NO diagnosis, please help!!!

[E]

Dear Doctor:  I find this websit amazing and congratulateyou all for the time you put forth into helping the public.  My question is a bit long....but hope you can shed some light on my problem...In february, in my 8th month of pregnancy, i began having numbness on complete left side of body including my cheek and eye.  Went to a neurologist who ran a complete line of blood work, all negative and an MRI of the brain..normal!  His first initial response was MS...he told me to come back after having the baby and we would do a new blood work up at that time...In June, i began having a lump feeling in my throat..went to an ENT and he said probably muscle spasms..did barium swallow, normal.  Next in July, i literally became ill and could not get out of bed for a week.. total fatigue, dizziness..etc.  basically flu like symptoms..after recovering, i developed buzzing sensation in legs, twitches or sometimes jolts in my body, weakness feeling (heaviness) in my legs and arms.  My neurologist is stumped and at that time did a full spinal MRI and ANOTHER brain MRI which came back normal.  I continue to get the weakness (which comes and goes) and just not feel right.  i have trouble consentrating and sometimes get a foggy feeling.  My doctor still does not believe it is MS.  he just ordered a visual evoked test which im awaiting results sincei was having a hard time focusing in one eye for about 1 week.  NOW my throat thing has become so bothersome..my neck is tender to the touch and sometimes i feel im having a hard time swallowing which does not seem to go away whatsoever..I know stress is definetly incorporated into all of this..and with the twitching and throat problam since i have been on an emotional rollercoaster..i became nervuous about ALS..(im 33 female).  Also having shortness in breath.  What is your feeling on all of this...the only bloodwork i did not have was B-12 test. the numbess on left side still comes and goes.  I think my neurolgist thinks im nuts!  He says i have too many things going on at once...what areyour thoughts???Thank you for your time!  I am just tired of not knowing what is wrong!!!!

[CCF Neuro[P] MD, RPS]

Dear E:

Sorry that your having such problems.  I am not sure what to tell you.  The fact that your MRI of brain and spine are normal is always a good sign.  However, that usually places MS very low on the list of possibilities.  The usual definition of MRI brain lesions, is that you need to have at least 3 that are of various ages.  Obviously you do not meet that criteria.  There is little in the way of blood work that would give you a diagnosis of MS.  Sensory findings and motor weakness can be a part of MS, but with a normal neurological exam and MRI likely not a diagnosis at this point in time.  ALS does not present with sensory changes and usually does not have sensory symptoms during the disease.  ALS is not likely in your case.  One can get peripheral nervous system changes during pregnancy, but these are usually focal in nature, such as carpal tunnel and entrapment syndromes.  These are not wide spread as you describe your symtpoms.  Twitching can be benign and due to stress or it can be from a system illness such as post-viral, ALS, etc.  However, we usually see indicators in the medical history and you do not indicate much.  With the added stress of having a baby, I might explore the benign fasciculation possibility with your neurologist.  But again, I am handicapped by not being able to see and exam you.

Sincerely,

CCF Neuro MD

[E]

also, my muscles are always tired whenever im doing any type of excerise!! even just lifting my arms up..but again, it comes and goes!

[E]

thank you for your response..what do you make of the throat problem...it is so tender to the touch and has been since about july???  should i go on persuing a diagnosis?  You mention peripheral changes during pregnancy?  would it still cause problems 9 months later? what about b-12?  sound like a try?  What about fibromyalgia?  my most concern at this point is the throat problem.. thank you!

[Reenie]

I believe there exists and autoimmune "entity" which has not yet been named beyond "benign fascic syndrome" or "muscle cramp fascic syndrome."  I have been having the fasiculations for at least five years and through my many correspondences have found that MANY women start in with this syndrome around a big hormonal change such as pregnancy, lactation, or menopause (some have even said it started after a hysterectomy).  This is consistent with autoimmune disease - they all are triggered and impacted by female hormonal shifts.  In fact, they think that is why women comprise the vast majority of those with autoimmune diseases.  As for the throat problems, I have heard that many many times as well!  I have a few theories - one is that the actual throat muscles might be cramping, two it is a "globus hystericus" caused by the stress this syndrome induces," and three explore whether you might have gastritis.  I had it this summer and it caused a very nasty lump in the throat sensation.  Good luck and feel better - ***@****

[Penny]

Dear E,
When I was pregnant 3 years ago, I went through a horrible ordeal.  I was actually about 8 weeks postpartum, and for a moment, lost total control of my left arm.  I thought I was having a stroke.  I went to the ER by ambulance, had a CT of the head, was followed up by a neurologist, had a ton of blood work, and was basically told that it was stress.  Also, during all this, I had tingling, shortness of breath, extreme fatigue, and migraines.  I couldn't get any answers, except panic attacks, and stress.  I still have trouble believing that my symptoms were all caused by stress.  However, once I relaxed, and set my thinking on the fact that I wasn't dying, I gradual began to trust my body again, and am functioning great today.  I think hormones, and stress are a huge part of pregnancy and motherhood.  I also take
zoloft, which seemed to be what finally pulled me out of my fears. I hope hearing about my story, helps you to deal with your dilemia.  Good Luck.

[E]

penny:  thank you so much for your story!  No one has mentioned anxiety to me...My neurologist cant seem to find anything wrong, but also says its baffling my symptoms and wont give up finding what is causing these problems!  It has been 8 months now...im sure the stress and anxiety from all these scares has caused major anxiety!  i wont deny that!  Its nice to know that im not alone and your story helps put my mind to rest.!1 how long did it take for your body to go back to normal?  Is zoloft for anxiety?  thanks so much for your reply!

[Dear e]

It unfortunately took about 2 years for me to feel normal again.l I too was very frustrated with the doctors, I even began not to trust them anymore.  I was having all these weird symptoms, and they were saying the same thing your doctor said, that it was too many symptoms that didn't fit any disease.  I was so scared that they were missing something, and that I would never be able to be healthy again, or see my children grow up.  It was hard to resign myself to the fact that maybe I needed some form of antidepressant in order to get better, but I needed my life back. Zoloft is an antidepressant.  It works on the horomone serotonin, to increase your serotonin levels in your brain.  Serotonin is sometimes called the "feel good" horomone.  In addition, I began to exercise regularly, try to sleep more, quit trying to breastfeed(which was something causing me a lot of stress), and eat better.  I also started birth control pills, to ensure that all my horomones were in balance.  I still have a few doubts in the back of my mind, regarding my diagnosis, but I want to live life to it's fullest, and need to push on.  I think I was using my trips to the MD's as "out" for some of my anxiety.  Now, I spend my days running my kids places, instead of running to the doctor.  
Hope you feel better soon!!!!!!!!!!
Penny

[Lynn3]

Dear E
Stress and anxiety can cause a LOT of strange symptoms. I have suffered from a lot of the same symptoms that you described. They began shortly after my second son was born. My gynecologist discovered I had a thyroid disorder called toxic multinodular goiter. This was MY cause for a lot of those symptoms. Racing heart, fatigue, soreness in the neck, lump in the throat, muscle twitches, migraine, etc. etc. Just a thought, may be worth it to rule it out. The hormonal changes and stress of childbirth can actually cause a thyroid imbalance. Some thyroid disorders can actually CAUSE panic attacks. That was 16 years ago. A year after surgery I felt great! Now, 15 years later, I am having trouble with my thyroid again. Felt like it came out of nowhere. I have tingling in my hands and feet, my left hand aches and burns and at times my arm goes numb. There are so many similarities between both disorders. A couple of good sites are ... About.com  then click on thyroid. Or ithyroid.com. Or merk.com. Hope this helps and hope you feel better soon.
Lynn

[E]

thank you all for your anwers!  Lynn: i had a thyroid tet in June and it was all normal...would that still be the case if i had that type of thyroid problem?  also, did you say you had the tenderness?  also, sometime when i talk, it feels like im straining my vocal coards?  like they are tired?  did you have naything like that?  who would be the appropriate doctor to check this out with?  How long did it take for you to get a diagnosis?  thank you for all your help!  sorry for all the questions..its really weird though, i remember thinking from day one it might have something to do with thyroid, but all tests came back normal!  but my neck has def gotten worse!

[Thelma to JanB]

Dear e, I have some of the same symptoms that you are having, which started nearly 7 years ago when I was pregnant with my second child. It started as a tired feeling and then dizziness and being out of breath.  My muscles were extemely tired from doing routine things like folding laundry, walking up stairs, talking on the phone, unloading the dishwasher. The tired muscles were arms, legs, breathing and talking. It went away for a short while but returned when my daughter was about 3 months, then 3 months later this horrible itching, then bug crawling, then intense painful burning sensation started on my skin.  I am sorry to say that after all these years I still have these symptoms but they are partially controlled by medication.
     In the course of events I saw 3 internists, 4 neurologists, 3 dermatologists, 3 psychiatrists, 1 rheumatologist etc. The general consensus is that it is a metabolic, enzyme defect in the muscle although they have never come up with a concrete diagnosis.  These enzymes are still being discovered. They are responsible for converting food energy into a form the muscles can use.  I have had MRI's, EMG's, muscle biopsies, lung function tests, bloodwork, fasting blood sugar tests, barium swallow etc. The drugs i find most helpful are prozac, which relieves my burning skin and makes me less irritable and amantadine (an antiparkinson and antiviral drug) which also help the burning sensation and makes it easier to walk, move my arms breathe and talk.  My life is a challenge daily, but some days are definitely better than others and I still wonder if there is something hormonal involved.  Sorry this is long, I just want to encourage you that you are not alone and maybe you will find a medication that will help you.

[Dear e]

To everyone,  I just think it's a sad thing, that we all have weird symptoms and that no doctor could make a definite diagnosis.  If they can't figure it out, then you are usually made to feel like you're imagining it all.  I know that my doctors thought I was nuts, but I was frustrated that no one could ever give me an explanation.  
Seems like something happens to the body when you are pregnant.  It's like you get "rewired", and never go back the same way. My doctor mentioned that people with very early MS don't often show changes on tests, but have weird physical symptoms.  Out of no other choice, I resigned myself to the fact that it was anxiety, because time had passed and I wasn't getting any worse. Life has to go on.

[Reenie]

Thelma

I am curious, do you also have the muscle twitching/aching/cramping?

[kim]

Dear E.
I know what your feeling, 8 months ago I had a subtotal thyroidectomy that was substernal. I had hasimoto's thyroiditis for 7 years and had multi nodule goitre.  9 days after the surgery the whole right side of my body went numb, like yourself they worked me up like a lab rat, ran everything. I honestly think it has to do with the thyroid, but i've been to 4 endocronologists, 2 neurologists, and countless other doc's. The numbness is still there, and no one can figure it out. Sometimes it's numb other times its hypersensitive. If you would like you can email me, actually anyone who has experienced this please email me. ***@****  I really think this is from the thyroid, since thyroid controls so much in your body.
Kim

[kim]

Dear E.
I know what your feeling, 8 months ago I had a subtotal thyroidectomy that was substernal. I had hasimoto's thyroiditis for 7 years and had multi nodule goitre.  9 days after the surgery the whole right side of my body went numb, like yourself they worked me up like a lab rat, ran everything. I honestly think it has to do with the thyroid, but i've been to 4 endocronologists, 2 neurologists, and countless other doc's. The numbness is still there, and no one can figure it out. Sometimes it's numb other times its hypersensitive. If you would like you can email me, actually anyone who has experienced this please email me. ***@****  I really think this is from the thyroid, since thyroid controls so much in your body.
Kim

[Thelma to JanB]

To answer someone's question above, I have some twitching and aching muscles, but rarely cramping. My legs and arms ache slightly from walking upstairs,or unloading the dishwasher, or folding clothes, but the ache is nothing compared to the burning sensation on my skin.  I do not have numbness.  I am used to the twitches mostly in my left arm. The left side of my body is weaker than the right. I have cogwheeling rigidity (usually due to stroke or parkinsons) and clonus (possibly from this metabolic enzyme defect).  Stress makes everything worse, but after 7 years of living with this, I've figured out the best ways for me to reduce stress, and life doesn't seem as bad as it did then.

[E]

kim:  i was tested for thyroid and they said normal...should i requst a scan since its possible i have a goiter hiding in back of my neck causing this? and is it possible to have normal tests? thyroid runs in my family (probs)  all the doctors think im nuts..im so tired of not feeling right..i know in my heart something is wrong and when you have tons of doctors telling you there is nothing..well, you feel a bit insane...Thelma;  it oo have the symptoms of when i do laundry, etc..my arms are tired and i have no energy!  This has just gotten so incredibly time consuming..i have 3 small children and feel like this has taken over my life and im not giving them 100% cuz im so obsessed at finding out what is wrong..thank you all fo ryour inputs...i guess i know im not alone!

[kelly]

I've had these same symptoms for over 10 years. I actually remember the day it started! Felt like a bad flu coming on but then it was one in a few hours. Since then t's been really frustrating. some days I feel fine but when I get these "spells" I'm incapacitated.  terrible muscle fatigue and weakness in legs, arms, diaphram, dizziness, nausea, headache, foggy feeling. these spells can last from a afew hours to a few days. I sound like  a hypochondriac but these feeling are real. I've never been pregnant but I was diagnosed with fibromyalgia and the beginning of Sjogrens disease (autoimmune) my mom has lupus. so I figure these problems are in some way related to autoimmune disease but have never had a doctor agree!
good luck to you all!
kelly

[Dear e]

Dear e:  I certainly can relate to having symptoms, and nobody believing you.  My neurologist would say," Oh, I believe that what you are experiencing is real, to you."  It was pretty much an insult.  He claimed it was all anxiety.  It's hard not to believe you're a little nutty, when all the best doctors in your town keep telling you that they can't find anything wrong.  That's why I figured if you can't beat them, join them.  I too have 3 small children, and I too spent all my time obsessed with finding out why I suddenly felt terrible.  I still have trouble believing the diagnosis, that's why I like to visit this forum.  I wanted to see if by chance there were others out there with similar symptoms.

[E]

penny:  That is exactly how i feel..like my doctors think im a nut!  i guess i should just go on and if they cant find anything, well, i guess they cant find anything..I would rather take the diagnosis of nutty than an actual problem!  Its so nice to talk to others going through the same thing!  I just think it is so amazing we all have the same problems but with no diagnosis.That is what is killing me!  I guess i will just take a deep breath, and be thankful all my tests are coming back normal and enjoy my kiddos! t hanks for all your answers!  Its great to know im not alone!

[rose]

I don't have the time or energy to go into proper testing and all here right now, but after my own experience, talking with experts, and reading medical literature, the first I would do while keeping an eye open for other possibilities is take at least 1000 mcg B-12 and safe doses of the other B vitamins. Also, make sure you're getting vitamin E and calcium and magnesium.

Malabsorption, or deficiencies for other reasons, can cause a lot of the symptoms mentioned above. And the results of B-12 deficiency can be mistaken for MS. If severe B-12 malabsorption goes untreated long enough, it is more disabling and deadly than MS.

rose

[rose]

I don't have the time or energy to go into proper testing and all here right now, but after my own experience, talking with experts, and reading medical literature, the first I would do while keeping an eye open for other possibilities is take at least 1000 mcg B-12 and safe doses of the other B vitamins. Also, make sure you're getting vitamin E and calcium and magnesium.

Malabsorption, or deficiencies for other reasons, can cause a lot of the symptoms mentioned above. And the results of B-12 deficiency can be mistaken for MS. If severe B-12 malabsorption goes untreated long enough, it is more disabling and deadly than MS.

There's a lot of information on the peripheral neuropathy forum at braintalk.com

rose

[Mike]

I'm 19 and seem to have a lot of the symptoms everyone discusses here.  About 3 weeks ago it all started off as just dizziness.  Slowly with that came pressure on my head, mainly around the ears, then some pains in my chest (mainly on the left side nearly in the armpit), headaches, and numbness/tingling on the left side of my body.  During the day I am nonstop dizzy/lightheaded, the chest pains are nearly nothing now, but i have 4-5 spells of my left leg having the numb/tingling feeling.  And i have noticed over the last 3 days everytime I have woke up in the morning the entire left side of my body was partially numb and colder than the right side of my body.  I have had a couple CT's done, bloodwork, a spinal tap, and am awaiting my MRI results.  Every doctor i've seen tells me that i'm suffer from anxiety attacks, but its hard to believe an anxiety attack can last for 3 straight weeks.  Especially with waking up in the morning with the numbness and cold feeling.  The results from the MRI are expected to come back just fine, but if they do, i'm going to be left with only the diagnose of anxiety.  My doctor started me on Celebrex about 4 days ago.  Its so hard to believe its anxiety when i can be completely relaxed and have my mind far from my symptoms, but yet they don't go away ever.  I've missed work, lots of classes in college (i was doing excellent but now with finals in 2 weeks i will have a struggle missing the last 8 days of classes)  All I want is to have my life back, and wish I could be given a diagnose besides anxiety.

[Dear e]

Mike:  You're right, it is hard to believe that anxiety can cause so many weird symptoms.  That's why you begin to doubt your sanity, and/or the doctors.  I too, could be completely relaxed, and suddenly have an "attack".  That's why I had trouble believing the doctors.  I argued that I wasn't anxious, but that my symptoms were causing anxiety.  Twice, I woke up from a sleep with a feeling of numbness in my chest and arms.  It was very scary, and I was sure I had a serious medical condition.  
I have no other choice but to believe that anxiety must build up and then symptoms start to appear.  It's a very helpless feeling, because we all tend to think that we are in control, then our bodies let us know that we're not.  If I were you, I would make sure that all possible tests have been done:  blood work, xrays, neorological exams etc.  Then I would look at my life, and start "weeding out" undo stress, take vitamins(like the previous reply suggested), find an out for stress(like exercise, prayer, friends).  Trust the doctors, and give it over to God.  Eventually, if it is truly anxiety, it will go away!  Also, don't be afraid to take medication for anxiety.  Good Luck.

[E]

i agree again with penny...its so hard to believe its anxiety..but i guess all the negative tests are a good sign.  Its hard to understand why our bodies are going through something so major to cause such strong reactions (syptoms (symptoms)) but i hear anxiety can cause alot of symptoms that are the same as some neurological problems...so i guess that says it all!  anxiety can be very major..Like penny said, dont be afraid to take medication!  It just amazes me how many people have this problem, with no diagnosis.. take care all!

[Mike]

My problem seems to be worse at night.  For the last 4 nights I have been awaken from my sleep feeling numbness on the entire left side of my body and extremely dizzy.  I have been dizzy for the last 3 weeks, but its worse when I wake up.  Does anyone know if maybe this could be related to a tyroid problem?  Tyroid disease does run in our family, but I thought bloodwork might show that.  If all the rest of the tests comes back okay, then I have no choice to try and believe it is anxiety.

[Dear e]

Thyroid problems can cause strange symptoms.  You need to ask your doctor if you have been checked for thyroid problems.  It could have been included in your blood work, my was(which was all normal).  
I think that I have read somewhere, that anxieties tend to "come out" at night.  Kinda like in our subconscious.  ?????

[Mike]

Well, the MRI came back perfectly normal.  I have an appointment with my family doctor on Thursday, and i'm supposed to go see a neurologist sometime next week.  I'll be sure to question them about the nighttime attacks.

[Peter]

Dear all,
I too suffer from a combination of all the above symptoms, the family doctor is happy to diagnos as ME. The doctor that my company asked me to see would suggest Fibro myalgia, but a neurologist a have seen is confident of his diagnosis of a myelopathy. I have extreme fatigue, muscle pain , neck pains with reduced mobility, burning sensations in tendons, head aches,disturbed vision, creaky joins, sensitive skin, I feel to hurt from head to toe, and from deep inside to the very outside.
My neurologist is currenly treating me with an ever increasing dose of Neurontin, the current dose is 4400mg daily, increasing by 400mg fortnightly. This does seem to have some benifits, although slow to be effective.
I too think stress played a part in my illness, and am aware to reduce to a minimum.
You are not alone !!
All the best,
               Peter.

[Jeff Bassett]

I have learned something very interesting.  I have many of the same symtoms.  I have discovered mine are due to a group of antibiotics called quinolones.  I had a 4 week dose of ciprofloxin.  I have muscle twiches, fatiqiue, pins and needle feeling, numbness.

[Ronisundiagnosed]

What does the neurontin do for you.What does it help and how effective is it? Thank you

[Jacqueline]

Hello all,

I am sorry and relieved to know that there are others out there who are going through/gone through the same thing that I have been through.  During my first pregnancy I developed a pins and needles sensation in my left foot.  A year later my left side including my face suffered from constant 'pins and needles'and an ocassional feeling of heaviness/numbness.  Now seven years, 2 CT scans, 2 MRIs, neck and back x-rays and blood work later i still have permanant pins and needles in my left and right extremeties.  The symptoms come and go in my torso and face. I have also developed tinitus and ocassional balance problems (this has also been checked out to reveal nothing sinister).  

I too was told i was anxious/stressed.  I thought i was going mad or that i was going to die from some nameless disease (perhaps they'd name it after me as the first person to die from this weird syndrome) and no-one would be able to help me. However, as time went by and i didn't get any worse I relaxed.  I stopped worrying about the symtoms and find now i'm not consiously aware of them alot of the time.  I'm sorry i can't offer any advice as i have not taken any medications that have helped.  I can say that keeping fit and eating well to maintain general good health seems to help me.

Perhaps some people are more susceptable to weird stress related symptoms than others.  I see this as a positive thing, as for some people the first sign of stress is soaring blood pressure or a heart attack.

What i'm thinking is that the suggestion that these symtoms are part of an auto-immune response sounds like it could be right.

A question; is your immune system repressed during pregnancy??

Sorry this is so long.  Good luck and good health to you all. Jacqueline.

[Gloria]

This is for Mike--Before you completely blame your difficulties on anxiety, I think it would appropriate for you to have a sleep study done.  Many people with sleep apnea experience a lot of the symptoms that you have described.  
This is for everyone--It has been mentioned previously that doctors have been of little help to many of the respondents here.  As a nurse, I would like to say that there are literally thousands of possibilities to what could be causing the symptoms described on this board--things like vitamin deficiency to MS represents the range.  Physicians try to rule out the obvious first, but it remains a process of exclusion.  Unfortunately, insurance companies do not encourage physicians to spend the amount of time with patients necessary to truly rule out ALL possibilities.  As patients, we need to be proactive about our healthcare.  In addition to being prepared and concise with your questions when you visit the doctor, visit as many websites that discuss your symptoms/possible illness.  Another avenue I recommend everyone to take is getting in touch with your elected officials regarding passing the "patient bill of rights" and other legislation that will enhance healthcare and make it feasible for physicians to do the job they are trained to do.  Healthcare in America is at a crisis point and something will have to give pretty soon or there will be no physicians to care for us.  A dear physician friend of mine, by the time she pays her staff, school loans, malpractice insurance, taxes, overhead; she will clear less than the nurse practitioner in her office.  It is going to get harder and harder to attract good people to the profession if after eight-plus years of schooling/training, they make less money than someone with a GED that just started working for Dell computers.  I realize what I am suggesting does not help anyone with their problems currently, but we need to start somewhere.  Thank you and best of health to all of those that read this forum.  Happy holidays.