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Avatar universal

Filling in the gaps

I have had several tests to rule out MS, they have all come back as normal. At which point do I accept this for what it is and move on, or do I push to fill in the gaps and have the other things done?

Have HAD:

- cursory neuro eval
- CBC blood work (Lyme and B12 were in there somewhere)
- MRI: w/without contrast of brain and c-spine
- EEG
- VEP
- BAER

Have NOT HAD:

- a THOROUGH, at-least-30-minutes, in-detail Neuro evaluation
- MRI of t-spine
- Somatosensory
- LP (to me this is of "last resort")

I have an appt. with the pcp next Friday, bright and early at 9 AM! I don't know if it's worth my time complaining to him about the neuro (what could he do about it?) I should focus on what to DO, not whine about what didn't happen, that can't be changed. Focus and move on.

But how to focus? And how to move on?

Dh and I originally thought we'd wait until the end of summer and see how I feel. Then I thought I ought to be seen while I'm having these symptoms, instead of waiting, what if they disappear?! I don't take any meds, am okay, just move slowly and carefully. But grating romano last night really wore me out. This just isn't "normal"!!!!!

Suzanne
7 Responses
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335728 tn?1331414412
Suzanne,

Was it an MS Specialist that you have been seeing or a neurologist?

What sort of relationship do you have with your pcp?  I wasn't sure what my relationship was with my gp until I asked her.  I really wasn't getting the information or assistance that I thought I was until I finally decided to confront her with it.  I asked her point blank if she was still interested in helping me or can she help me find someone else.  She responded honestly that she really does not have much knowledge of MS and that makes it difficult for her but she said that she will make an effort to work with my MS Specialist to ensure that I get the help I need.

At this point I am not sure that her effort is enough and I feel that I may have to search out a gp that has a decided interest in MS.  You have to remember though that they are doing a service for you and I think that for the most part, these physicians are taken aback when you do question them about your care in general.  They are not going to want a patient to move on to another physician taking with them complaints about their last physician or going to the AMA complaining that they are not getting the care they require.

I believe though that if you were to ask your pcp if he/she is willing to work closely with your neurologist or assist you in referring you to an MS Specialist because your symptoms are not getting any better.  

To be honest, my hubby and I thought the same thing...maybe if we just wait until spring...it isn't working so far...the symptoms are not going away!  What if your symptoms worsen over the summer...I think you should try to get your MRI, a thorough neurological examination and your evoked response testing.  If these show nothing and you are still suffering from symptoms, have the LP!  Tell your pcp that you need to have these tests...remember, you have hired him to help you, not the other way around right.

Good Luck honey and I hope you have some success!

Lots of Hugs,

Rena
Helpful - 0
335728 tn?1331414412
Suzanne...after reading your post about being sensitive to touch...you really need to know if your pcp is going to listen to you!  You need to have him HEAR what  you are saying and not just nod and jot down notes that may not get you anywhere!

I have to stress again how important it is to remind him that he is working for you and you need his help...write down all of your symptoms...make a timeline if need be for you and for him...let him know that you are very concerned about these symptoms and you need some care...DON'T LEAVE HIS OFFICE UNTIL HE DOES SOMETHING!!

And please remember that you are NOT WHINING!  You are the patient, he is the doctor and it is his job to listen to you...just make sure he is listening ok?

Lots of hugs,

Rena
Helpful - 0
429949 tn?1224691579
I had the same fear of having an LP done. I had a possitive MRI after my onset, but didn't  

have a clear enough picture to dx MS. The radiologist thought I had something called

PML which is usually fatal within months to a year. My neuro disagreed with  the

radiologist and said that an LP  and an HIV test, since this is usually found in HIV  

positive patients. My HIV test was negative and even though I was scared to death of an

LP I knew I had to have it to rule this out completely. It was negative too by the way for

everything. I was so relieved. IT was a little uncomfortable, but it did

hurt at all, just pressure. My neuro used a smaller cath     He said to lessen the chance of

a leak of fluid. I had to lay as still as I could for 24 hours and my lower back felt like I had

been  kicked by a mule, mostly sore for one or two days. I was right back up the second

day, just had to  take it easy for a week or so, no lifting. I didn't one of those headaches

I read about. Maybe because I layed still for most of the first  24 hours because I didn't

want one! OR maybe it was because he used a smaller cath. Anyway it wasn't nearly as

bad as I thought it was going to be, and I have a panic disorder.  I was glad I had it after I

got over the fear of it. It answered a lot of questions by ruling some things out. I know this

all is scary but everything will work out. I'm still going through testing myself but I found

out that I am stronger than I ever imagined I could be. Good luck and I'll keep you in my

prayers.
Helpful - 0
Avatar universal
I asked my pcp for a referral to a neuro group that I knew had a specific MS doctor, they have a specific MS Care Center on the premises.

Unfortunately, I didn't ask for THAT dr., so I got a general neuro. The MS guy is down the hall. I am thinking he's going to look at the notes from his confrere down the lane and since they are coworkers, he might not like me complaining about his buddy.....???

(I know it's rude to get into someone's mind and speak for him, shame on me. I haven't even met the guy!)

I did speak to someone who has a dx of MS and was in the same situation: she had a neuro in the group, he gave her a problem, so she went to the MS guy and she thinks he is the best. So there is hope!!!

As for my pcp; he is okay. Not bad at all, just kind of seems hesitant when I ask him to step out and refer me for something. He DOES do it, but seems uncomfortable at first.

I will really want to get to the bottom of this next week.

Suzanne
Helpful - 0
Avatar universal
Thanks for the info on the LP. If I need to have it, uhh, well, don't want it, lol, but I do understand the necessity and would do it. I just thought it was the very last end test that is done when all else has come back as being normal test results.

I am so sorry you got that erroneous radiologist report ~ you must have been so nervous waiting for results!

Thanks for the support,

Suzanne
Helpful - 0
Avatar universal
Hi Suzanne,
   Since your friend had a good experience with the MS neuro, maybe you should give it a try!!  

Elaine
Helpful - 0
Avatar universal
BY ALL MEANS TALK WITH YOUR PCP, HE SEEMS TO BE WILLING TO WORK WITH YOU AND THATS A PLUS.

MY VEP DONE APRIL 2004 , IT CAME BACK NORMAL, MY VEP NOVEMBER 2007 CAME BACK ABNORMAL BILATERIALLY. IN THAT SHORT OF TIME THE OPTICAL NEURITIS MANIFESTED TO THAT POINT.

I HAD TO YIPE AT MY NEURO TO HAVE THE TEST REPEATED,WHAT MAY NOT SHOW NOW,MAY SHOW LATER.

MY LEFT EYE WAS IN SO MUCH PAIN AND THE VISION WAS DISTORTED,SO IT HELPS TO ASK FOR TEST.

THE LP ISN'T THAT BAD.MY FIRST AND SECOND CAME BACK WITH HIGHLY ELEVATED MYELIN BASIC PROTEIN ONLY.IT SHOWED MY NEURO THAT MY BODY WAS ATTACKING ITS NERVE SHEATH.

SOMETIMES SYMPTOMS REAR THERE UGLY SIDE AND IT MAY TAKE TIME FOR TEST TO BE POSITIVE.

YOU KNOW HOW YOU FEEL,KEEP PURSUING A DX.

ASK FOR FURTHER TESTING,

T-LYNN
Helpful - 0
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