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.

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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.

[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

[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

[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

[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!

[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

[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

[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.

[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