MS like symptons, no positive diagnosis - what next?

See your prev answer to me(Aug)"what should i do now?"...  HISTORY: Scale(1-best 10-worst)CONSTANT:dizziness(10),light headedness(10),weakness in limbs(9),fatigue(7),incoordination(9)(e.g. feel like going to fall),short term memory(6),inability to focus(7), ringing ears(9).SOMETIMES:numbness in left arm(5),tingling (pins/needles) in limbs(5). Symptoms have been increasing over time(years)-coming ang going,now mostly constant and seem to increase after being in heat (e.g. shower, etc). TESTS: MRI(normal),EMG(normal),BAER/Visual(VER)(normal),bloodwork(normal). DIAGNOSIS:Rhumatol.. ruled out Chronic fatigue, fybromalgia,Lymes,etc. Neurologist wants a Spinal Tap next. Plan to get 2nd opinion in Jan from U of Penn (no insur 'til then) NOW WHAT? What else (other than MS) could it be?The only thing not ruled out is MS, despite normal testing.  I've read, even the spinal could be normal & still be MS.  If so(normal spinal), what should i do next?  Doctors seem stumped.  Can they treat me for MS without postive diagnosis and see if I respond?  They are not giving me/doing anything to make me feel better.  No diagnosis either.  If normal spinal tap - what next? I cannot care for my 2 small children w/o assistant from family-Thank You for taking the time to help others that are going through difficult times...your words and knowledge are comforting.

[CCF-Neuro-M.D.-JT]

Unlikely treatment for MS will be initiated if everything comes back stone cold normal, unless there is a very strong clinical suspicion that you really do have MS. 10% patients with actual MS do have a normal MRI on presentation. However, this needs to be taken into clinical context, depending on the history and exam. With normal results from the extensive testing, it should be somewhat reassuring that nothing requiring emergent treatment is going on.  Hard to say what it could be as I have not personally examined you and everything has been normal thus far.  U Penn has an excellent neurology program and it would be good for someone to take a fresh look at you. In the meantime, you should try symptomatic treatment which of course isn't getting to the root fo the problem, but it should help you function until you do. Neurontin or elavil may help with the tingling. Physical therapy or exercise such as swimming may also be of help. Balanced diet with multivitamin and rest should also be part of the regimen. GOod luck.

[2kidsmom]

Doctor-
I have one additional comment/question-sorry
If this is indeed MS I feel as though this would be the more progressive stage where my symptoms are staying rather than the remitting stage....Could it be possible to be in the progressive stage without evidence of the disease-basically what I am asking is can a person become progressive in a short term (1 year)?  Sorry for taking up so much of your time. With Best Regards

[jazov]

2 kidsmom  this is identical to what I am experienceing to the T I also have had all these tests with all normal results am still also still searching I thought I was going crazy have they told you any thing that it could be? The only oter symptons that I have are ears feel like I am in the mountians and they won't open and now my head is kind of shaky at times. Well I will keep you informed on any thing I find but all your symptons and how you put them on a scale fit perfect with mine.
jazov

[Tlaw]

I have very similar symptoms however I have not had an MRI or BAER etc. I finally was able to get a Dr to beleive that I was sick and drew Coxsackie and EBV labs. They both came back positive and very high titers 3 different times now. The neurological symptoms have been getting progressivly worse, very bad coordination, brain fog, pass out and was admitted to CCU, very hypertensive intermittently. One thing they might want to rule out is Pheochromocytoma. I am waiting for the test for Pheo to come back. Then it is on to more doctors and hopefully I will find one that is knowledgable in treating and ruling out some other bad, bad things tese viruses can be or lead to. Any suggestions, Im open. This has been going on for approximently a year.

[brunobandit]

i had a friend send me an email,one of those pass it on ones.it was from a lady who had a lot of the same symptoms and test you guys are talking about.the docs didn't know what was wrong with her. her health slowly deteriorated.she tried on last thing. she gave up all produdicts with aspertaime.and with in a couple of weeks she was pretty much back to normal health.
my sister over the last yr has been to docs and been tested for things from ms to lupas.i emailed the artical to my brother in law. he gave it to her,she used to drink 4-5 diet cokes a day.with in a week of giving those up she was feeling 80% better now she feels like she is a whole different person.i don't have the artical anymore but sure i can find it if you are interested email me at  ***@**** . sorry for all this missspelled words  and grammer misstakes not my strong suit know what i mean lol

[2kidsmom]

Jazon, Tlaw and brunobandit-
Thank you for responding.  Jazov and Tlaw-I am very sorry that you too suffer from similar symptoms.  I have been to so many doctors that do not know what to do for me that I too doubted myself. Because I live everyday feeling the way that I do I know that there is something wrong. I do not know where you guys are as far as physically but everyday is a stuggle for me to even bath or walk up steps or take care of my home.  I very rarly leave home.  Since you both seem to have similar symptoms I would be interested in hearing how you cope.
Brunobandit-Thank you for your comment as well.  I am on a very strick diet....I rarly eat anything with sugar let alone aspertame.  There is alot of information out there about that subject and I am always interested in hearing the latest
Thanks

[graham]

2kidsmom, sorry to hear you are feeling very unwell. Your symptoms are so like so many of mine, although I also have some vision and hearing problems.

I too was originally told that I don't have MS (back in 98)and was diagnosed with Chronic Fatigue Syndrome, which I have never been happy with as a diagnosis for my problems.  I was recently sent for hearing tests and the doctor there is unhappy with the CFS diagnosis and is organising a further brainscan, although I had one four years ago.

I have previously mentioned, in answer to a couple of questions on this forum, that through trying to find reasons for my symptoms I learned of the problems caused by vitamin b12 deficiency.  I also have read the accounts of many people who were either misdiagnosed, or simply not diagnosed at all, untill it was found to be a vitamin b12 deficiency at a late stage.  The longer this condition goes unrecognised, the worse the symptoms get.

As I also said in the previous questions I responded to, it may not be anything to do with your symptoms and perhaps they have already checked this.  However if I were you I would want to know very smartly if this has been checked out.  If it has, ask what your level was, as there is a lot of debate about what is safe and what is not. If it is at the lower end of normal there are other tests which your doctor should want to do to ensure this is not the problem.

I hope we all get answers, but in the meantime just hang in there, there are a lot of us with you.

Best of luck
Graham

[jazov]

Hi all thanks to all for the input. I also have been seeing alot of articles on B12 defichency which I am going to pursue. This is an article I found that gives me a little hope. A 45 year old man presented with dizziness. The usual tests including audiometry, ENG and an MRI were all normal. In the course of an evaluation for gastritis it was determined that he was infected with H-pylori. B12 levels were checked and found to be low (100). His dizziness eventually resolved with injections of B12.

This was an article I found which I had this H Pylori makes me wonder. I don't use aspertame so it rules that out. I hardly cope don't get much done quit my job just can't funtion. Take lorazapam it does help with the anxiaty I pray all of us can find an answer soon but aleast I now know I am not crazy.
Hugs to all.
jazov

[mikesgirl]

Regarding your info about B12 - how low is considered low?  I just checked a test result for Mike that shows his level was at 212 back in 2000.  I have no idea if that is low enough to be a problem.  What're your thoughts?  Reference levels are 200 - about 1100, so he's clearly very close to the bottom of the normal range.  Appreciate your thoughts...  :-)

[graham]

Hi mikesgirl, what I can say is that there are people with higher levels of b12 than Mike's, who are identified as having a b12 problem and receiving treatment for it.

There are some doctors who take the view that if you do not have anaemia or enlarged blood cells (megablastic blood cells) that this cannot be the problem.  There are countless reports that show this thinking is completely wrong, in fact there is evidence to suggest that those who do not develop anaemia can, for some reason, have worse neurological symptoms than those who do.

I think that Mike should return to his doctor had have his b12 and folate checked again.  As he is in the low/normal range I would also ask they check his methylmalonic acid and serum homocysteine, which can be better indicators of true b12 deficiency.

Is he taking b12 supplement, if not don't start untill he has the tests done (it can reduce methylmalonic acid levels, which may be elevated and indicate deficiency)

I don't know about Mike's symptoms, but if they are anything like those people posting above, it has at least got to be possible.

Let us know how he gets on.

Best of luck
Graham    

[mikesgirl]

Thank you for the info.  Mike has severe dysequilibrium, shakes that sometimes become myoclonic jerks, and is nearly completely disabled by these symptoms.  He's had all the usual neurological tests (CTs MRIs, etc., etc.) and everything has been 'normal'.  I posted an extremely lengthy description of his symptoms and test results fairly recently in this forum.  There were some unusual results concerning an EcoG and ABR from the left ear a couple of years ago, so that ear is under suspicion concerning his dysequilibrium, and BAERs were conducted last week, visual and auditory.  Results are not available yet.  I will keep you posted as this information gets clarified, but in the meantime, thank you for responding and sharing that info.

[mea]

Is Mike take neurontin?  I've read a lot of your postings but not sure if I've seen that or if someone else.  If so, our experience with this drug, might help you out!!

My husband began taking neurontin at the beginning of his illness (4/01) and at the beginning the dosage was 300mg qid and after two weeks he was supposed to increase to 600mg qid.  On the 2nd-3rd day of the increased dosing, he began having the worst muscle jerks, especially in his neck but still was all over...it reminded me of tourette's (sp). It was awful.  I immediately stopped that dosage and he went back to the 300 mg qid and called his doctor.  Neuro had no problem with him remaining at the lower dosage and the horrible jerking stopped within a couple of days.  He continued taking neurontin at the lower dose until this past July when he was admitted for renal failure (another problem mostly due to medication, we think).  They reexamined all of his medicines and neurontin was removed totally.  Part of his problem has been short-term memory loss, which was severe at the onset (nothing to do with medication but with this disease, whatever it "really" is), and over the last 18 months his memory has improved.  However, I have noticed a tremendous difference in his memory and interaction since removing neurontin altogether.  We still have a long way to go...but mentally he is much improved and I know it's because of the neurontin.  It's a good drug, but it has some "mean" side effects.  I wish you the best...(I kinda know what you're going thru as a caregiver) mea

[mikesgirl]

Oh my gosh!  Don't even get me started on neurontin...  When Mike was first admitted to the hospital back in February, neurontin was one of the meds he was on.  His jerks were severe enough to almost throw him out of bed, and although the neurontin *did* stop it, it stopped darn near everything else, too.  At this point, I'm convinced that half his disability is due to the fact that he was so heavily drugged for so long, he just couldn't recover as quickly as he would have on his own.  Some of the effects that caused us to discontinue neurontin were: double-vision, severe orthostatic hypotension, constantly low blood pressure, more severe vertigo, hypersomnolence, and probably other things that Mike couldn't even articulate.  As I recall, it seems that was when he was very disoriented, as well.  One of the biggest problems with so many drugs, as I remember, was figuring out which ones were causing which effects, and then deciphering which symptoms were actually the illness.  It still infuriates me that many of the side-effects were considered by doctors to be part of the illness itself, when, in fact, they were not.  Even at this point, I don't know what is drug-related.  He is only taking trileptal, and that seems to be okay, but we really don't know that.  Recently, Depakote was tried, and his shaking became worse.  Had I not been fully aware of the likelihood of the Depakote was causing it, I would have been fooled and assumed Mike was just having a downturn and been very discouraged.  We are rapidly becoming almost totally anti-drug as a result of all of this.  Mike would just as soon give up all the drugs and just live with his problem at this point, rather than give yet another drug an opportunity to mess him up further.  When there's no clear diagnosis, it just makes no sense whatsoever to pump this stuff into your system, or so we're beginning to feel.  More drugs just confuse the issue, in our experience, and make diagnosis even more difficult for the doctors.  <climbing down off my irate soapbox now...>  If it turns out that a vestibular problem is the primary issue here, then he has lost eight months of potential rehabilitation, which is crucial in vestibular problems.

[Alohawen]

I'm sorry to hear that so many people are suffering with such debilitating symptoms without diagnosis.  I share similar symptomatology including needle-like sensations and tingling in my hands, legs and feet, decreased memory capabilities, twitching muscles, among other symptoms.  My MRI test revealed two spots that could be MS lesions although I do not have a definitive diagnosis.  A somatosensory evoked potential test revealed a delayed response from the left tibial region.  I suffered with progressively worsening symptoms for two and one half years. The good news is that my symptoms are 90% better. The symptoms nearly disappeared after I had a miscarriage and then began taking 1300 mg of oil of evening primrose twice daily, folic acid supplements, a daily vitamin and cod liver oil. I believe the improvement is hormone related.  Please check with your doctor,however, before contemplating alternative medicines as I am sure there are side effects.  I just decided that for me it was worth the risk. However, I have now been told that I have a 2 cm long fibroid (which could be resultant from the evening primrose altering the hormonal levels), so I have cut my intake to 1300mg daily.  My doctor recommended I obtain a lumbar puncture, but I am nervous about the procedure and possible errors. If anyone has been through it, I would appreciate your input. Thanks.
Wendy

[sharon123]

I've had a lumbar puncture and even though it wasn't pleasant, it was worth finding out the results. NO MS! I've worried for a year about MS and my MRI was negative but I still had MS-like symptoms and the neuro dr. that did my spinal tap said it would show with 98% certainty whether I had MS or not. With a clean MRI and a negative spinal tap I've been able to let go of that worry and even though I don't have a diagnosis, it's at least not that. The spinal tap itself is not really painful, it's the headache afterwards. Good luck to you.

[2kidsmom]

Thank you everyone for all of your input.  My hope is that we ALL find answers for each one of our needs.  We all know our own bodies and we all must pursuit answers. This is an incrediable forum that not only provides answers and guidance from the doctor but also from people who are going through almost the very same thing and that in it self is comforting.God Bless.

[Alohawen]

Thanks Sharon for sharing your personal experience regarding the lumbar puncture. I am glad to hear that you do not have MS and hope you start feeling better soon. Wendy

[Jenny22]

Hi,

I read this, and it brought back so many memories for me, my mother has MS and has had it for 8 years. When she was first diagnosed, the doctors couldn't tell what it was,  she had so many of the same symptoms. Several things that she has been doing to control the symptoms have been working better than any medication could ever have.  Firstly it seems to be exaserbated by stress.  She became so stressed and anxious about the symptoms that it made it so much worse.  Also she changed her diet, which also helps with stress levels.  She eats mostly organic foods, ie milk without hormones, organic eggs etc.  Lots of fresh vegetables and fruits.  She has also found that a magnesium supplement relieved a lot of the associated symptoms, like fatigue and headaches.  Ms is probably one of the hardest diseases to diagnose because they don't really know why you get it.  I have watched her disease for over eight years, she went from being un able to walk to walking on a regular basis.  
I am not a doctor nor do i have this disease but, I can say that I know what the effects are and I know that a positive enviroment and a diet change might really help you. But mostly remember to take care of your self.  It must be difficult and scary to think that you are getting sick with small children to take care of. I truely hope that you all have supportive family and friends, remember you are not alone and take care of yourself mind and body...the two in combination are what make us whole.  Best of Luck and I will keep you all in my prayers.

[Paige1]

Hi...been reading this thread and just thought I'd mention something that I have been using for my MS. I do have a definite MS diagnosis and have recently stumbled upon something that I am hoping is the answer to staving off any new symptoms. Go to this website to read about it. www.lowdosenaltrexone.org It is a drug that is approved by the FDA over 20 years ago. That is why it will probably never be clinically tested for ms. Drug companies are not willing to throw millions at a drug where there is no potential for a patent. Being that this drug has been in use for over 20 years, there is no hope for a patent. I think these type of drugs are referred to as "orphan drugs"? It has been in use at a 90 mg doseage for such things as alcohol addiction and now aids. Click onto the link to MS. A Dr. Bihari has been experimenting with it at a much lower doseage of 3 to 4.5 mg for MS with great success. I don't know exactly the mechanisms that are going on but it is supposed to halt any MS symptoms and at that low dose is completely harmless. I am having a go at it since June of this year. The thing that strikes me is that if you are on nothing else (beta serons..etc) what is the harm to take something that could conceivably halt the MS. You have nothing to lose. There are about 2000 people using this drug .....please read about it. Oh and there is another website...www.goodshape.net where people discuss the use of LDN and histamine on the bulletin board. Histamine is supposed to help with fatigue. Godspeed to a cure........

[mydragonfly]

THIS WILL HELP EVERYONE! Change your diets now! Go to MS Diet websites. You may have many reasons for your discomfort. Heavy metals, parasites (for sure) food allergies!!! Wheat, sugar, dairy,spices,cokes,EAT FRESH FOOD, Juice Veggies, drink 2 or 3 quarts of water. Change your lifestyles your attitudes and pray for guidance, connect back to what created you. Last get colonics and do coffee enemas clean out your system, I did and symptoms are gone, it takes about 6 -8 months but it works. Parasites and heavy metal poisioning is for real! Good Luck!!!!!!!Diagnosis MS

[nikibug]

Sorry to hear about these symptoms. Ihave similar ones. I was dianoesd with a chiari malformation(ACM) a couple of years ago, and it was thought at first to be MS. I had 2 MRIs but it was missed on both. It wasn~t until my third that they caught it. Just something to think about.     Nikibug

[2kidsmom]

mydragonfly...what did you discover that lead you to believe that it may have been a parasite...this is interesting because I was just doing a ton of research on yesterday...thank for the input...2kidsmom

[encourager]

i suffered for 4 years with all the syptoms (symptoms) that mimmic so maany different conditions, had all the test done repeatedly only to be told by some docs "its all in your head ,here take this anti depressant" they are so quick to perscribe them.but my pain and brain failure was spirling faster  and fassster i even had one doc tell me he wanted to do brain stem surgery, unbelievabel!!
it was determined lymes disease, and chronic fatigue sydrome after treatment , i still had all the same symptons.
i also had 4 different parasites found in a blood teat that was overlooked as well as h-pilori after tretment for that and many many prayers later i actually woke up , got out of bed without pain, foggieness, and lethargy,that was 4weeks ago and every day i get better and better , happier and happier
i believe with all my heart and soul it was GOD , i gave myself whole heartly to Him i pprayed continuesly , i read the bible , i stopped dwelling on all the negatives and started reading alot of inspiratioal books to help me along a righteous path
AND THATS HOW I GOT HEALED , PRAISE GOD
NO MORE SMOKING, NO MORE ALCAHOL (alcohol), AND VERY MIN. STRESS ;  NO MORE 10 DIFFERENT MEDS , ONLY WELLBUTRIN NOW WHICH HELPED ME QUIT SMOKING
IF I CAN HELP IN ANY WAY , LET ME KNOW, I'LL B PRAYING FOR YA ALL

[toro]

did you ever find out what the twinkling stars/vision problems were?
the reason i ask is because i ve been having the sme type vioson problems similar to that, for the past year and a half, and have yet to find out any solution.
along with many other symtoms (symptoms) (dizziness,headaches,numbness of arms while sleeping,ect.)
ive been to m.d,optometrists,ophthalmologists,neuro-ophthalmologists,neurologists ,e.r's and have had blood tests, c/t scans,mri of the head,thyroid tests,all normal. and still everybody seems to be dumbfounded about what it could be.
our next avenue is to do the lumbar puncture .
anyway 2kidsmom i saw the posting you did a while back and you had described the same type of vision problem im having and was wondering if you had found out what it is.
        thanks
                toro

[2kidsmom]

Toro,
Hi....to answer your question I never did find out what these twinkling things are.  I have had just about every test (neurological).  With all of my other problems for some reason that just doesn't sit high at the top of the list.  I too am supposed to schedule a lumbar puncture...I will probably schedule before the holidays....I hope you find yourself in good health as for so many of us are too young to be this sick.
With Best Regards

[2kidsmom]

see above comment...sorry

[chiliperson]

I have a friend with who has had many of the same symptoms without diagnosis - she finally was diagnosed with central nervous system vasculitis - a very rare condition and many doctors are not familiar with diagnosing or treating it - she is doing much better now - you can check out by just entering Central Nervous System Vasculitis on the internet to see a website - symptoms, treatment etc.

[Honeybear's mom]

Hi everyone!  Since many of you have been experiencing symptoms that may be associated with MS, I thought I'd ask your opinions.  I'm 28, and have had strange neuro symptoms for over 2 years.  Mostly just a pulsing, buzzing-like, current-like sensation just under the skin, not really tingling or numbness (hard to explain!)  They come in waves and last for several hours, then go away, then come back off and on for several days.  They're in one area for several weeks, then I'll feel it in a different area (e.g. left shin, right tip of index finger; very specific areas).  I also tend to feel intermittent tiredness in one leg or the other.  It has never kept me from exercising - in fact, I don't really notice it when I'm exercising.  I've had 3 MRI's of the brain (normal), an EMG (normal), BAER (normal), VER (normal), bloodwork (normal), normal neuro exam, and a slowed somatosensory evoked potential (they chalked it up to minor scoliosis).  I've had 3 neurologists tell me it's not likely to be MS, but what else could it be?  I've looked into Vit. B deficiency, but take tons of B-complex vitamins.  I've had neurologists tell me to not worry about getting a spinal tap, because they don't see a reason for it.  I don't want to be paranoid, but it's really freaking me out!  And it's just gone on for so long, that I'd really like some opinions on what to do next (if anything).  I'll try to post a general question to the forum this week.  Thanks for any advice/comments you have!
HM

[mom in law]

All,

please look into "Olivio Ponto Cerebellum".  My son-in-law was recently diagnosed with this.  Had all the symptoms of MS - early diagnosis was a gluten allergy, tried the diet for months with no change.  Finally found a doctor that diagnosed him with the above.  

There is a website .. couldn't hurt to mention it to your doctor and check out the website.  Good luck to all of you.

[Lady Jay]

Hello Everyone...

I've heard many things here from A to Z... and only a smidgen of actual dx's.  Have any of you ever heard of "autoimmune disorder"?  Did any of you ever take a flu shot before your symptoms began?  Ever heard of CIDP?  That's Chronic Inflammatory Demyelinating Polyneuropathy.  It seems like there are so many neurological illnesses out there...

Perhaps the answer lies in "genetics"?  Perhaps your family is predisposed concerning certain autoimmune disorders?  Familial history is real important, so check it out.

Take care All.

[t_anunson]

Hi all,

I`ve posted on here before, and do often because my symptoms seem to change. 2 weeks after the birth of my daughter, I started having tingling / burning in hands and feet, abnormal sensations and cramping in right wrist, tendons would tense up when I bent down and my muscles twitched. Well most of this has went away except I`m still slightly twitching and the tendons in my left heel still tense up when I bend down, and I still get a slight tingling in that ankle. But I`ve also seemed to have developed a new symptom... My left knee seems to "pop forward" when I`m walking sometimes, and my left leg feels tired continuously, even after rest.Could this be considered weakness? I`ve had a brain MRI- Normal, bloodtest - Normal, strength test- Normal, and a nerve conduction test. The doctor said my nerves were conductin slightly slow, but it was normal. I really didn`t understand that though. Has anyone with MS had any of these symptoms, or anyone who`s just had a baby? I`m frustrated!

[2kidsmom]

hi,  I am the one who originally posted the question here.  See above for all of my symptoms.  Like you alot but not all of my symptoms began after the birth of my second son.  I agree it is extreamly frustrating in that we go through all of the testing and still no answers...my son is 18 mos and in that no real answers....everything comes back NORMAL!  My weakness is all over bodily weakness(fatigue) but my legs are the real concern of the weakness.  I do not have feelings of popping in my legs, but just the fact that I will fall when walking.  Since I have not been diagnosed with anything as of yet I can't really help you with the  question of ms but I have read alot of ms patients have where their legs will suddenly go out from under them.  I hope you and all here find answers soon and peace in the season. 2kidsmom

[zoltanvarga]

I notice most of you have had MRI of the brain,perhaps the docs should at least consider spine MRI as ms can manifest there sometimes before the brain. Just an idea and also an experience of a good friend of mine!

[t_anunson]

Hi,

I was wondering when your symptoms started? Did you have them before the birth of your first child? My pregnancy seemed to have triggered mine. I have a few of your symptoms, but a lot I don`t. I doubt you have MS. Try not to worry. My neuro doctor says MS almost always shows up on an MRI, even though theres that 10% that doesn`t, it usually does. I hope you get well soon. Good luck to all...

[Annika]

Dear 2kidsmom,

I want to add my support to what Nikibug mentioned about a Chiari.  All of the symptoms you describe could be consistent with this, although of course that doesn't by any means mean that you have it.  The diagnostic categories for a Chiari are shifting, so it's not necessarily an abnormality that will jump out at the radiologist in all cases.  Many patients who have ended up with this diagnosis had had their MRI's initially read as normal.

I also agree that when mysterious neurological symptoms continue, one must look at the spinal cord as well as the brain.  In addition to MS, there are some potentially serious disorders affecting the spinal cord that are frequently misdiagnosed as MS:

1.  Arnold-Chiari Malformation
2.  Syringomyelia/syrinx of the spinal cord
3.  Arachnoiditis (can be caused by misplaced epidurals during childbirth, spinal anesthesia, blood patches, multiple LP's if blood vessels are nicked, spinal trauma, spinal surgery).  This is generally described as a pain syndrome, but in some people (like me) the neurological symptoms are more prominent than the pain.
4.  Spinal cord tumors (rare, but they do happen).

All of these disorders can cause numbness, weakness, frequent muscle twitches/fasciculations in many areas of the body, persistent muscle stiffness and tendon tightness, burning pain.  The tend to progress slowly over time, unlike other "normal" causes of these symptoms that may resolve on their own.  Some of these disorders (like Chiari) are more likely to affect the nerves up at the brainstem, which control functions of the head, face, and neck.  Some are more likely to be associated with bowel/bladder/sexual problems.  There are many other symptoms that also are associated with each one, but they all present in a range of severity, often with mild symptoms in the beginning.

I don't mean to alarm people, the vast majority of whom have much more benign explanations for their symptoms.  I'm just coming from the other perspective, as someone who did end up having a very serious cause of  my symptoms (a spinal tumor, and subsequently arachnoiditis).  All the disorders listed above are rare, but it has been disturbing to see how easily they're also missed when they do turn up.  Even when doctors do MRI's, they may not image the right area, and some of these disorders have to be specifically looked for by someone with experience in the wide range of MRI appearances (especially with Chiari and arachnoiditis).

Sincerely,
Annika

[t_anunson]

Do you have arachnoiditis? If not whats your diagnosis? Did you have an epidural?

[Annika]

Dear TabA,

I have arachnoid adhesions, commonly referred to as "arachnoiditis".  It's kind of a misnomer, since the "itis" seems to imply some sort of ongoing inflammation within the spine (in the arachnoid layer).  All I have is the adhesive scarring which results from that inflammation.  The source of that original inflammation, and the eventual scarring, was surgery to remove a cauda equina tumor when I was 29 (I'm 32 now).  

So my arachnoid adhesions are not the result of an epidural.  However, arachnoiditis is a known possible complication of epidurals, and is thought to occur sometimes if the epidural needle accidentally punctures the dura to allow blood and/or other substances to enter the CSF space inside the spinal canal.  Blood inside the intradural space is the main common trigger for arachnoiditis/arachnoid adhesions.  That's why blood patches for CSF leaks can cause this problem, as can spinal anesthesia, spinal trauma, lumbar punctures (again, if they cause bleeding into the CSF), and, most especially, spinal surgery.  I have to say that this is still felt to be a rare complication of epidurals/spinals/LP's, and most people have these procedures without any problems.

This has been described in medical papers, in medical textbooks, and many versions of the same basic story tend to get told by patients who end up diagnosed with arachnoiditis.  There are some of those stories on this board as well, if you go to the archives.  However, a big caution - these tend to be severe cases of arachnoiditis.  Mine is pretty bad, not because I have a lot of scar tissue (I don't - you can barely see it on MRI, even though it was confirmed on reoperation to try to correct my problem), but because it is tethering my spinal cord.

Most of the information on arachnoiditis will talk about the severe cases.  However, there's a huge spectrum.  The basic abnormality is just that there are spots of scar tissue inside the spinal canal that are tugging on the nerves and/or cord.  The reason we know there's a spectrum of symptoms is that many of us have a gradual onset of problems, so you can see how the early, subtle symptoms evolve into something that becomes easier to diagnose with time.  There may be people out there, though, with minimal scarring, who never progress beyond these early, puzzling symptoms.  

Scarring inside the spinal canal can cause a variety of symptoms, and one need not have all of them.  These symptoms include:  burning pain, squeezing pain, shooting pain, aching pain.  There may or may not be frequent muscle twitches (fasciculations), weakness, persistent muscle stiffness and tendon tightness (due to the pulling on the cord itself).  There may not be muscle symptoms at all - it took a year of other symptoms before I had any problems with my muscles.  There may or may not be bowel/bladder/sexual problems of varying degrees of severity.  Usually the lower body is affected most, but there may be upper body symptoms too - depending on where the scarring is, and whether it's pulling on the entire spinal cord (that's the case with me).

One key feature of arachnoiditis pain is that it tends to be very positional.        Of course, that's true of many other disorders as well - but not so much the systemic diseases that affect nerve function in non-mechanical ways, like B12 deficiency or MS.

Arachnoiditis is diagnosed by history, and by MRI - but MRI is not foolproof, as not all scar tissue will show up in such a way that you can clearly identify it.  In general, the radiologist needs to be told to look for this abnormality.  He will look for evidence of nerve clumping and/or inflammation/scarrgin surrounding the nerve roots.

I don't want you to be unnecessarily scared, although I'm afraid that's exactly what I've just managed to do.  So let me just say that someone with mild arachnoid adhesions can do a lot by gentle physical therapy and stretching.  In genneral, activity is good, to keep things loose - but being careful not to put a lot of stress on the spine, or to do exercises thhat involve a lot of sudden movement of the spine.

If a person has arachnoid adhesions and doesn't know this is the source of her problem, she might undergo all sorts of invasive procedures that are only likely to make the scarring worse, and she might miss out on the benefits of physical therapy.  So that's why I think it's important for people to be aware of this diagnosis.  In addition to frequently being misdiagnosed as MS, another common misdiagnosis for patients with arachnoiditis is myofascial pain syndrome or fibromyalgia.  But of course, people should also exhaust all the other possible explanations for their symptoms as well.

Again, I don't mean to imply this is what I think is going on with you.  I know just how this all sounds, and I feel very bad about it.  The only way to explain this problem is to explain what's known about the worse cases.  I don't mean this to scare people who may have other explanations for their symptoms, or who may have very mild symptoms from arachnoid adhesions.

Sincerely,
Annika

[Annika]

Hello,

This is just an addendum to what I wrote before.  I don't mean to imply that arachnoiditis and epidural complications are the only causes for  neurological symptoms that seem to come on during the period following childbirth.  I just meant to explain this one condition (which I have myself, and so know more about than other disorders).  Childbirth itself, and carrying a heavy infant, can cause mechanical strain to the spine.  Some women may have an underlying disk problem or other spinal abnormality, that suddenly gets worse during the period after childbirth.  So that's worth looking for too.  If most of the symptoms are in the upper body, one might think about some sort of nerve compression around the cervical spine.

Sincerely,
Annika

[t_anunson]

Hi Annika,

Thanks for your comments. I don`t really think I have arachnoiditis, or even MS, I hope not at least, and I`m sorry to hear that you do have arachnoiditis. I hope you get completely well soon. I have an appointment with the neuro doctor tommorrow. He`s gonna be checking my neck MRI to see if I have a bulging neck disk. This will just be another test to help rule stuff out. Because my symptoms seem to come on and then dissapear...this thing seems to be more benign than anything. I really don`t think it was the epidural related though, because I didn`t get a headache or taste metallic in my mouth. I think it just slowed my labor and caused me to throw up during labor. Thanks so much, I`ll update ya on me....

[Korie]

I have been reading your comments....Approximately 2 years ago I had the onset of problems that most all of you have discussed.  It started out that I was told I had a TIA.  Approx 8 mos after the initial episode another happened.  I was living daily in these episodes.  My face was numb, I was tired, my hand and legs were numb.  I felt like I had creepy crawly in my head, my speech was terrible, after episodes or even during I would start to stutter, or I would transpose words.  I felt like a complete idiot.  I went thru a few neurologist.  I was tested like most of you for everything under the sun, Vasculitis, I had a brain angiogram.  I had the spinal tap for the MS, all of my tests blood, ekg's, cat scans MRI, Rheum tests, I even saw a Hematologist all tests were normal.  A couple of times my ANA came back elevated. They looked into Lupus.  Still results came back normal.

Thru lack of anything else I was given the diagnosis Acephalgic Migraine.  (Aura of Migraine).  I DONT GET HEADACHES....I JUST GO NUMB LIKE I AM STROKING OUT.... I have had, on occasions those flash spots, which my neurologist says is Migrainal related.  However, I only get those spots occasionally.  Never during an episode nor after.  My hearing would go.  I can tell when an episode is coming if my hearing starts to go wacky.  I not only get ringing.  But I feel like someone is plugging up one ear and I can't hear out of it.....

I was given Depakote (500mg a day) and Verapamil (blood pressure med, even though mine was not high)  The combo of the drugs have worked for me.  Although I have had breakthru with the numbness and tingling and a few times I felt like I was paralyzed just on the right side of my body.  The doctor is ready to remove medicine.  I am losing hair in the drodes....1/2 my hair is allready gone.  I fear that taking me off this med, which is an antiseizure/migraine pill.  Will spiral me back in to the daily  hell I lived in over ayear ago.....Why do I write this..I don't believe AURA OF MIGRAINE....I hardly believe that what I have is migraine I read all of your comments and realize I still am in the same boat.  I only had medicine to work for a while, now I am scared to death about living without medication that works, Then I am afraid of being on medication to long.  What if dementia happens earlier to me because of my "brain" problems, what if I am being misdiagnosed.  But I really don't want to go back thru the hospital and test hell.  I literally spent 3 months in and out of hospitals.  TERRIFIED.  I am 32 now a mother of 2 and I was 30 when this first started....Is the brain to hard to get correct diagnosis,  I follow up with my nuero in Jan.  I am considering going to MAYO for another opinion.  And when I read all of these medical terms I have never heard of makes me want to make sure that all of those tests originally run, had some of these diagnosis in mind.??????????

[Annika]

Dear Korie,

How very frustrating.  My own feeling as a patient (who has very different issues from your particular ones) is that complicated neurologic disorders may need many different expert brains to figure out what's going on.  Don't be afraid of going for second, third opinions, as long as you have some central doctor who can follow the information as it comes back.  If Mayo seems the natural place to go, that might be one option.  The main danger with doctor shopping is if the information doesn't somehow get collected by one person who knows you well and can help make sense of this for you.  Other than that, I think getting consulting opinions can be very useful.  

In addition to what's already been considered, have they thought about intermittent hydrocephalus?  That can sometimes be associated with transient sensory and cognitive problems.  I'm not saying this is a perfect fit for your symptoms, but perhaps another thing to think about.  There are some other people on the board who have had this.

Sincerely,
Annika

[Annika]

Dear Korie,

I re-read the details of your story, as well as your other post.  While it's impossible to really get a sense of what's happening on-line, there are many parts of your symptoms that are the same as those that might happen if there were problems affecting the brainstem and cerebellum.  These two structures are the ones that are primarily affected in a Chiari malformation.  As I mentioned to 2kidsmom above, and which nikibug has also discussed, a Chiari can be tricky to diagnose.  The MRI's really need to be reiviewed by someone who has experience with the newer classifications of Chiari anomalies.  A Chiari can also cause intermittent hydrocephalus.  

The people who tend to understand Chiaris are often neurosurgeons, because they see these patients the most. However, different surgeons' experience levels may vary widely.  To really rule out this diagnosis in a patient who has symptoms that might be suggestive of a Chiari (and I wouldn't know if yours are - so many things become ambiguous when described in e-mail), it may be necessary to meet with a neurosurgeon who specializes in Chiari anomalies.  I know that at Johns Hopkins, their neurosurgery department has been involved in some of the recent research on these disorders.  For someone who is seeking evaluation, one might check out the web-pages of different neurosurgical centers, and see who lists this as a specific area of interest.  You can start by raising this issue with the neurologist you are already seeing.

One key feature of a Chiari is that the symptoms are often affected by triggers that raise the pressure inside the head (like straining, vomiting), and by the positions of the head or neck (bending the head/neck forward, in particular, tends to bring on symptoms).  But it can be somewhat fuzzy.  Patients often have headache, especially at the base of the skull/nape of the neck, neck pain, choking sensations, trouble/changes with breathing, changes with hearing, feeling of pressure behind the ears, incoordination, feeling of pressure behind the eyes, blurred vision, ringing in the ears, pain/numbness/weakness down the neck/arms, facial pain/numbness, changes in the voice (hoarseness or clumsiness when speaking), difficulty/straining when swallowing, chronic fatigue, plus all the symptoms of intermittent hydrocephalus that can happen along with this syndrome.  There are other symptoms which I am likely forgetting, because there are many ways this syndrome can present.  Patients do not always have all the symptoms, and symptoms may range from mild to severe.  

The basic abnormality in a Chiari is that the brainstem/cerebellum is located too far down into the opening in the skull where the spinal cord leaves the brain.  This can cause changes in CSF flow through this area, or direct pressure on the brainstem/cerebellum.  All the symptoms follow from these basic problems.

So Korie, the main reason why I am writing this up for you is so you can get a sense whether this in any way relates to your problems, or if it's totally out in left field (it might be).  I'm speaking only as another patient and don't mean to try to diagnose you.  I just understand that you've been struggling for some time with symptoms that aren't exactly no big deal.  If I were in your place, I know I would be looking for information.  I know there are many other things that might be going on.

Good luck,
Annika

[t_anunson]

Hi, I`ve been having a buzzing sensation shoot down my right leg when I bend my head down. I had a brain MRI- normal. Have had peripheral neuropathy symptoms on and off 4 months after daughter`s birth. Also spasticity in limbs. I`m scared I could have MS. Going to doctor tommorrow for neck MRI results... I`ve also had a popping/ cracking sensation in my neck 2 yrs. I`m wondering if this buzzing sensation could be a lhermittes sign.. any advice from anyone?

[Annika]

Dear TabA,

A popping/cracking sensation is usually caused by bone against bone, or sometimes by tendon/ligament against bone.  It's very nonspecific, meaning it doesn't tell you much about the exact cause, but it does tell you that when the joints of your cervical spine are moving during daily life, something is not gliding as easily as it should.  Depending on where the cracking/popping is, it could be other parts of the musculoskeletal system of the neck too, but since the spine makes up almost all the joints in the neck, this is usually where the problem is.

This could be totally incidental to the other things that are going.  It also could be related.  The most common cause of bone cracking/crunching is probably minor orthopedic abnormalities in the cervical spine - such as the changes of osteoarthritis, bone spurs, imbalanced ligaments (that aren't holding the cervical spine aligned the way it should be).  Most of them are no big deal.  Calcifications in the soft tissues around the neck (from old trauma, say) can also do this.  

One of the rarer causes of this problem is what I have: weakness of the neck muscles themselves (due to nerve damage), causing the whole structure to lose it's natural strong support during movement.  I have a lot of crunching and snapping in the neck, and it happened very suddenly (at the same time that the nerve damage to the neck happened).  But I have to stress that this is such a rare cause - almost always, the kind of popping/snapping you describe is due to wear-and-tear related changes in the bones and/or ligaments.

Your symptoms do make me wonder again about the possibility that a cervical disk prolapse is causing some of the numbness/tingling you describe.  It would seem weird to me that you would have more symptoms in your legs than in the upper body, if a disk in this area were at fault.  But I've given up trying to predict the nervous system, and it's very hard to tell what the full picture is by e-mail anyway.  There are things in the cervical spine that can show up with leg symptoms before the real arm symptoms begin.  A cervical MRI seems reasonable, at least as reasonable as the brain MRi (which they've already done).

Good luck,
Annika

[t_anunson]

Hi Annika,

Thanks so much for answering me so quick. I was wondering? How do u know so much about this stuff? U a nurse, doctor? Just curious... I`m just a civilian, and I`ve learned a lot on this stuff too from just researching. thanks...

[Korie]

Thank you for your response.  It seems so wierd that most of the diseases that are associated in the brain are so hard to diagnose and that it can take years before an exact anwer is given.

I hate feeling the way I do...I have taken notes from your comments as well as reading other peoples issues.  I did look up the names that you listed previously, however, some symptoms sound like me and others don't.  I just hate feeling so strange sometimes and I have yet to see anyone out there who has listed. Acephalgic Migraine.  Or been given any sort of migraine diagnosis.

I am definately considering the 3rd opinion for follow up to all of this medical stuff.  However, when I asked my current neuro for a follow up MRI, seeing that I have not had one in almost 1 1/2 years, he stated he did not see the necessity for it.  No major changes in any symptom....I felt that kinda of odd, since I am still suffering breakthru the meds and have yet to live the life I once used to....Any way I am not the Doc..But I definately am going to bring up some of what I have read to him and see if there is yet anything more I can do.

Thanks again for responding and I hope that your medical condition is getting better and under control as well.

[marisa]

I have been experiencing a rather strange symptom for over a year. I feel as though I am walking on a 'floating dock' for lack of a better description. This is accompanied by random dizziness, fatigue and a sensation of heaviness in my feet. Has anyone else had the 'floating ' sensation when they walk? I have had an MRI, CT, and also seen a neurologist. Every test was normal. Something has to be causing these symptoms. Thanks for sharing and caring.

[lyndsay]

This page has really scared me. just came across it while looking. I too have been back and forward to the doctors in the past 8 weeks to no success except being told im suffering from anxiety and handed anti depressants!! i have saw 5 different doctors who do not know whats wrong with me. blood tests all normal and have been sent for a thyroid test which the doc told me will probably be normal since my blood tests were! i was fit and well until 8 weeks ago when i got a funny feeling in my head. it got steadily worse, muscles in my head contracting leaving a dull head ache, very slight coldness in my face like toothpaste had been rubbed over it, occassional dizziness, feeling faint,very slight weakness in my left arm, although that only happened once and just general tiredness accompanied with fatigue, which is also on random days. im only 23 and feel like im losing my mind!!! i also get agaitated feelings within my head and in my stomach sometimes which i know i dont provoke as i have no worries in my life. i cant take no more of this and just want to be normal again, it all came on all of a sudden and feel like a hypocondriac when i go to the docs, although they are going to investigate further if my thyroid is ok (which it will be). its all very strange and im beginning to wonder if i have MS. just wondering why me? i got a little girl of four and i need to be there for her. im only 23!!! any feedback would be welcome. thanks for listening

[t_anunson]

Hi lyndsay. I`ve wondered whether or not I have MS too. But now I`m beginning to think I don`t. I had neurological problems 6 months ago after my daughter was born. I`m feeling some better now too. Some of the problems have diminished and it turns out I had high blood pressure after having her. It was contributing to a lot of the twitching and numbness I was having. I`m on BP medicine and feeling some better now. Hang in there, you`re probably fine. Have you had a brain MRI yet?

[Trinardskinard]

hello.i was reviewing a few things and was wondering if anyone in her has Chiaris Malformation. I am 21 years old and have Chiari's Malformation. Its funny I was fine until I got into a car accident and then I had to have surgery anyone relate

[Trinardskinard]

hello.i was reviewing a few things and was wondering if anyone in her has Chiaris Malformation. I am 21 years old and have Chiari's Malformation. Its funny I was fine until I got into a car accident and then I had to have surgery anyone relate

[Damien0410]

A related discussion, Possible MS was started.

[Dani1013]

A related discussion, mimics MS was started.