Will this thing ever slow down?

[inmoni5]

I have been dealing with my ms for almost a year and now I feel as though my life as I knew it is over.

My symptoms have been steadily increasing. My legs constantly are so tight and painful, my stamina for walking is diminishing, the muscle pain is horrible, my cog fog is just debilitating. Just last week I now have to self cath 4x a day. Everyday is a struggle.

I was denied for ssdi and now am appealing w an attorney. I just cant believe this is going so fast!

In January I am scheduled for my 4th mri this year. Nothing is slowing this down. Im scared and lonely and lost.

[hunterd]

mine didn`t slow down untill i started ty. i was exactly like you are till then. hope it stops for you.

[SNOOPY]

I am sorry this disease has been so difficult for you this past year

Sometimes the first year or two can be a struggle, sometimes the disease is simply more progressive for some than others

Your leg stiffness and pain sounds like spasticity. Is it possible Baclofen is either not working for you or the dosage is incorrect?

my stamina for walking is diminishing

Has Physical Therapy been tried? Sometimes PT can help with pain, spasticity and stamina. Sometimes nothing helps your ability to walk

[inmoni5]

I am currently on cymbalta for the pain and it does help. The baclofen worked for about the first week and now it does nothing.

I was in pt. They discharged me as there was nothing more they could do. I was rated a fall risk and still am.

I dont know what more can be done. I was on copaxone it didnt work. Now I am on ldn. With my next mri if it doesnt show any better they are going to try something more aggressive. We have talked about avonex as the next treatment. Ive heard that if one dmd doesnt work most likely another wont either?

[Ikoiko]

We have talked about avonex as the next treatment. Ive heard that if one dmd doesnt work most likely another wont either?

Well, that is certainly not true, so keep your hopes up!

[0485c10]

My first 2 years were rough. if you notice from below my signature thingy describes my med profile. at first i refused a med. Just like you i investigated ldn and thought that was the cure no one but internet savy people knew about--i was so niave--my doc refused to prescribe ldn---refused to treat me if i ignored his treatment advice. i found myself a homeopathic doc that did prescribe ldn, got much worse until the homeopathic doc refused to continue to see me and advised i go back to my previous neuro.

i did, i followed his advice and things stabilized out and i realized how foolish i had been to refuse treatment at first. I'm not saying,but....

[inmoni5]

See what I dont understand is that my last mri showed stable and yet I am still increasing in symptoms.Thats what I dont understand. I have been told by my docs that it looks as though Im rpms but who cares about the label. I just want it to level off.

[Tomjadg]

I'm in the same boat as you.
No change in the MRI's, but legs getting worse.

I know there is no cure, but it would be nice to stabalize after 18 months after Dx. There is never a good day.

[SNOOPY]

See what I dont understand is that my last mri showed stable and yet I am still increasing in symptoms.Thats what I dont understand.

Hi inmoni,

The MRI is a great diagnostic tool. However, in my opinion, the use of the MRI is flawed when tracking this disease.

Some will be doing fine and the MRI can show more or active lesions, others are not doing very good but the MRI has no changes (stable) or has even improved from the last one. There are some with MS who's MRI will match how they feel.

Unfortunately, progression can happen without any changes to the MRI A Neurologist should treat the patient, not the MRI.

[inmoni5]

My neuro is really good with treatiing the patient. I guess he just wants to watch the mri too? When I was first dxd he said my ms was very aggressive and that we need to watch it closely. Im 33 with 3 kids. Its so hard to comprehend how fast I am declining.

[Windwalker]

Hi inmoni5,

Sorry to hear the MS has been a bit relentless. I know how that is, went through a tough two year stretch where the MS was aggressive and debilitating symptoms came quickly. But then it did stabilize.

I think at your age and with 3 small kids...you should try other, more scientifically proven, drugs like the Avonex. I have heard that people commonly try 2-3 before finding something that works.

Also, these "tough stretches"... where the MS seems relentless, are often tied to periods where we still try to do everything we used to do...thereby doing way more than we should, which stresses out our body and minds.

Make sure you are not putting undo stress on yourself, worrying too much, etc.

Hope things stabilize soon.

[Thinkimjob]

It will slow down, eventually, probably. Windwalker is right, stress and worry don't help.

That said, my MS was quite nice (ha) for 10 years and only revealed its true nature about three years ago. I thought it would never stop.

Flare after flare, something exciting and new every day.
It has finally settled down or maybe I've got used to it.

The limp is not going away, the balance is not coming back, but at least I don't feel like I'm sick anymore.

Trying not to worry is not the same as giving up. It's finding a way to live.

All the best.

[0485c10]

When i looked back at my history and when i should have known--thats about 19 years, i noticed it never was about relapse & remissions - it was about periods of MS instability with periods of stability. in these periods of MS instabilty i had quite a few relapse, then it was stable, nothing for a while.

most of us get diagnosed within our own period of MS instability...it can be very stressful waiting for a period of ms stability to return.

i'm with windwalker, not sure you have explored all your options yet. if you think it is PRMS, the R part still has to be treated and slowed down. go to my home page to read the articles of alemtuzumab/campath/lemtrada which is in phase 3 trial and may slow it down more than anything else ever has.

your neuro, i'm thinking might not be the best for you, maybe the one you like but not the one that is best for you. i refused a med for 8 months tried ldn first--i felt so sorry for my doc straddling this line that its not so bad but wanting to treat it at the same time until he finally told me outright... you had better take this seriously this is serious.

your neuro is skipping the "its not so bad part" and he might not be so good for you, although you might feel comfortable with him? drunks like to drink with other drunks.

i was thinking of asking you--i read on something else you posted that you had been denied SSDI. Has this new classification of aggressive or advanced MS under compassionate allowance helped you with your appeal?

http://www.msworld.org/forum/showthread.php?t=116913

& reply #8 in this thread

http://www.msworld.org/forum/showthread.php?t=116935

[inmoni5]

I just started my appeal with an attorney literally just the other day I mailed in the paperwork. When I speak to my attorney I will be asking him about the new ssdi info.

My doc is not waiting too long to give ldn the benefit of the doubt. I dont know how he will respond if my mri comes back with negative results. He is trying to talk w me about other meds but I refused for now. Im not trying to be niave with this Im just extremely cautious about side effects and am a little ok...alot scared of doing shots again.

"Periods of instability". Thank you for that phrase, it makes sense.