Neuro appt yesterday... more confusion today

[marti]

I had my 6 month appointment with the neuro yesterday. He's a good doctor.. understands MS, gives me plenty of time and touches on all my other problems.

He told me he was very pleased that the MS was stable and it looked like I would have "a good life". This was good news to me, but it didn't really ease my mind. The last year has been full of oddball symptoms, lots of pain, anxiety, fatigue and dizziness... increased everything.

I had a written list of my questions and all the strange horrible stuff that has been going on. I admit, I am high anxiety! Trying to be caregiver to my husband and myself. I've been making the rounds of all my specialists to try to eliminate some of these problems from the MS pile. All the various doctors keep dumping everything right back in that pile.

I was having a pretty good day when I saw him yesterday. Things seemed normal to me and to him. So I can see why he would think everything was hunky-dory.

I have been off the DMD's for awhile now and am holding my own except for the misery of symptoms.

So, I just don't know what to think. I suggested a MRI but he refused. Said his exam eliminated the need for a new scan.

Do any of you feel absolutely awful most of the time, but have good reports from your neuros? I assume this is a problem for them as well since MS is somewhat misunderstood. I guess I will just take his assessment and go on "living". I don't want to get "bad news" from my doctor, but I want to be sure we are not missing something. I'd like to not have everything dumped as anxiety and start a new antidepressant. That was the outcome of the visit. I wonder if Zoloft really will help to alleviate pain, dizziness, insomnia, anxiety etc. I'm scared to death of the side effects.

So, any thoughts??

[Jules A]

I'd like to not have everything dumped as anxiety and start a new antidepressant. That was the outcome of the visit. I wonder if Zoloft really will help to alleviate pain, dizziness, insomnia, anxiety etc. I'm scared to death of the side effects.

So, any thoughts??

Certainly not all the symptoms you listed are likely to be only the result of anxiety however severe anxiety can make anything seem worse. I believe there can be an association of increased pain if you consider how tense the entire body is when anxiety is high which might lead to muscle fatigue/pain.

Zoloft is FDA approved to treat anxiety and is approved for children as young as 6 years old which leads me to believe it is considered fairly safe for most people especially since it can be prescribed to the wee ones.

Unfortunately for people with severe anxiety very often every new twinge results in additional anxiety over every single possible side effect which can negate any positive results or lead to abrupt discontinuation by the patient.

If your doctor recommended it and it sounds like you respect him, I'd consider taking the advice you paid for.

[Carolinemf]

Hi Marti,
Yeah been hearing for about fifteen years "stable , doing well" yet feel more lousy as time goes by.
Especially the last 4 years or so.
Its a bit over a year since i raised my cog issues etc and the anxiety it causes me with neuro and thats when he looked at atrophy rather than lesion load.
The majority of opinion about progression is still based on lesions but more and more docs are realising that there are other things (types of damage) that also contribute to increase in symptoms.
It can help to lessen anxiety with a pill but it may also help to discuss these other possibilities.
Are you a candidate for trying Ocrevus? To slow progression.
All the best
Caroline.

[marti]

Hi Marti,
Yeah been hearing for about fifteen years "stable , doing well" yet feel more lousy as time goes by.
Especially the last 4 years or so.
Its a bit over a year since i raised my cog issues etc and the anxiety it causes me with neuro and thats when he looked at atrophy rather than lesion load.
The majority of opinion about progression is still based on lesions but more and more docs are realising that there are other things (types of damage) that also contribute to increase in symptoms.
It can help to lessen anxiety with a pill but it may also help to discuss these other possibilities.
Are you a candidate for trying Ocrevus? To slow progression.
All the best
Caroline.

Thanks so much Caroline. This doctor and the one before him both believe it is not a good idea for me to try any new DMD's. After years of Copaxone, I started to have strange side effects and both doctors felt it was not doing much good anymore. And, since I seem to be stable at this stage and age (66) it was not recommended. I am going to try to Zoloft tonight and see where this takes me. I don't think there is anything worse than anxiety! Hope you are seeing some results.

[loopey]

Stable?

My MS specialist says that I am stable every visit. I have been seeing him for 4 years now. When I first saw him I didn't need a cane; I do now. I didn't have bowel issues; I do now. On and on with new or worse symptoms. I don't want bad news but it is very frustrating for him to say "all is well" when I feel so bad all the time now.

My MRI's have not shown any new lesions either so I asked him if I was SPMS now and he said "not yet". I repeat, I don't want bad news but I am so much worse off now it is frustrating for him to ignore it.

[Jules A]

I repeat, I don't want bad news but I am so much worse off now it is frustrating for him to ignore it.

If DMDs aren't working other than possibly giving you the SPMS label if appropriate and treating symptoms as they arise is there much more they can do?

I hate this disease.

[pennstater]

Anxiety can be brutal. Saw the ambulance pull up for a 52 year old neighbor. She thought was heart attack (she is in good shape, swims, minor health issues), turns out, anxiety/panic attack. She has a lot of pain, gets dizzy too...she is not MS, but frustrated by docs telling her just anxiety. So MS or non-MS, seems people run into itfrequently. And once the Dr. Says that, seems to follow for everything.

The one thing my neuro does on a visit I like, is he asks how I am feeling that day, scale of 1-10. And then asks on average, how would I rate most days. Funny, sometimes I indicate better, but neuro exam little worse and others, rate my day poor, but exam is little better. Go figure...

I do hope the Zoloft helps some. I know at this point, you just want relief, no matter the cause.

[marti]

If DMDs aren't working other than possibly giving you the SPMS label if appropriate and treating symptoms as they arise is there much more they can do?

I hate this disease.

At one time the previous neuro did label me as SPMS. Then she must have forgotten that she did that and all my reports came back as RRMS. This one lists me as having RRMS. I don't really care. I just feel terrible every day and don't need the confusion of a doctor telling me I will have a long, happy life and my MS is stable and let's just treat anxiety!

[pennstater]

I can understand your frustrations. I think part of the problem is that doctors aren't sure what to treat until anxiety is under control. They aren't sure which cause is contributing to which symptoms. I do hope your treatment for anxiety is successful. If so, it may be easier to get your doctor to treat remaining symptoms. I hope things get better.

[Tawanda]

I think I am so used to acting like everything is OK outside the neuro's office, that I am dragging my fake smile and positivity into the office as well. I am PPMS and there really is nothing much my doctor can do for me but mirror my false positivity. We are both complete phonies. This is a horrible disease I am sporting and we both know it.