breathing. The body can control and fight any health condition - it just needs help, and that help is extra breathing to create extra fighter cells in the blood.While waiting for diagnosis or results or appointmemts instead of sitting and worrying it is better to do the breathing exercises to help your body and relax yourself.
The Yoga Pranayam (breathing exercises) are:

Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.Duration upto 5 minutes.

Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in will happen automatically. Establish a rhythm and do for upto 20 minutes twice a day.(Max 60 min/day) Not for pregnant women. Seriously ill people do it very gently.

Anulom Vilom - Deep Breath-in through left nostril keeping right nostril closed
then - Breath-out through right nostril keeping left nostril closed
then -Deep Breath-in through right nostril keeping left nostril closed
then - Breath-out through left nostril keeping right nostril closed
and repeat this cycle for upto 20 minutes twice a day(maximum 60 min/day).

Tips : Breathe into lungs not into stomach. Do not hurry. Do it slowly. Rest whenever needed (in any pranayam).Can be done in sitting position, standing or lying in bed(if bed-bound).Keep tissues handy, as a lot of mucous from lungs will be coming through the nose.Try and do pranayam before meals.
How does it work:
Pranayam is about getting more oxygen into the lungs and sending it around the body via blood to aid in body repair. With extra oxygen more platelets and red blood cells are formed to build up the immune system.Extra fat is burned to reduce weight. All this happens naturally without side-effects.People with all types of ailments including incurable ones will benefit. This has been practised by sages, but has been simplified and brought to the masses by Ramdev.
Start with bhastrika and anulon vilom and start kapalbhati after 4 days. You will start feeling better after two weeks.
Tell the medical advisor that you are doing pranayam and also tell others. Only by trying you will discover the benefits and then tell others via this board.

Last edited by koyla86; 01-09-2007 at 02:56 AM.

Old 01-08-2007, 02:58 PM   #9
kiwi girl
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling

Hay, KOYLA86. Your not sure what it is, good for you. Are you a neuro. People have the right to try what ever they feel will help them. I meditate.
I really don;t think that you should be saying that the awful problems that people are suffering will go away and be all better if they do yr breathing practise. If only it were that simple

Last edited by kiwi girl; 01-08-2007 at 02:59 PM.

Old 01-13-2007, 07:31 PM   #10
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling

I agree with you both. Breathing wont make real problems such as MS go away. BUT breathing exercises that I learned to distract myself in order to weaken neural paths that were unhealthy for me which sort of burned some bad thinking/reacting in my mind... That was very good for me.. The problem is you have to keep doing it or it too fades away. But it helped a lot when I used to have a lot of anxiety after feeling bad, pain, or what ever would set it off.... It helped me to sort of unlearn a habbit of "reacting" overly tense to something I would think, hear or feel and I later became more comfortable with all these things and about 90% got rid of my anxiety reaction to things I am a lot more calm with now. So thank you for the breathing exercise info koyla. The one that was easiest for me to "get it" and absorbe it fully was from a book called, "neuralpath therapy" and it helped me a lot at that point in my life.
And thank you for sticking up for us all kiwi girl! It gets old being told it's all in our heads or not being taken seriously. I don't think koyla was questioning us really but more trying help out by showing a way familiar to them that helps to calm and relax when things are bad. It works for some and not for others. I can use all the breathing exercises, relaxation, etc., in the world and it does help but it doesn't take away all my "physical" pains/problems. I have some pretty weird stuff going on and I'm tired of it. Can I just trade this body in for a new one? Any offers?

Old 01-13-2007, 08:31 PM   #11
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Re: Symptoms stacked to the sky, no Dx "yet", say's might be MS, am I crazy? Feeling

Hi, I can see where he is coming from, it's just that sometimes people get so obsessed about a therpay that they think it will cure all.
I think i said i meditate and that is wonderful, this type of meditation really takes you out of yr body but it still does not take my pain away or my symptom.
Also i have over the yrs spent thousands of dollar on therapies, where you get told yes we can make it all better for you, and because you are so vunurable and desperate you will try anything.
i also feel i have lost 20 yrs of my life. As for trading bodies, think i stick with the defected one i have, sorry
Hang in there

Last edited by kiwi girl; 01-13-2007 at 08:33 PM. Reason: missed letter in a word

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