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Quix-Could you please HELP!
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Quix-Could you please HELP!

Well this all started sometime in March of 2007 with numbness in left pinky finger. That was the only symptom back then and I never really paid attention to it. It would stay numb for a few hours in the morning and that was it. After that I really I used to get fatigued regularly so I thought it was because of work and since every new day I was fine, I just did not care about it. I have had IBS for 10 years or so, and I was using immodium very regularly (like 2 tablets every second day for 3 years in a row, until I started to use fiber and the I quit immodium). Anyways, on July 27th 2007 I had pain in my left arm. It was shooting pain from under my arm pit to the hand. I would have tingling in chest also. So I went to ER. Next day my PCP referred me to a Cardiologist. They did the following tests:
1. Blood Work
2. CT Scan
3. Stress Analysis Test using some kinda liquid
4. Ultra Sound of Heart Valves
Everything was Normal. I was told its in your head. May be it was. For the next 3 weeks, I was fine. No fatigue no pain whatsoever. Then in late August I was in washroom taking shower when I felt severe weakness again. Went to the Cardiologist again and this time they checked main arteries connecting to the heart. Again result was ok. Then I was referred to a Neurologist. This time I felt fatigued for almost 3 weeks. There was no tingling sensations at this point. Only fatigue, weakness in legs and arms and pain ONLY in left arm, same general area. No chest Pains. I was told to do the following tests by neurologist:
1. Evoked Potential
2. MRI of Brain and Cervical Spine
3. Lyme disease check
During this time I had been to the ER twice and seen my PCP like 5 times, in a period between Aug 28th 2007 to Oct 30th 2007. Everything came back normal was waiting on my MRI results when I again felt pain in left arm and went to Johns Hopkins on Nov 5th 2007, to see a Cardiologist. He suggested  he is 100% sure , that my heart is fine. He thought its your neck may be, but don’t do any tests, may be you will never find out what’s wrong.  Just chill.
3 Days later MRI results come and my PCP called me. Now I am again in some kinda remission mode, as no symptoms at all. No fatigue nothing. Anyways, MRI showed a 5mm lesion in my cervical spine. So I go back to my neurologist and he says it may be very early stage of MS. I was like whats that and he said we don’t have a diagnosis yet, so he cannot explain. I was like OK. I was asked to do LP and another MRI. I did the MRI on Dec 3rd 2007 but didn’t do the LP until today.
I wanted a second opinion so went to the 2nd neurologist also at Hopkins. (Hopkins is like 2 hrs drive from my house). The neuro said, after looking at my new and old MRI films that he thought the scar on 1st MRI is artifactual and he proved it by showing a line going through the spinal fluid area. He said you are fine. Your Brain looks beautiful and your cervical is absolutely fine as well as your thoerasic. He said in worse case situation come after 1 year and we will do MS testing, if even needed. Right now, he thought I don’t have any MS related symptoms. MRI is clean and there is no need for LP.
After that I felt ok for a few days, I did not have weakness or fatigue as I used to have, however, I had new symptoms. Like everything was loud to me at times, people talking around me made me uncomfortable, then I would have this one ear close suddenly for a few seconds. Tingling started to happen, mostly in arms and hand and feet. Sometimes in abdomen also. In late December 2007, my neck would feel tight. I would feel severe tightness in my neck. Then this weird sound in left year as if I am sitting in a plane. It would come and go. Again, fatigue was not there. I would go and work and do everything. Right now as I type my symptoms are:
Left arm pain, Tingling all over body, Today I had been typing in office for like 10 min, and as I moved my hand my right arm below elbow felt very weak and with severe pain I could not lift anything for like 10 min. Then everything was just normal. I still have that slight pain, but I can lift things easily. I still feel that my both arms are very weak, just comparing with what it was in July, back then I never had weakness in arms. Doctor’s say I don’t have MS or one said, just wait and see. See what???  My symptoms are with me very day nowdays, whether it is tingling or tightness in neck or pain in arm or weakness in arm. However, NO TWO SYMPTOMS OCCUR SIMULATANIOUSLY , MEANING IF I AM HAVING LEFT ARM PAIN(FROM WHERE IT ALL STARTED) I WONT HAVE RIGHT ARM PAIN, TINGLING COME AND GOES, I ONLY FEEL IT FOR LIKE 5 SECONDS and then  its gone. I am doing an LP on Jan 14th and see a spine specialist on Jan 17th. I have also felt lately that I have ZAPS, I mean those electric shock like things in my arms.
Could all this be due to some neurological changes in me, e.g may be new nerves, damage to nerves(but how, if not MS). I thought Doctor’s would eliminate very other thing and then talk about MS, here its just the opposite. Are these symptoms, totally insync with MS.  But if no lesions and even if LP is ok then what can be wrong. I’ve heard that in medical science human body’s neuro system is only 25% understood by medical science as compared to Heart which is like almost 100% understood by doctors. Is this true? Could you pleasee tell me, what other diseases, these symptoms suggest?
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228463_tn?1216765121
I just wanted to let you know Quix is not feeling well tonight so she will probably not be back on, but I wanted to welcome you to the Forum!

I am having trouble reading tonight butI am sure you will have others come along soonwith some words of wisdom.

((HUGS))
Kristin
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195469_tn?1388326488
I am still not convinced that these symptoms are not coming from compression of some sort in your cervical spine.  I had a car accident with cervical damage in 1980 and these symptoms are highly suggestive TO ME, that something is going on in your C-spine.  I can't say that I agree with the doctor that your "lesion" was an artifact.  Gosh have I heard this from a doctor before.  He was convinced that my cervial lesion and my thoracic lesion were artifacts.

I'd like to stick those "artifact" on him where the sun doesn't shine.  Now as the years have gone by, the "artifacts" have shown to take up the contrast dye and symptoms relapse and remit.  Today's Neurologist says that these lesions are indeed NOt artifacts, but true lesions.  Since I also have lesions in the brain, it wasn't hard to figure out my true diagnosis.

If you feel that you are not getting the answers that you are seeking to your questions, than as usual, I have to say that it's time to see a doctor that will take your complaints seriously.  Something is going on.  Is it MS?  Well, your symptoms would not come and go like you have described.  Could this be early MS..yes it's possible.

Needless to say, you need a through follow up of your symptoms.  And please, by all means, reduce your stress level as much as you can.  Don't want one of these doctor's saying this is all in your head.  (One of their favorite sayings, by the way)  I've always wondered that if it were their loved ones sitting in front of them, if they would tell them the same thing.

I hope you feel better and Quix will do her best, I am sure, to get back with you.  She has alot of people that need answers from her and she always does her best to try and catch up with them.  That is not always possible, even when you are feeling well.  She had a fall a little while back and sprained her wrist and she is having a hard time typing.  Try to hang in there.  If she is able to get back with you, she most definitely will.  She is tireless in her efforts to try and be there for everyone.  She has alot of her own diffculties to go through and we all need to be patient.  She is doing her best.  Gosh, we owe her SO much, don't we?

God Bless you honey and I hope you see some improvement in your symptoms soon.  We are with you, all the way.

Gentle (((HUGS))))

Heather    
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Like always, I really appreciate your detailed response. To your question regarding the lesion which the Doctor thought was an artifact, on the next MRI in the same area it was not to be seen. Both the MRI's were done on 3-Tesla magnet(is that wat they call it?). But I also know that lesions can appear and disappear as per some kinda study done years ago. Anyways, I will be seeing a spinal specialist next week, and if he still thinks its nothing then I might wana go to a new neuro. From what I have read from all our discussions over months and months, I feel that one of the basic MS symptoms is General Fatigue. But I dont seem to have that anymore, I used to have that a lot from Aug to Oct mid but since then I am ok. Just weakness in arms off and on. Now this new symptom where I feel that there is this flickering in my right arm deep inside like flickering of nerve. anyways, i dont wana sound crazy, have a great day u all and I hope Quix feels better.
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246236_tn?1275482502
Zombie - it's so frustrating when doctor's don't seem willing or able to help you.  Lately I've been getting that very same thing in my ear that you are describing.  I called it a "whooshing" sound, but I like the way you described it...

Heather or anyone who knows - do you have any idea what this sound is?  I go to the neuro on February 9th and I plan to ask him then, but it's kind of worrisome!  It doesn't hurt, it's just an odd sound/feeling to have.

Angela
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Have they diagnosed anything in ur case? do u mind telling me ur early symptoms.
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246236_tn?1275482502
Pain was a symptom for years, along with on and off numbness in fingertips.  In 2/07, I was increasingly fatigued and in 6/07 my fingertips went totally numb.  This spread to my my whole left arm.  Left side of face numb and tingling.  Numbness and stiffness on left side of neck.  Severe weakness on left side.  Fumbling when picking things up.  Memory slips.  More headaches.  More areas of numbness patches throughout various parts of body.  Running into things.  These are many of the symptoms I've dealt with since last February.  I had an MRI in August and learned I had at least 4 lesions in my brain and an 8mm lesion in my cervical.  I have an MRI on the thorasic in February.  I was diagnosed with MS on 11/9/07.  Hope this helps!  Angela
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I just thought of something and decided to share. I will be talking in layman's terms. We all know how this MS happens. However, I am trying to question something here.  As I understand this, for someone to have MS, the nerve's have to be damaged right? The damaged area then becomes a scar/lesion later on right?  This process of nervous system damage can occur long before the early symptoms show up right? That means, if some one does not have damaged nerves, they wont have lesions, and if they dont have lesions,  they cannot have MS. But then 5% MSers have no lesions(well they will have lesions, for heaven's sake, those lesions will not be seen on old MRI machines), so my point is lesions have to be there for MS to happen, its not relevant if they can be seen on MRI or not. So then my point is No Doctor can make a judgement on someone having MS, if they cannot see any lesions, does NOT matter if MRI machine is screwed up or old or whatever. If the Physician cannot prove that Mylin (is this right spelling) is damaged, he cannot say ohh you have MS, thats pure BS. I need some input on this also.
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147426_tn?1317269232
Hi, I will try to answer your questions.  First I want to talk about your last post about not having MRI lesions, but still having MS.  In a sense you are right.  If a person has suggestive symptoms in a suggestive pattern, they will usually have at least some abnormality on a carefully done neuro exam.  Certain abnormalities on the neuro exam are proof of lesions in the brain or spine.  I didn't see a mention of your neuro exam and whether it seemed very detailed to you.

All the good literature I've seen states that some number of people with MS may have a normal MRI at some point in their disease.  My most detailed, carefully written book says "Most people will have MRI lesions."  If it were 100%, believe me this guy would have stated this and cited the studies that show it.

The reality is that the vast majority of doctors will not consider MS without MRI evidence.  But, if they would take a really thorough hisory and physical they would have more evidence to diagnose and some people would qualify for a definite diagnosis.

The internationally accepted McDonald Criteria even allow for a diagnosis of MS without any MRI at all, though they recommend doing one as a baseline.  However, the people must be having a pretty classic course of MS.  They must have a history of two clear relapses (attacks of symptoms old and/or new) separated by a clear remssion (at least a month of no symptoms, or of symptoms completely stable in severity).

Then they must show objective evidence during each attack of a lesion in the central nervous system.  Now the requirement that the evidence be objective means the examiner has to "see" the problem.  Reports from the patient are not sufficient here.  So if a patient says, my hand tingles then that isn't enough info.  Even on the sensory exam saying "it doesn't feel sharp on that hand," isn't enough, because the patient may not be reporting accurately.

So the examiner looks for signs (rather than symptoms) like hyperactive reflexes, paleness of the optic nerve, a positive Babinski or Hoffman's test, abnormal eye movements, difficulties with strength or coordination, problems with rapidly alternating hand movements and there are many others.

Secondly, a new and different sign must appear during the seond, or later attack, showing that new damage has occurred in a new and different location.

These two things together showed that the disease (MS) is occurring "over time"  and is occurring in "different places" in the nervous system.  These two things can show definite clinical MS and we have had people here diagnosed this way.  But, the signs and the attack pattern have to be pretty classic to make the diagnosis on these alone, AND the neurologist needs to have a great deal of understanding about the disease process (as it is currently understood) AND this neurologist must have a great deal of self confidence.

Now, this is what they used, along with the spinal tap, 30 years ago.  But, now we have better "para"clinical testing to confirm the diagnosis.  And most doctors just will not consider the diagnosis without the visible lesions and/or a + spinal tap.  This is unfortunate, but is the reality.

As you accumulate more and more negatives (negative MRI, negative lp, negative evoked potentials) the likelihood of your having MS also drops below a 1 in 20 (5%) chance, but it doesn't disappear.  It is also all the more likely that you won't find someone to call the diagnosis.  If, on top of having negative testing, if your history just isn't very classic, or your neurol exam truly is normal, then diagnosis at this time is impossible.

As I read your history it didn't seem "classic", especially the fleeting nature of the symptoms.

On the other hand a 5mm lesion in the spinal cord is rather large to be an artifact.  It depends on how it appeared.  If it was an irregular, ratty looking area that just looked different, it could well have been a gltich in the signal.  But, if it was clearly defined and seen on different cuts in the different planes, then it sounds much more like a true lesion.  And, yes lesions disappear all the time.  The body is able to repair many damaged areas, though not usually perfectly.  I think you should have  your series of spinal films reviewed by another neuroradiologist.

Also, make sure you had truly had a careful neurologic history and physical.  We can help you here put all of your info into a form that makes more sense to a neurologist.  I do think you should get a 2nd or 3rd opinion.

Quix
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Would you please expand upon your statement "We can help you here put all of your info into a form that makes more sense to a neurologist."

Thanks,
Suzanne
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147426_tn?1317269232
I mean by the use of a carefully written Timeline.  We have a whole thread on this Called Timeline 101 and I hope someone can find it and bump it to the front.  

I'll talk about it later.

Quix
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Thank you; that very post is one of an assortment that I saved!

I did make a timeline for my visit with my pcp yesterday. I gave it to the lady at the desk to attach to my file. The dr. tapped it when he came in to see me and asked "What's this book here?" I kept it in bulleted format, brief, and it was only 41/2 pages long.

Hmph to him. (And I usually like my dr., but yesterday he seemed to be getting me annoyed...........!!)

Suzanne
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147426_tn?1317269232
Not all doctors will pay attention.  That they are annoyed or don't care gives us some good info about the kind of doctor/erson they are.  I still believe it gives some of the best info they could be looking for.  

It's true.  Some people have had their efforts brushed off, but others say it has made a world of difference.  Also, just having taken the time to do it will put you in better command of your history.

Sorry your doc reacted that way.  

quix
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Hi guys,

Quix I hope your are feeling better and I am glad you are back in the saddle again!!!! Welcome!!!!!

You know Zombie's post and your last post reminds me when I first visited my good neuro.  I was really sick and I was telling her my saga and she asked me if I was sure that the doctors I had been to were neuros, I gave the names of all the 5 that I have been to and asked her if she knew them.  She said she did.

At that time I was being treated by internal medicine doctor, who I went to schol with and who has been a very closed friend, he decided to sent to the hospital for steroids treatment because I was loosing my sight.

My neuro requested an MRI, blood test and scheduled to see me in two weeks.  I was at the hospital for a 5 day steroids treatment and then had the tests done,  When I returned to my neuro's appointment with the test results, my MRI came normal, but she said that when visited her offices for the first time, she knew that I had all the typical symptoms of MS and asked me if I was willing to have an LP done.  I said that I would do anything to help myself.  I had my LP done and it came out with the 5 bands and something else, which I do not rembember what it is called, typical to MS, and thus my MS dx.

My point is that we have to try to convince our doctors, whom we pay for their services and how we pay!!!!!!, that the symptoms are not only in our heads, they are also in our hands, legs, feet, arms, you get my grip????

If one is not convinced of our symptoms, we should not give up in our quest for a dx.  We should keep knocking on doors until we find someone who would listen to us and believe in what we have and treats us for what we have.

I hope I have made some sense to all of you.  Just remember We have MS, but MS does not have us!!!!!!

Zulma
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807381_tn?1245086711
I just read everything you've written, and you seem very knowledgeable.  I am very frustrated and wondering if you can help me?

Summer 2006, I started getting severe pain in my left temple.  It truely felt like a knife was slowing being inserted.  This was not a stabbing pain, but constant and severe.  It lasted for 2 months, sometimes it was not as bad as other times, but it was constant.  I was told by my primary md that he thought I had trigeminal neuralgia.  It was much worse in the heat and bright light.  Pain radiated down my face.  I couldn't stand any "extra" noise.  Like if one person would talk to me and the tv was on, I could only hear one thing.  I was put on Topomax (topamax) and had miraculous results.  I did have some side effects from the Topomax (topamax), but they weren't bad.  And I lost 80 lbs!!!

About a year after that, summer of 2007, the Topomax (topamax) stopped working.  I thought I was going to die.  MRI showed no signs of trigeminal neuralgia so I was told that "it must be atypical migraines"  hmmm.  I was placed on Propanolol.  I have only had about 2 "migraines" since being on the propanolol.  No side effects.

Then in  March of 2008, my mother in law moved in with us due to complications from a surgery.  I ended up being her health care giver.  It was EXTREMELY stressful and we ended up in marriage counseling over it.... BUT during that time, EXACTLY one year today, I had what felt like a spot of heat in my left thigh.  It felt like getting burned from the inside.  I was like... hhhmmm weird.  But when it didn't get better, I went to the doc because I thought maybe a blood clot. Also, when the headaches started, I have since had a continual buzzing in my left year.  He said he thought it was ms, and sent me to a neuro.  He took FOUR MONTHS to get into, then ordered a new mri.  He said that there is no sign of ms, must just be hormones.

I have had continuing worsening of symptoms over the past year.  There is not an hour that goes by without something.  NOW my symptoms are decreased feeling in face. Extreme periods of pain in neck, but only on one side at a time.  Shock like sensations up and down my spine, but mostly in the middle of my back, and now the shock like sensations burn as well.  Random pain and tingling in legs and arms.  A sensation that feels like an arm band around my upper arms. Muscle twitches, weird feelings of vibrations in my legs.  Sharp stabbing pains in the bottoms of my feet.  Muscles around the eye, left eye only twitching.  Lips tingling.  Throat having a sensation of closing.  Foggy brain, hard to communicate all the time.  I can talk, I just have a hard time formulating the words.  But NO HEADACHE.  Yeah for me, the migraines are through. LOL.  So the neuro orders a brain test with some scan.  Negative.  Mri.  Nothing.  Blood work.  SOMETHING.  Yeah for me!  NOT CRAZY!!  It is a "PROFOUND" b12 deficiency.  This can mimic ms apparently, so I start taking injections.  Once a DAY of a week, then once a week for 6, and now I am on once every 4.(It's been about 7 months of b12)  Blood work shows that levels are now normal, but all the above symptoms are WORSE.  Now I get pain in my left thigh that feels very deep, like in the bone.  I have pain in my back and sometimes pain in my arms.  The hot spots are throughout my whole body, so is the twitching.  Everything is getting worse.  Also, I have poor heat sensitivity.  I got hot the other day and my skin flushed.  I felt like I was on fire.  It hurt so bad through my whole body and I had to get cold.  I took a cold shower and then layed down and was back to "normal" about an hour after.  Called neuro, he said hormones...early menopause, but ordered a new blood work up and a spinal tap.  

The spinal tap showed "slighty elevated protien levels", but was probably caused by stress, so says neuro.  Now he has a SUPER FUNNY joke about "drilling holes in me and letting out the evil spirits".

Then my left eye started to HURT.  Nothing relieved it.  Called neuro, he referred me to an optomologist who said I had nerve inflamation (inflammation) in that eye only.  Good news though, I have 20/20 vision.  He said he thought it was allergies, which I dont have, and prescribed prednisone drops.  The drops kind of worked, but not really.  After I stopped them, the pain came back.  He looked again and said that he just didn't know, but here are some allergy drops.  I never used them, but suddenly, my eye stopped hurting.  It hasn't hurt since (about 2 weeks).

NOW neuro has referred me to University of Utah medical center to an ms specialist..  What????  I thought there was no sign of ms????  Appointment is in JUNE.  I am freaked out.  Does this sound like ms to you?  I am not wanting to "borrow trouble"  but seriously, if not ms, then WHAT????

Thanks for any advice or help you can give me.
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My daughter started having symptoms about three years ago.  It started in November with her feet feeling stiff in the morning.  That progressed to her feet swelling, then numbness and tingling.  She works for her PCP, he is aware that she was diagnosed at 17 with Fibromyalga (fibromyalgia) and assumed it had something to do with that. She was also diagnosed with Hashimoto's Thyroiditis. She continued with life in general, just ignoring the symptoms til one day in late February, early March, she told me the numbness and tingling was moving up her legs.  I said she needed to get that checked.  She went into work the next day, by afternoon the numbness and tingling was up to her upper thigh and was also in her hands and lower arms.  I got a call to come get her and bring her to the ER.  They thought she had Guenne Barre Syndrome.  We went to the local hospital, who sent us by ambulance to Mass General in Boston.  My daughter was in the hospital for a week.  She was unable to walk, she was having sever numbness, weakness and balance issues.  She also would have trouble remembering things.  My daughter always had almost photographic memory.  She was discharged with a diagnosis of Hashimoto's encephalopathy after having two rounds of iv steroids.  She was told to go to the ER if the symptoms came back.  She left on Wed. and we were in the ER on Sun. We were told to go to a neurologist, we went and he was no help.  Said she looked beautiful and didn't look sick at all.  Great.  Her PCP put her back on steroids to help with the symptoms.  I drove her to Mayo Clinic in Rochester Mi.  They couldn't help much because she was on steroids, and she has a lypoma in her brain that makes some Doctors nervous to do a spinal tap.  By then she was so sick of doctors she said she was just going to have to get use to the symptoms and move on.  Then in June she was feeling better, she felt great from June to November.  In November the symptoms started all over again, exactly like before until in March we were back down to Mass General ER.  Still no answers. March we spent trying to see doctors and get more tests, No answers.  June, she was feeling better again.  Then in August, she was diagnosed with Celiac disease.  She has been very strict with her diet and was feeling so much better.  We hoped this was the answer.  :Yet November came along and so did the numbness and tingling.  Here it is March and we are trying to decide which hospital to try.  Do we stick to Mass General and hope a doctor there will say:  Wow, this happens like clock work, something is going on.  Or do we try another hospital.  They have sent her to MS doctors along the way and they say because there are no lesions its not MS. But if it is the begining stages of MS.  Wouldn't it be better to diagnose it early and try to slow the process and decrease the damage or does that make too much sense.  HELP
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1858011_tn?1319840953
I know how everyone feels.  This is my story.  In may of 2009 I got injured transferring a patient.  On march 2010 I had a tri- level fusion.  I was walking on a walker but legs are very weak. But doing ok.  In September of last year I had 2 cases of cheat pain.  The first time they thought I had a stroke, my ARM was numb and I couldn't move it. So I was take to the hospital they ran a lot of test and ruled that out.  A couple weeks later it happened again only this time my ARM doesn't get any better.  And thing start going down hill for me.  To make a very long story short.  I'm not able to walk and I'm in a wheelchair.  I'm unable to move my whole right side.  I'm in pain everyday and I've gone through pt and it. For about 5 months.  It hasn't helped. I've seen 2 neuro who say all my test are normal. I believe differently. And they are basically saying its mental.  Something is very wrong. And I don't know where to turn.  I have dizzy spills everyday, I'm naused, and I have blatter and bowel problems. I was having tremors very bad so the doctor put me on a med for them.  But the side effects were so bad I stopped taking them.  Since then they have gotten better, now its just my left leg shakes every now and again.  God bless my husband. He has been there for me because I'm unable to get out of bed myself nor do anything for myself.  I have right shoulder pain, hip pain and leg pain.  I don't know what to do I'm lost and very scared that something will happen to me before they figure out what's wrong.  I try to stay positive and I have a lot of faith in god. But, it very hard.  Especially being only 34 with three beautiful girls.  To see them actually taking care of there mom sometimes it can be very upsetting for me at times.  My heart really goes out to everyone who is living through this. And it nice to know your not alone.  God class you.  Can anyone offer any advice to me. My name is misty.
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