the "i don't know" syndrome!!

[amanda81]

I am fairly new on here. I have only posted one other time. I had mentioned in my prior post that i had recently seen a DR. for my symptoms i was having and the DR. was thinking it was MS. Since my last post i have had a bunch of test..such as EEG, MRI of the brain and lower back and a leg study and more blood work and it was all normal. I did have slow responses to the EEG though and I can't get a straight answer from both the DR and neuro what that means. My biggiest fear was that they would give up and so my fear came true..i had a DR appt today and she told me that she has ran all the test she can think of and so has the neuro and that she didnt know what else to do. the neuro chaulked it up to a pinched nerve in my hip...but i doubt a pinched nerve in my hip will make half of my face numb and severe muscle weakness in my whole body...this Dr. makes the 4th DR. i have seen. What else am i suppose to do? The only thing i do know that the DR. and neuro confirmed together was that i have neuropathy in both my legs and muscle weakness on the left side of the body and slow eeg results. oh and a long list of symptoms.....so where do i go from here? any advice would help.

[KyleW]

Have you been, or can you get, upt to Durham to see anyonenat Duke?

[GIGI69]

Don't YOU Give Up

There are doctors out there that will keep working with you. It is frustrating to continue searching for doctors but don't stop. Was your doctor an MS specialist? If not look for one. You may also look for for a teaching hospital

[ApVish]

Hang in there!

I would suggest you to try one of the MS clinics and see what they have to say.

We are in a similar boat, found lesions in MRI by acciddent and all other tests coming back normal/negative and no symptoms so far. So obviously none of the neuros are commiting to say if this is MS. Already been to 2 neuros and waiting for an appt in January....(yeah u read it right..January) with a Neuro in MS clinic.

[amanda81]

thank you for the advice

the doctor nor the neuro were MS specialists. I really don't know how to find a MS specialist. I have not been to duke either. can yall tell me how to find a specialist? do have to be refered?

[cosake]

I would contact the local chapter of the NMSS.

They can give you a list of MS specialists in your area. That doesn't mean that they are endorsing the specialist, however.

This will give you a direction to go in. Someone will figure it out. Don't give up - your instincts are telling you that something is not right with your body.

A friend of mine has a daughter who had weird MS-type symptoms and no one could figure out what was going on with her. About 5 or 6 doctors later, a GP determined that she has celiac's ! She has changed her diet and is doing much better.

Don't give up !

[amanda81]

thank you

I will try to find a specialist. I really thought that this DR. was gonna be different from the rest. I can't belive that it takes a long time for a dx. I have read so many blogs on here where people have waited months to years. why is MS so hard to detect? I am so happy that I found this website. I know that I am not alone either now. thank u

[catmama]

Head to a University

Hi Amanda81,

I would suggest that you start looking at University hospitals. I would start by looking at the Neurology department and look for something like "specialty areas" or "clinical departments", then look for a MS clinic.

Keep looking until you find a University hospital with a MS clinic. I go to the University of San Francisco, Ca., which is about a 1 1/2 to 2 hour drive from my home, but well worth it.

I had 2 local neuros who were thought to be "MS Specialists", that basically wasted 5 years of my life. Find someone who ONLY specializes in MS, not other neuro disorders i.e., epilepsy, parkinson's, alzhiemers, strokes, etc., this will make a world of difference.

I would also suggest that you get copies of everything you have had done since the onset of your symptoms, and I mean everything! If you don't already have everything, start collecting as soon as you can, because your appointment may be a couple of months or more down the road and you'll want to have all your records in order. (Much less stressful than trying to run around and gather everything in a rush, you know?)

You know your body better than anyone, keep pushing, and don't give up until you get some answers to your satisfaction.

Good Luck,
Cat