Had my MS specialist Appt...SO FRUSTRATED!

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Regular Member

Date Joined Oct 2006
Total Posts : 77
   Posted 11/21/2006 11:44 AM (GMT -6)   
OK, so saw the MS specialist today. Says that she is "leaning towards the MS diagnosis" but wont tell me for sure!!! Says she wants to do another scan in 6 MONTHS!!!! So that means I wait for 6 more months??? I have lesions and I have numbness and positive LP! Says its "most probably MS." Wants to do an MRI of my thoracic spine which hasnt been done yet.
I said "ok fine, but what about my hand which is getting no better at all?" And she says "I really dont know how to treat that. I could give you an ivy of steroids but I dont think it would help now. It might be permanent damage..." WHAT THE HELL! So I said "Ok, so what would put you over the line regarding the diagnosis?" She said "A change in lesions or another major symptom..." So I was like "So I have to wait for my leg to go before I know anything for sure?" ARGHHHHHH! She wont give me teh medication because she said it wont make a difference between now and the next scan anyways, and wont relieve my symptoms so no point.
She also did another neurological exam and said I have right sided weakness generally in both my hand and my arm. I KNOW THAT!!! My feet hurt! My leg pains and numbs up! HOW CAN I NOT HAVE A DFEINITE DIAGNOSIS?? THERE IS SOMETHING MAJOR GOING ON IN MY BODY! My hand is already GONE. I dont want anything else going! I am right handed!!!!! And my hand doesnt work right!!!
And she tells me "Well, your symptoms arent evident to anyone else by looking at you." I said "Yes, they are not, but they are TO ME. I cant WRITE or TYPE properly! I had to get new software at work cause it hurts me to type! I have to take breaks when I wash my hair! I cant bend my hand! That is significant TO ME." ARGHHHH!
Am REALLY aggravated... Oh well, I guess i just wait and hope another body part doesnt numb up and stay that way! MEanwhile at least I have europe to look forward to...

Regular Member

Date Joined Apr 2006
Total Posts : 366
   Posted 11/21/2006 11:53 AM (GMT -6)   

I am baffled!! I feel your anger and pain! I wish I knew what to tell you to do but I don't. Hopefully someone else will be along soon to give you advice.

I am here for you though if you ever want to vent!

When everything's coming your way, you're in the wrong lane.

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 11/21/2006 12:01 PM (GMT -6)   
I'm sorry the doctor wasn't able to give you a definite diagnosis yet. If indeed there aren't visible signs on the outside, she is being prudent in wanting to watch and wait and see if anything further develops...or if these things fade away in time, and all is well. As I've said before..and others here have backed me up...steroids are really a "last ditch" treatment, if things are so bad that you really can't function,

as they have serious and long-term side effects. So again, her caution there is warranted.

I do appreciate your frustration...but erring on the side of caution is probably a good thing, given the long-term consequences of both giving you a diagnosis that may not be accurate, or prescribing drugs for a condition you may not actually have. Six months seems a LONG way away, I know. In the meantime, keep track of anything new, and be sure to call to report it.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Regular Member

Date Joined Oct 2006
Total Posts : 77
   Posted 11/21/2006 12:15 PM (GMT -6)   
What is frustrating is knowing there is a clear neurological issue here that is affecting my body. The positive LP and lesions say that.... And I said "if its not MS what is it?" And she said "There are other inflammatory conditions that cause these things but you have already been tested for them and do not have them." So that probably means it IS ms... I just dont want to wait that long. Do you think a second opinion is warranted?

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 11/21/2006 1:05 PM (GMT -6)   
Do you have copies of your medical tests that have already been done? You could certainly seek a second opinion. Another doctor may not be as cautious as she seems to be. Be prepared for another doctor to want to repeat all the testing (will your insurance cover a second opinion? Some will, some won't, and the tests can be very expensive!). With a positive LP and lesions too, it seems reasonable that you do have MS, but you should also know that some neurologists are deciding to NOT treat "mild" cases right away with the drugs (and the Mayo clinic backs them up on this), but waiting to see if the MS progresses sufficiently to threaten significant impairment of the person. If she is telling you that what you're experiencing is not visible to the "outside world", then she has decided that -- if it is MS -- it is mild, and a 6 month wait isn't signficant.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Regular Member

Date Joined May 2006
Total Posts : 137
   Posted 11/21/2006 2:00 PM (GMT -6)   
Warranted? That decision is one only you can make. This forum will tell you, in most cases, that we have all been where you are right now.
Some are still waiting, after a year or years, (yes I said years) for a conclusive DX of some kind. Realizing that the frustration you feel, has been
felt by others with all kinds of diseases, including MS, doesn't help. It didn't help me, it won't help you. There is a part of us that wants an answer, and we want it now. But, we are not thinking about what a Mis-diagnoised situation would mean, because we pushed to hard.

Only you can do what you feel you need to do. I personally don't see any harm in getting a second opinon, but you need to realize that they
may want further tests of their own that you have already had. They may want to talk to your present doctor. You may not get in for months
to see another doctor as a new patient. They may take a wait and see attitude too. In the meantime, nothing would have changed. You still would have symptoms, frustrations, etc.

I learned that it is not the DX that is important. It is trying to control or comfort......the pain, the symptoms, the anxiety, the exhaustion and what ever else is pulling you down. After all, if you have MS, that is what they will do anyway, and then talk about CRABS. Slowing down the progression. But being able to get on with your life, makes a world of difference.

As I see it, slowing the progression is an important point. IF you do have MS, the general advice is to start you on CRABS ASAP. Therefore, if your current doctor is unsure, then a second opinon may make sense. Time is important in this case.

But Uppity is right. Steriods are not something to take lightly and could cause more problems than you have now. Likewise, it is never wise to take meds
that aren't for a specific purpose. For example taking Provigil (or something like it) for a DX of exhaustion, not MS, makes sense. Taking Baclofen for a DX of the spacity of legs, not MS, makes sense. Etc.

But the bottom line, as always.....is do what you need to do. I had 3 neuros. The first was a huge mistake, claiming that all that was wrong was my
hypertension medicine needed to be changed. It took a Opthomologist/Neuro to take a good look at things, and even when she actually wrote on the her files that I had MS, she still refered me to an MS specialist for another look, another point of view. I was not happy that my DX took over 6 months
but I am grateful now because there can be very little doubt that I don't have MS. They looked under every rock on this planet I think.

But, I also have to say, that I was being treated almost the whole time by my family doctor for symptoms, pain, exhaustion, depression and other things that I am still dealing with. It made the time easier to manage. But the time they took did take its toll. I wasn't on CRABS during that time and there is, in my case, a difference in my first few MRI's and the one after I got the "official" DX 6 months later. Would CRABS have slowed it down and perhaps I would not have had new leisons that appeared during the wait? We will never know and frankly it is water under the bridge.

Weigh the facts, and while doing so, get some help for the problems of your body and then proceed down the road. And realize, that nothing is as simple or as straight forward as you would wish, with this disease or any other un-curable problem. Otherwise we would have a quick DX and a quick cure. For now you have given your doctor a puzzle of a thousand pieces and the picture is yet to show itself.

New Member

Date Joined Nov 2006
Total Posts : 2
   Posted 11/21/2006 6:48 PM (GMT -6)   

just thought u should know u are not alone my name is harmony and like u i have been diagnosed w the possibility of ms but, i have no visable lesions i had an episode that lasted 3 months it started w my hands got tested for carpultunnel negetive then had horrible pains in my back went to hospital got

tested for hole list of things negetive so they shot me up w something i dont know what it was but my dr said i had site reaction and this is only the beginning all test for real problem negetive then the legs could barely walk went to hospital mri's all negetive they say all signs point to ms but they would have to wait for another eppisode to make a pattern now im on a list of meds they all treat my now conditions i never really got all better but, i also haven't had a true flare up either so everyday my legs burn and i get so tired life normal i think not but, just live one day at time and stay positve thats what im trying hope i have helped you some

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