Nobody answered me ...

[epatt]

A couple days ago I made a post that received two nice replies, but there are several others who have nigh unto ten responses each.  I'd be most appreciative if there could be substantive responses to my post.  It is copy and pasted below.  Thank you.

===
In 1992 at the age of 20 I began having severe fatigue, balance problems, and walking difficulty.  There were also some occasional tremors in my hands.  Thorough medical examinations were inconclusive and a brief discussion about Parkinson's ended up into a 'likely' diagnosis of MS as the cause of my problems.  Since that time my symptoms have worsened, but strangely my spinal MRIs have never showed any lesions.  I'm always tired, my balance is lousy, I have tremors in my hands (some days worse than others), I now require glasses, was diagnosed with Epilepsy, have strange hyper-reflexes in my arms, occasional swallowing problems (sometimes including choking on my own saliva) and now have to use a power wheelchair to comfortably get around without being so exhausted that life is impossible.  My clinic replaces doctors every couple years, and this happened a few months back.  With the result of the MRI he questions whether I have MS at all and has not-so-subtly suggested that I may be making this all up which has only served to upset me.  What other possible neurological problems would cause tremors, weakness, fatigue, and walking difficulty?  I am a 35yo male.  I realize you can't be definitive with such limited info, but please give me some leads, some ideas, some references, and/or places I can turn to.  If I don't have MS then I need to know what on earth has caused this for the past 15 years of my young life.

[JonM]

Oops, my bad...

[Quixotic1]

Please Note:  This was a post from epatt from last October.  There is no evidence that he has posted anything in MedHelp since then.  Someone came upon his post apparently by accident and responded, but this is not an active thread.

Hi! Jon!

Quix

[JonM]

The key piece of evidence for MS is the Brain MRI.  Find out if radiologists ever suggested/noted lesions or foci suggesting a demylenating disease.

Spinal lesions are hard to find/see on MRI.  Not seeing them does not rule out MS at all.  Again the Brain MRI is much more useful and definitve.

JonM

[grannyhotwheels]

Hahahaheeheehee,  As you can see I don't pay attention to the dates.  But not making excuses I do talk to myself all the time.  I find it very entertaining, I make myself laugh all the time.  I have found that when I'm by myself I can be quite hilarious. haha

I'll be praying (I need to pray for my sanity),
Carol

PS. by the way why was the reposted any way?

[Quixotic1]

We'll blame it on the MS, but you all are talking to a poster form last October.  I don't think he's around any more.

I suppose it's better than talking to yoursekf...

Quix  :))  that's me with a double chin

[grannyhotwheels]

As fast as this forum moves sometimes you should feel fortunate to have had those 2 replies.  That's usually the norm around here.  The ones with lots of replies, well it's probably something that the people replying actually know something about the topic.  Yours was a little tough and although I could have and should have replied to give you some moral support I couldn't have replied with any knowledge of you subject.

You see what I mean?  Speaking for myself I will try to be a little more attentive but I'll warn you right now that there are a lot of day I only lurk, I just don't feel like talking.  I'm sure there are several others on here that feel the same way.  Probably even you.

I try to look for post that have none, 1 or 2, replies so I can help out but if it's something that I don't feel like I can help with I admit I move on.  I'm going to try to quit doing that because I guess moral support is better than none.

I'll be praying,
Carol

[zmombomb]

Back in 1999, I started having pain in my jaw, hypersalivation, then dry mouth to the point that I couldn't eat popcorn, my favorite snack, was choking on my saliva during my waking hours, never during sleep, was having many forgetful moments, after years of having the best memory anyone could ask for.  I also was having moments where I couldn't remember what I was doing.  I would stare and wonder why I got to this part of the house, office, etc.  I would be driving down the road and think I need to change the channel on the radio, and start to put the car in park, while driving 70 mph down the freeway.  There have been days when I shut off the car while driving on the freeway, and couldn't figure out why I did it.  I also had tingling in my toes, numbness.  I was getting very, very low blood sugar, and shaking a lot.  I found out I had H. Pylori and took the meds for that, got rid of it (it's a bug in the tummy that eats the stomach lining), and my symptoms disappeared for a few years.  Now, I have a small amount of those symptoms, very rare to have the saliva problems, but I still get the pain in my jaw.  I have since been diagnosed with Sjogren's syndrome.  I am assuming that's where the choking on the saliva came from.  I started up with that again not long ago, but it's not often.  For the past few years, I have had lots of Lupus symptoms and was diagnosed with Lupus SLE.  i have had some tremors, three seizures, two of those in the neck area, which affected my eyes, and one seizure was just like a tonic seizure in my arms.  What a weird sensation.  Haven't had any since then, which was October 07.  My typing used to be 120 wpm, I am now down to approx. 50 wpm and I'm lucky if I can spell things right.  Not that I don't know the spelling.  I can sit here and spell it properly in my head, but type it backwards or jumbled with the right letters, just not in the right order.  Typing is part of my career!!!  So I can't flub that.  I have gotten so I have zero memory, and other days I'm as sharp as a tack.  Sometimes I'm suicidal and other times I'm euphoric.  I have often wondered if I have MS, but docs say SJogrens could be my only problem, or it could have been a medication reaction.  So, my thought for you is that maybe you have Sjogrens or Lupus, or a reaction to some medication or food.  Is it possible to put yourself on a totally different diet for a while?  Such as ONLY ripe bananas and purified water?  Bananas are the healthiest things you can eat if you aren't allergic to them.  If you can eat just Bananas for a few days and see what your symptoms are then, don't forget the purified water, not tap water, maybe you'll be positive then that it's a diet issue or NOT!!!  That's easy to check.  A co-worker of mine said his wife's symptoms disappear when she goes all Raw foods.  No processed foods at all.  It's definitely worth a try.  I'm not trying to be flippant or anything, just hoping we can try our own things once in a while===while we wait for the doc appt's that are out so far in advance!  Look up the benefits of bananas.  You'll be surprised.  And please let me know.  The more I write about it the more I want to try it myself.  I don't know if I can do it tho.  I'm HOOKED on pasta and breads!  Please let us know what you find out and keep in touch on here!  God bless you!  

[needanswers54]

I truly think that many of us feel your frustration.  It is difficult enough to feel the way you do and feel invalidated by your physician.  I know.  Even my own Mother invalidated my problems and told me that if I have MS that my education and all my hard work has been for nothing and laughed at me and now tells me that we have nothing to talk about.  A religious person told me that I must have the devil in me or I could not have the problems that I do.  I know that I love people and have  willingly practically lent or given every penny I have had in the bank to help people sometimes and I do not believe, therefore that I am a bad person.  I try to go out of my way for people:  and it has actually saved (through God's mercy) many people's lives.  They say that God only gives us what we can handle.  If that is true, then we all must be very strong people.  And if the devil is at play here, he must be finding our spirits mighty-tough to have to put us all through this.  Hang-in there, kiddo.  It appears that you have progressed in your disease further than me and I recognize how much of a downer it can be.  

As far as no lesions:  You can have lesions and not have them show-up on the MRI.  Most MRIs are 1.5 Tesla.  Some research clinics and university hospitals have 3 Tesla machines which have been able to locate smaller lesions than the 1.5 Tesla MRI machines do.  On the average the 3 Tesla MRI equipment has been locating about 25% more lesions than the 1.5 Tesla equipment.

Finally, I worked with a gentlement who's wife seemed healthy and happy with her three children.  Upon the birth of her fourth child she started having vertigo and fainting and then tremors, etc.  Her ability to walk kept decreasing until she was needing a wheel-chair all the time.  Many, many doctors and family and friends kept saying that it was all in her head and that subconsciously she just did not want to do the work to raise her children and that she was depressed.  Of course she was anxious and then depressed!  I would be more worried about psychosis if she did not have a reaction to what was going-on with her body and being unable to care for her children.  Finally, because her husband was about to crack with all the pressure at the hospital he worked at, one of the medical staff agreed to check her out, AGAIN.  Lo and behold they found a benign tumor that was causing all her problems.  They performed surgery and every was a healthy and happy family again.  So, miracles do happen.  I do not know of many, personally, as miraculous as this.  But, my point is to keep yourself and your faith as strong as you can "and keep your head high".  Try to enjoy life for the now, pray, and just keep trying to seek answers as best you can.  "The squeaky wheel gets the grease."  Let us all know how you progress...Take care and God bless...

[BondyinOz]

By the way, I know you're not well and I too am severely fatigued etc etc but I would crawl over my mother and my grandmother to get to any medication or anything that would help my body fight what is happening. But maybe that's just me :-)

[BondyinOz]

I understand how you might be feeling on an hour to hour, day to day, week to week basis. I have been trying to make others in my life understand this too. It is just terrible to feel so unwell.

I had CFS and I have to say that it is no fake condition. I am now however unwell with something else, which my Dr has said is a possible MS or Parkinsons, as I also have the hand tremor similar to how you described it, and (apparently) the micrographia (writing small). I am only 24 though so I figure that rules out Parkinsons really. I see the Neurologist on the 26th Nov.

You can get advice and support here. Keep us posted.

Mel

[epatt]

A couple things I forgot to clarify in my new post just made (above):

The diagnosis of Epilepsy was not related to my MS diagnosis.  I'd had seizures since my mid-teens but didn't know they were seizures until the Epilepsy diagnosis finally gave me the answer.  It is apparently hereditary, and there was an great uncle that had it, and a cousin - both on my mother's side of the family.

I seem to also have some hyper-reflexes in my arms.  On some occasions if I even brush my elbow against something my arm reacts violently.  However, it doesn't happen all the time.

The reason I've not taken therapy or meds for MS is that the pain, fatigue, and general malaise has kept me from being able to do much.  I'm lucky to get the strength to go to the grocery store nevermind see a doctor and be poked and prodded all over again.

[epatt]

My apologies to anyone that was offended by my use of the word "nobody" in the subject line.  Quixotic1 seemed to be.  My post did say that I appreciated the two kind responses previously received.  With something like this though it's nice to get more than just two replies.  Surely that is a logical and fair expectation for anyone.

My initial symptoms were dizziness, muscle weakness, falling, loss of coordination, and minor tremors in my hands and fingers.  This was in 1992.  There were MRIs, a Lumbar Puncture, blood tests, etc...etc...  Since that time all of the symptoms have worsened, and new problems manifested themselves.  Yes, there have been some phases of remission but only three or four in the last 15 years, and they lasted perhaps six months each, approximately.

I'm a 35 year old male.  My current symptoms are dizziness, tingling extremities, an odd buzzing in my ears and jaw (somewhat like an electric shock), constant "charlie horses" in my left calf (often in the middle of the night) that are extremely, extremely painful, blurry vision with occasional double vision, tremors in my hands/fingers that seem to come and go, a strange spasm/tic with my neck that comes and goes, overall weakness and extreme fatigue, and recently have been having some problems with swallowing, and in the middle of the night wake up choking on my own saliva.  Memory problems are also manifesting themselves despite having a photographic memory most of my life.  I am able to walk with a walker or cane depending on where I am, but use a motorized wheelchair to get around my neighborhood.  I do not drive.

Back in '92 the first diagnosis was "Chronic Fatigue Syndrome" which was quite in vogue at the time, but Doctor's I've seen since say that CFS has since been proven to be either a fake disease or too broad of a term and that CFS is probably an amalgamation of several different ailments.  Following that diagnosis of CFS some additional tests had Doctor's unsure of what was causing my problems, and there was some discussion about how some of my symptoms were consistent with Parkinson's, but being only 20 years old at the time it was ruled out as improbable.  So, it was essentially assumed that it was MS and since then my medical records state "presumed MS", but my current PCP says there is no actual evidence that I have MS, and is saying that with the lack of lesions in my spinal MRI (lumbar, thoracic, and cervical) that MS is impossible, and acting as though he is suspicious as to whether I'm being honest with my problems, which has me really sad, and pissed off.  He sees me for all of 10 minutes every two months.  He has no idea what it's like for me hour to hour, day to day, and week to week.

I've never had therapy, nor taken any medication for MS because of the pain, fatigue, and general malaise.  One year after the MS diagnosis I was diagnosed with Epilepsy having had several different kinds of seizures.  For a decade they had me on Dilantin which never worked correctly, then they tried Keppra which changed me into a crabby, mean, pushy person - the exact opposite of my personality - so discontinued that.  It was only about two years ago that they did a more complete study to determine where my seizures were originating from and prescribed Lamictal which has stopped all of my seizures completely.

It would be so nice to be able to work a normal job and have a 'normal' life, but most days even getting out of bed is the biggest accomplishment of my day due to the pain and fatigue.  Depression is now becoming a big problem which is strange considering Lamictal is also given to people with depression.

So, that's where I stand right now.  It's good to know there is a community to go to where people can offer some suggestions, advice, and support.  Thank you for your kind responses.

[Quixotic1]

"Nobody" is a slap at the two people that graciously did answer your post.  I, too, am sorry that more people didn't answer, but we don't always have something to offer.

You are at a disadvantage in a clinic that continually changes doctors.  It sounds like you are going to have to be your own best advocate to keep new doctors from continually remaking the diagnosis, so to speak.  MS is a fluid and varying disease that sometimes looks good and other times you look the wreck you feel.  

I suggest that you gather as much of the last 15 years of medcial records that you possibly can.  Kull through it and pick out the reports and the clinic notes that document what you have been throuhg.  Put it together in a notebook, broken down into 1) Clinic Notes, 2) Consultations, 3) Lab tests, 4) MRI reports (where possible also get copies of the MRIs) 5) You own timeline of your symptoms as they appeared and cleared or appeared and stayed.

Do you have any sensory problems?  Numbness and tingling, pain, visual stuff, ??  that would go against ALS.

Have you had periods of major improvement (not just stabilization) in muscular function, only to lose it again later?  This would fit MS over ALS.  You mention normal spinal MRIs, but what have your brain MRIs shown?  It sounds like at one time you did get a presumptive diagnosis of MS.  Did you ever start therapy?  Do you see a neurologist regularly and have you had other opinion?

If you answer some of these questions we'll have a lot more to go on.

Quix

[RockRose]

Have you looked into Lou Gehrig's disease,  otherwise known as ALS?  It's unusual to live with it this long,  but about 10% of patients do.

I'm hesitant to post this,  but I just had a friend who was 50 die from this,  and it really sounds like that's what you might be experiencing.   Best case,  you can rule it out.

God bless you.

[Johnny Utah]

  Hi!

  Sometimes there are no answers...


Sometimes you have to accept reality...


  Sometimes you have to just tell the voices in your head to chill.


  and sometimes YOUR DOCTOR IS JUST A MORON.


  Be your own advocate. Find another doctor that you trust, change clinics if needed, but get some stability in your health care, because you need it. Get a referral to an MS specialist, a neuro that deals with a lot of MS patients. Get checked, get tested. As a minimum I would say blood work to eliminate a lot of things like Lyme disease. An MRI and maybe an LP if the MRI doesn't show anything. The LP will check for MS and can show some infections that cannot be detect otherwise. Then get a 2nd opinion.

  I apologize for the top of this post but I was feeling a little odd. It just seemed OK and I wasn't really sure where it was going but it turned out ok. Your new, welcome to our group. Sorry no one answered your post but I was out back hitting the bong and...
just kidding. Told you, in a strange mood. Sometimes its just a matter of raising your voice. Lot of woman on here and they love to chat. OK, stop beating me up girls. Everyone here is pretty lighthearted and will bend over backwards to answer a question. Its also a great places just to drop by and say hello, let everyone know how your doing.

  We may now have the answer your looking for, but most of us have been through a period of our life when we didn't have answers either, some here still don't.

  Doctors are not always right. Take care of yourself, if you stop by again you might want to pull me out of the fire if you see them beating up on me. Throw me a life line or something. They actually flog people here.

  Chat later, everyone is giving you good advice.

  Johnny

[frann]

I am sorry you are frustated by the lack of replies... it can get hectic here and we all do care about each other... now you too!

First of all, welcome aboard... as you can tell, many are diagnosed with MS but maybe evenmore ar undiagnosed  and like you are serching for answers...

hopefully you can learn from someof the posts here... browse about MRI's, symptoms and mimics of MS... as you may already know Lyme is one, but there are others such as antiphospholipid antibody syndrome (sticky blood), B12 deficency, lupus...

so the answers are not always easy...

first of all do a timeline... it is so important.. especially since you stated you have symptoms for many years... think carefully about when things occured and be descriptive ( in fact there is a post about how to write a timeline)...very helpful...

see a good neurologist... they will do a complete exam, blood work up, should do a brain, cervical and lumbar MRI with contrast... especially if there was already a diagnosis of MS given to you.


Keep us informed and hopefully we can walk you through this.

God bless,
Frann

[Heartshome]

Hi, I'm in the same boat as you and many others here. Many years of symptoms, but no diagnosis. Try typing "MS differential diagnosis" into Google. You'll see a whole slew of other things that have similar symptoms. My PCP thought that Lupus SLE was a possiblity for me, but tests proved negative. There are so many illnesses that have similar symptoms to MS. The doctors need to test you to rule these out. It's a long and frustrating process, but hang in there!

[JI Jo]

Hi Epatt,

As has been happening with my posts lately, I type them up and when I go to post it all disappears, so now I will have to re-write the shortened version. My apologies.

I don't know much about Epilepsy so maybe you could give us some info from your perspective as to teh scope of those symptoms. Also are you taking any medication which may cause side effects or make symptoms worse?

Get one doctor who can run the relevant blood work and tests to get a bigger picture of what's going on with you. There are many things that can look like MS so it's important to rule those out as well.

Hope you get some help!

Jo

[mokibear]

I to apologize as I did not see your post. I'm still in the undiagnosed stage as are you and understand your concern. You only mention a spinal MRI, did they not do a brain MRI or any other tests? If not, you need to find a new neuro who will listen to you and run the necessary tests. Chris is right that Lyme disease is also a mimic and is something you can look into. Make a time line of your symptoms with month/year, how long they lasted etc. There is a good post called timeline 101 that will help you with that. I'll bump it up. I am sorry you are going through this but don't give up. There are numerous people on here who went through more than 1 neuro to find answers. I too am now looking for a new one. I wish you all the best.

Moki

[Millerman]

Sorry that you haven't gotten a response.  This board is pretty active and posts can get buried pretty quickly.  Lyme disease, we well as some of its coinfections, I believe, can mimic MS.  Have you had a brain MRI?  Lumbar puncture?  Even if you have, I would get tested for Lyme.  I've had some similar symtoms in the past two months (slight balance issues, weakness in legs and arms) and have already seen two neuros and will see a third next week to gather opinions and compare. Then I have an appt to see a Lyme-literate MD next month.  Lyme can look just like MS, and conventional testing is widely reported to be unreliable.  Visit some Lyme sites and find a Lyme-literate doc.  Not just any infectious diseases doc and certainly not a PCP.  I have a colleague who suffered for seven years before finally being diagnosed with Lyme; she couldn't find anyone who knew what to look for and she thanks the doc she did find for her ability to function.  It certainly may not be Lyme, but when the stakes are this high, leave no stone unturned.  Best of luck.

Chris