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Posted 10/16/2009 2:19 PM (GMT 0)
Hi, i am new to this site but i found it when i was doing some research on numbness adn tingling.

 

For 2 years i have been fighting doctors because i have numbness and tingling in my hands, legs, feet and back. Weakness, fatigue, majorly seems like i am always tired. Pain in arms and legs. I have memory problems and concentration issues and my eyes are doing funny things. I have tremors they can get pretty bad. Heat sensitive, spasms. Anyway my MRI's and CT scans show lesions and the reports say highly probable MS. sometimes i feel okay and other times its like i am 80 yrs old or something. Its good times and bad

 

the thing is is that the MS did not show in my spinal tap, there was a couple markers that showed possibility but they said overall negative. Since that came back doctors say its in my head, they say i am faking it. I have 4 boys that are my life i would not fake something like this. one doc has given me meds for tremors and pain and spasms, they help but i still have issues. they are neurontin and tizanidine.

 

i was wondering if anyone had issues getting diagnosed. Am i alone in this

Posted 10/17/2009 3:04 AM (GMT 0)
Oh my gosh!  No you are not alone in this.  For most people, it was a long miserable battle getting a diagnosis.  It does not need to show up in your spinal fluid for it to be MS.  I would love for you to NOT have MS however................ 

You need a second opinion and preferably one from an MS specialist.  ALL of your symptoms are classic for MS.  You need to get this resolved.  If a second opinion doesn't show any reasonable explanation for the lesions, then get a third.

What are the doctors saying about those lesions?  Did you make up those in your head too?  It is quite a trick to make up an MRI and a CT scan with probable MS lesions. 

Unfortunately, a lot of MS symptoms also come off as anxiety and stress related.  I am assuming you are a woman, which makes it even more likely that your symptoms are not being taken seriously.  "She is a tired mom of four.......she is stressed and wanting some attention.  She is fine" 

You are SO not alone in this.  I hope you get some answers real soon.  Welcome to HW. 

Posted 10/17/2009 3:35 AM (GMT 0)
Gretchen is right, your situation is very typical.  I have four kids and was told it was probably just stress for four years.  The lesions don't lie, keep looking until you find a doctor who takes you seriously.  With the lesions you have, they should be starting you on medication to help slow the progression of the disease. 

P.S. My spinal tap was considered normal, and yet I still have MS.

Good luck.

 

Posted 10/17/2009 3:10 PM (GMT 0)
Thank you so much for your replys. i figured i was not alone but just wanted to know. and yes you guys pinned it pretty much perfect. I have been to several docs and since the one labeld me a fake thats what all are saying. They are telling me that the lesions could be from migraines which also run in the family and me. i think its crap, i have not had a migraine in months and still having symptoms.

i found a new doctor in greeley, a neurologist that is specialised in MS because he has MS. So we will see, he had me do another MRI and put me on a med for migraines to try and rule those out. they think i can have migraines in my body not just my head. UGH. i am so frustrated.  i am sure you all felt the same and still do. I know its not in my head its not made up that i have these problems, i hate it and i want to be the way i was, i dont have that choice, neither do you all. And i am sure you all have felt that way too.

i just need more support. and to be able to talk to people that have been through it.

thank you

Posted 10/17/2009 4:15 PM (GMT 0)
You have our support.  Please know that.
Posted 10/28/2009 9:13 PM (GMT 0)
Hi there, a bit late to respond to this, better late than never I guess.  When I read your post Angel, I thought that you were talking about me.. I could not have written a bio of me better than what you posted - right down to the point where the doctor said you are faking. 

It is so frustrating to hear this, again, and again and again.  I mean really frustrating, and although you may feel alone on this journey, you are not, cause there are a zillion people out there that have gotten the same reaction from there doctors as you have.

I do not know if you know of a couple of tricks to minimize your symptoms, but fatigue will bring all of what you are experiencing out into the open - everything from the tingling to the weakiness to the cognitive skills - everything.  Bottom line here, where u get tired - take a nap, and don't wait till you are bone aching tired...

Another thing that will bring on your symptoms and even some you did not know that you had is heat.  For me, its the worst.  Again all of the above surfaces, and to manifest things even more, getting to warm bring on fatigue, so you kind of get double whammied.

So get rest when u need it, and stay cool

Gary

Posted 10/29/2009 2:28 AM (GMT 0)
Have they done other tests?  blood tests or a lumbar puncture/spinal tap?

i was diagnosed after my MRI brain showed likely MS, my MRI spine showed no lesions, but my lumbar puncture/spinal tap results showed i had elevated proteins in my CSF which was enough evidence for my doctor to start me on treatment.

Posted 10/31/2009 3:12 PM (GMT 0)
Thank again for the replys

I have had the spinal tap and i guess it was inconclusive. they said there was like one elevated level but not enough to diagnose.

Heat does bother me very much so, i get tired sometimes nauseas and little more clumsy. I also do take naps everyday.

the doc says he is going to keep a watch on me, repeat MRI's stuff like that, but i'm losing my health insurance as of today so i dont know. I am fighting to keep it on the fact alone that my medications out-of-pocket cost is $648. I cant afford that and without them it is so hard just to move.

I'm pretty much lost and about to give up for now. Until it gets so bqd that they  have no choice but to do something.

I'm tired of hearing that its headaches that cause it, or that i'm faking it. I know there are so many people out there that are having some of the same issues. i wish them luck as well, i know for me it has been a hard long road and it is not over yet.

thank you everybody, i also hope i can help out sometimes too with my experiences and even just be someone to talk to. if anyone needs to.

thanks again

Posted 11/9/2009 12:43 AM (GMT 0)
I had to go to probably 30 different docotors maybe more over 3+ years before I got my ms diagnosis. My aunt had ms and my uncle has lupus so I certainly have a family history. I believe I probably have lupus as well but I gave up on going to anymore doctors. It gets sickening being told you're lying and the doctors thinking you're making it up. Some of these people have huge lists of conditions they have. You can see why the doctors don't believe us. They don't know if we really do have 1 disease or 10. It's hard to know and nowadys there are a lot of pillseekers and ambulance chasers out there so they want to make a very accurate diagnosis and sometimes we are the ones who pay for it. Ms is also very hard to distinguish from other conditions. Hopefully you'll get an answer. Good luck~!


This is not meant to offend anyone!
Posted 11/9/2009 2:44 AM (GMT 0)
Good post, mnsweetie.  You were not offensive at all.  Welcome to healingwell.  I am glad you are here.  Your experience is valued. 
Posted 11/16/2009 12:26 PM (GMT 0)
Wow that soooo sounds like me.... It is a hard road to find a Dr. who believes you are telling the truth. I have had so many Dr's tell me it was in my head, I am not a hypochondriac(sp). I even had optic neuritis twice and they still say well "That doesnt mean MS." I have 6 lesions on my brain..still no MS. So I feel for you very much, and also this is the BEST site you will find. The nicest and most informative people...take care and wish you all the best in you search. Beannie
Posted 11/16/2009 2:13 PM (GMT 0)
Beanie,

I want to go to an appointment with you!  I want to hear what your neuro has to say!  I can't believe they just sit and wait with those six lesions and optic neuritis TWICE!!!  Grrrrrrrrr. I know you have been on here lots; I am sorry I can't remember ~ have you been to an MS specialist?  And what do they say about those lesions?  What is their explanation?  I know this is a diagnosis of exclusion but come on!  Ok sorry to rant on someone elses thread. 

Beanie, I am very frustrated for you.

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