limbo land
 

I have been dealing with ms symptoms for 4 years now. The first 2 were mainly lumbness, tiredness, and coordination problems. Then things changed. I had developed extreme pain in my legs. I can't walk for a long distance and it affects my quality of life with my career and family. The doctors have gone back and forth with whether I have ms or not. Symptom wise is seems likely, yet the MRI's and other test (3 LP) don't seem to say anything.

I am quite frustrated! 4 years of struggling and still no one can seem to give me any confirmation with anything. Since they can't diagnose me, they are very reluctant to treat my symptoms.

I have ms specialist, then general neurologist, and today another ms specialist. The general neurologist put me on the copazone and today the specialist said he didn't think it was necessary.

Ah, the left hand giveth, and the right hand taketh away! welcome to the medical world of MS. :cool:

If you get 10 MS MDs in the same room at the same time, talking about the same patient, you will probably get 10 differing diagnosis, AND 10 different treatment plans.

Your best bet is to find a neuro/ms MD who you like, trust, and can believe in, and stick with him/her.

I hope you are able to get everyone on the same page, the rest of us have been trying to do that too. :hug:

Dej is smart! Glad to have you here 13! :D:wink:

i totally agree with D's advice.
i'm sorry you're going thru this. it's so hard to feel sick and not be able to be dx'd.

i'm glad you found us. looking forward to hearing more about you.

After 45 years with MS, I'm not in Limboland, but, just wanted you to know, you are not alone. I think it's harder now to get a MS DX, than it was in the old days..:D

I understand the Specialist's point of view. I was in remission for almost 20 yrs without Meds.

Hang in there and stick with us....this is the place..:hug:

Hello and welcome ~!

First I just want to let you know that you have support and understanding here ok? I was on my limbo journey for years too.

After 4 years of yes..no..maybe so.. and a change in insurance.. me MS doc who was monitoring me for MS and other things..finally said NO, I do not think its MS. Now that should be good news but SOMETHING is wrong..and not knowing..well..as you know is hard to take.

After awhile..I gave up wanting an MS DX and just wanted help for my symptoms. That took off some of the pressure. I also sought out this amazing nutritionist who evaluated me for toxins..deficiencies and built up my inflammed, toxic systems. I had good results.

But..I tried other kinds of specialists..2 Rheumies and 2 other kinds of neurologists. They ALL think something is wrong. But..by the Grace of God.. my newest PCP said her mother had a very complex case like mine, sent me to yet another specialist. He knew not only what I had and comfirmed it (an autonomic disorder) but says its usually accompanied by an autoimmune disorder. AND he thinks I have another problem as well. He has the ONLY autonomic testing lab in this region so many neurologists do not have his expertise or knowledge. I thank my PCP for this amazing referral.

Sometimes its NOT MS..but other neuro disorders with or without a name or in my case a couple of disorders.

I also detoxed heavy metals etc out of my system and many of my neuro symptoms disappeared or improved...like fatigue and balance.

Because we live in a polluted world of ingesting and breathing chemicals many many MS type disorders are popping up.

Dont give up.. but like me.. dont box yourself into ONE diagnosis..or only get treated for MS when its maybe another disorder.

Good luck in your search. ASk for spiritual guidance...its works

Warmly, Jan

Jan

How did you make out with the autonomic testing. I have mentioned before i was a lab rat at vanderbuilt Meddical Center in Nashville Tn. I am doing much better.

I wish you well and let us know how you are doing
laurie f

Monka - I've lost count of how many drs I've seen. I've been in limbo since my 1st CT in '02.

I bet Sally is right, it seems harder to get a dx now than ever. They found brain lesions on my 1st MRI, but other tests don't confirm. So here I sit. They found C spine problems and something in my T spine, but something else is wrong. I may never know what it is.

There are a lot of us who understand the frustration of where you are, although our stories are different. I keep reading and looking for ideas. Sometimes I lay off the drs and tests, sometimes I get back at it. You do what is right for you at the time. It's all you can do.


Do hang around and ask whatever comes to mind - a lot of wise folks here to help you through this.

I wish you the best.

:hug:

Welcome to the LImboland Club... the club no one wants to belong to. I can fully sympathize with the "well, they don't know what is wrong with me yet" explanations and the looks people give since you don't officially have a name for your problem.

Sometimes I just wish they would figure it out, say it out loud or something - just so I could actually move forwrd with (hopefully) effective treatment to stop it from getting worse - or at least stop it from progressing a fast.

Hang in there, you have the right place to ask questions, vent, comiserate and find just plain all arounf good people who have been there and can show you the way forward;)

As for your new membership in the Limboland club -
we will teach you the secret handshake and our official motto is "But you looks sooo good!" LOL
:Demonstration::welcome_sign::grouphug:

jane