ANY HELP APPRECIATED

[atino]

Hello. I am a 40 year old with many symptoms of MS. This all started about 41/2 years ago when I had tingling and numbness in my face. The numbness went away in 24 hours but I had periodical tingling for months. I went on with life and about 1 year ago I started to feel as if I could not swallow. I lost 50 lbs and thought I was dying. We never did find a diagnosis but things when back to normal when I became pregnant. About 3 months ago I started with tingling and weakness on the left side of my body and I was tripping over nothing. 3 weeks ago, I got up from the computer and could not move my left leg. The ER doctor said I was having an “acute exacerbation of MS” I have followed up with a neurologist and had a negative brain MRI and a negative Visual evoked potential. The neurologist did not order any further testing and I still can not use my left leg and my left hand and arm are becoming weaker.  The neurologist did say that I have hyperactive reflexes and loss of balance. The ER doctor also noted that I had a decrease in my peripheral vision of my left eye. The other symptoms I am having are;

Tingling in left side of body
Dizziness
Weakness on left side of body
Fatigue
Loss of balance and coordination

I currently use a walker to get around and at my wits end. Should I seek out another doctor that specializes in MS or go another route. I am very worried about the hyperactive reflexes because research says that they are usually a sign of neurological problems. Any suggestions would be appreciated.

Annette

[sllowe]

Hi Annette,

I'm glad you've joined us.  Oh my, I wish your Dr. would have dug deeper on your behalf.  

Stay with us.  We can help you get ready for a new Dr. appt. when you are ready to do so.  I really think you should as all above had said, it's so important to find out what is going on.

When you are ready, we can also help you out with a timeline, and start putting some dates to your symptoms and Dr. visits etc.  Do you have copies of results from your prior workups?  That will be an important part of moving forward.

Again, Welcome!
Shelly

[atino]

Thanks for giving me some useful information. I really appreciated just hearing from someone else who is going through the same process. I hope you have a good doctor.It seems that a good doctor is the key to finding a diagnosis. If you have any any other advice I would love to hear it. Thanks for everything, I am sure I will be on the forum many times.
Thanks again,
Annette

[atino]

Thanks for the great welcome. I have read most of the health page and it has been a great help. Sometimes I feel like maybe I am going crazy and dreaming up these symptoms. My husband laughs and says that when it effects my shopping and beach time, something is very wrong.LOL I have decided that I am going to try to laugh my way through this process but crying does help sometimes.
I also think an MS specialist may be in order but I am in the process of trying to find one that will except my insurance. We are military and this is a fight on its own since we have to have everything authorized by the insurance company and the do not want to pay for good doctors. I know this will be a fight and i have to try not to give up. Thanks so much for the support and I am sure I will be writing on this forum often.
Thanks for listening,
Annette  

[Rena705]

Hello Annette and Welcome to the MS Forum!  I am so sorry to hear about the difficulties that you have been having but you have come to the right place!  There is a great group of people here that are all in varying degrees of MS, some in between diagnosis (limbo-land) and some that thought perhaps they might have MS but were diagnosed with something else but have chosen to stay here in our forum!  While we are not doctors and can't possibly make a diagnosis, we can provide you with the information you need to possibly find an answer for your symptoms!

It seems as though you have been seen by an neurologist that is not too interested in finding out what is happening and unfortunately that is something that happens all too often.  The symptoms that you have related here seem to me to be possibly related to MS and regardless of the fact that no lesions were shown on your MRI does not mean that they are not there!  I am surprised that the neuro ordered VEP testing before having a Lumbar Puncture (LP) done to rule out Oligloconal Banding in your spinal fluid as well as various other "mimics" to MS first.

What I would suggest is that in the upper right hand corner of the page you will find Health Pages.  These pages contain a cornucopia of information on MS and it was compiled by members of this Forum for the use of new and old members.  If you take the time to read some of this information you will understand better the symptoms of MS and how to go about getting a diagnosis.  Personally I think you need to be referred to an MS Specialist.  The neurologist you are seeing obviously hasn't been able to find the answer for your symptoms but he should have ordered an LP long ago.

An MS Specialist has the experience and knowledge to read an MRI differently than a neurologist or a radiologist and may be able to find lesions that the other doctors could not but sometimes the lesions are not evident for some time but you still may have MS.  This is why the LP is so important.

Annette, I am know that there are other's that can relate to the frustration that you have been feeling while looking for an answer to your health issues.  It is frustrating but this is made even moreso due to the fact that you have a neurologist that isn't completing the diagnostic process.  You could ask your current neurologist about having an LP but realistically if you are able to see an MS Specialist I think you will be happier with the results.  

Please know that the group of people on this Forum are a great group and if you need to rant, rave, laugh or cry, we are here 24/7 for you.  Fridays and weekends can be a little slow right now being that it is summer and we are all volunteers but be assured that someone will get to any questions you may have as soon as we can ok?  I hope that you will stick around and let us know how things are going for you...we are all friends here and everyone has something to offer and I hope that you may be able to help someone with your experiences in the future as well.

Lots of Hugs,

Rena

[aiMelissa]

Yes, go see another doctor.  Something I have found on this board is that all MRI machines are not equal.  A lady (and she may read this, hope she doesn't mind me sharing) told me that she had and MRI and 1.5 tesla (that's how they measure the strength) and it was normal and she then had another MRI at 3 tesla that showed 6 lesions.  So...just because your MRI was normal doesn't completely exclude stuff.  If you scroll up to the top of the page on the right side and read the "Health Pages" it has a lot of useful information in it.

I also have symptoms and am waiting for a diagnosis.  It can take time and it is VERY frustrated.  But do not settle because one doctor doens't think  you have it.  You may or may not have MS, but OBVIOUSLY you have something, so I would strongly suggest you see someone else.  I have all the symptoms you listed btu I am able to walk just fine, thank God.

MS is hard to diagnose.  They have to rule out everything else but from my understanding, even with a negativie MRI and VEP, with clinically significant events (ie..not being able to walk) a diagosis can be made if everything else is ruled out.

Good luck to you and if I am wrong on any of this some one please correct me, lol, I am still learning.


Melissa
Primary Sclerosing Cholangitis, Raynauds Syndrome, Hypothyroid, and ? in limboland