SPMS - How are we doing???

[Seasha]

Just wanted to know how everyone w/ SPMS is coping these days? Are your sx progressing any more than they have? Are you frustrated or at least relieved that you no longer have flare ups? Or do you still? Are you on any kind of meds that help you? Have you found things that help you adapt? Are you still working?

Lots of questions here!! I just need to talk with others that have SPMS. I've progressed to SP and don't have a chance to speak with others who have, except here on MSW.

I've been on SSDI since spring. The lack of stress from working has helped, but I realize that life has changed for me. I consider myself to be a positive person and my motto is accept and adapt, but thoughts of loneliness still arise. I am still taking Copaxone, but don't know why....I really don't want to take anything else. I am on Paxil for anxiety/depression which helps.

I'd love to hear your stories.... your friendships... Thanks!

[Lori4030]

Hi, Seasha. In answer to your questions:

(1) I still have flares, and lately they've been ganging up on me.

(2) About meds, I take 4 mg. LDN (low dose naltrexone) before bedtime, and I believe it helps. Unfortunately, when I am not able to get it when I am in the hospital because hospital pharmacies don't know anything about it. I've suffered setbacks every time I'm not allowed to take LDN at bedtime.

(3) Like you, I'm on SSDI. In my case, it's been for a couple of years. My vision and mobility are both lousy, and I'm getting a power chair delivered in a few days. To be honest, it scares me becuz I can just see myself colliding with walls, furniture, etc.

[kellygrn]

Walls!

I have been in my apartment for 6 years. Manager has asked to repaint but I have not let them. Finally she came in & saw all the door frames messed up. She has ordered rubber door frames. LOL!!!

MS-wise, I have had it 50+ years. It is slowly taking everything away. But I still get up everyday & do as much as possible.

KK

[newme]

I just finished 4 months of PT

It REALLLYYY helped. Now I can walk up and down stairs (only one flight) using a hand rail and my cane. I can get up from the floor by pulling up on something but don't need my hubby to lug me up.

My symptoms are still there. My feet are numb. My vision is blurry. I have a bit of spasticity. But I think I am doing okay.

I am on SSDI and Medicare (thank goodness). The fight for that was really rough on me. I went down hill fast during that ordeal.

I need to remember to do my exercises and relax. I also need to find a positive hobby to get excited about.

My trip from RRMS dx to SPMS was quick. In hind site, we think I have had MS over 35 years but I have only been diagnosed for 5 years.

I would love to hear everyone's story.

[carolinesnona]

Hi Seasha!, I've been DX for 8yrs ( but dr. saies I've had it much longer). I've slid into SPMS in the last year.I used to travel a lot,I have a son in Chicago & a son in DC. This past Sept My family & I went on an extended trip to Las Vagas, I've never really recovered from that trip. I am just weaker & weaker.
Than 3 weeks ago my DD & G'kids & I were at a reasturant for dinner,as I was transfering to the car I fell I broke my tail bone. Now I have to sit on a special pillow I it hurts.
I had 2 trips planned for Feb. & March,I've cancelled both of them,I just want to sleep allday.
I go to my neuro in a few weeks & I'll see what he saies ( he is the most wonderful Dr.) But when he's mad at me he calls my DD & yells at her, never me. I live w/ my DD & her family, she'll come in my room after my neuro calls her, & has that look & saies" Mom!! Now this is what you have to do". I just nod & go on reading LOL.
I haven't had any flairs in about a year, but I now have no use of my right leg,I can't lift it at all.
The best thing I have is an electric recliner,I have a hand control that reclines the chair & than lifts me to a full standing to transfer.
I also have a walk in shower & bathchair.
I also have an scooter, it's great as we live only 4 blocks from our church I use my scooter onSundays & my G'kids ride thier bikes.
But my biggest Blessing is my wonderful family,they are why I want to get up everyday.
God Bless Nona Judy

[TayRiver]

My SPMS

I have had MS for a long long time.. well I was DX in the 80's I have not had any flairs for over 18 months but like others I just keep getting worse as time goes on.

I do IV Steroids every 2 weeks this helps me stay in full time employment. I would love to stop working but I do not qualify for SSDI. I have set myself a goal for continuing to work, I hope to keep going for another 5 years..

I had some Cognitive evaluation done 3 months ago and I was shocked to read the results.. I did not realise just how impared I have become.

I still drive to and from work but my doctors are now questioning that as they say my speed of thought is not so good, but we will see..

I use a wheelchair when I am outside and at work but in the house I walk around using the walls and furnature to help. My fatige is very bad and even with the steroids and Provigl I am always exhasted. I have little or no feeling in my feet and my balance is not so good anymore.

I have a very good MS Specialist in Boston and the staff at the MS Center are so good.

[Christie]

TayRiver

I have had MS for a long long time.. well I was DX in the 80's I have not had any flairs for over 18 months but like others I just keep getting worse as time goes on.

I do IV Steroids every 2 weeks this helps me stay in full time employment. I would love to stop working but I do not qualify for SSDI. I have set myself a goal for continuing to work, I hope to keep going for another 5 years..

I had some Cognitive evaluation done 3 months ago and I was shocked to read the results.. I did not realise just how impared I have become.

I still drive to and from work but my doctors are now questioning that as they say my speed of thought is not so good, but we will see..

I use a wheelchair when I am outside and at work but in the house I walk around using the walls and furnature to help. My fatige is very bad and even with the steroids and Provigl I am always exhasted. I have little or no feeling in my feet and my balance is not so good anymore.

I have a very good MS Specialist in Boston and the staff at the MS Center are so good.

Hi TayRiver....Just curious what type of work you are able to do and do??Hope you don't mind me asking. I want to work but my fatigue and spasticity cause me a great deal of problems. Thank you for your time.

[MSGina]

Hi everyone.

I have been SPMS for 7 years.

Last year '09 I took the hardest hits so far.

Due to loss of all myelin at my brain stem and most of the nerve fibers, I have that whole brain blood barrier going on and my heart and respiratory tract are now involved.

My heart is pumping too much blood and my heart rate is too fast.
At this point my heart is still healthy, no signs of CHF or disease and my arteries are good but the cardiologist doesn't know how long my heart can be under this kind of stress without causing other problems.

I am having serious bronchial, laryngeal and esophogeal spasms now which are affecting my swallowing more and breathing.

All this due to where on/in the brain stem the damage is done.

I spent 6 days in the hospital before Thanksgiving. Came home for 6 days and then went back in for 11.

I should have a reserved parking space at the hospital now lol.

I was pretty freaked out for a while over all this news but, not to sound cliche... it could be worse and I'm greatful for what it's not and what all of this is teaching me.

I'm thinking about writing a book... 'I Know There's a Heaven Because I've Been Through Hell'.

Happy New Year =)

[srwpjw]

I have had MS for a long long time.. well I was DX in the 80's I have not had any flairs for over 18 months but like others I just keep getting worse as time goes on.

I do IV Steroids every 2 weeks this helps me stay in full time employment. I would love to stop working but I do not qualify for SSDI. I have set myself a goal for continuing to work, I hope to keep going for another 5 years..

I had some Cognitive evaluation done 3 months ago and I was shocked to read the results.. I did not realise just how impared I have become.

I still drive to and from work but my doctors are now questioning that as they say my speed of thought is not so good, but we will see..

I use a wheelchair when I am outside and at work but in the house I walk around using the walls and furniture to help. My fatigue is very bad and even with the steroids and Provigl I am always exhasted. I have little or no feeling in my feet and my balance is not so good anymore.

I have a very good MS Specialist in Boston and the staff at the MS Center are so good.

Hi Ty River
You say you do IV steroids every 2 weeks, I do them every 2 months, wondering how many you do and the dosage. I do 1 gram for 3 days every 2 months and it helps, but it does not last., and like you I work but by the end of the 1st month, I am struggling to make it through the day, I too take provigil, helps, but not enough.

[Seasha]

Wow - thanks all for replying to my OP. I guess I;m trying to understand if having the dx of SPMS will eventually lead to more disability of what we have already physically and cognitively lost? It's one Q I haven't asked my neuro - maybe b/c I'm afraid to know the answer?

Having taken early retirement and now on SSDI, I fantasied that my condition would somewhat improve without the stress of work. So far, I'm feeling better emotionally, but the physical stuff hasn't improved at all. I just don't want it to get any worse than it has. I use a cane and for longer distances a wheelchair.

My family has been very supportive-thankfully! I was always such a independent person - a "tough cookie" so to speak... do it on my own and not have to depend so much on others. Now my family is overindulgent and treats me like I'm sort of soft and vulnerable. It's different, you know? I;m still trying to sort out this altered me!

Thanks again for replying and listening. I wish you all the best and good health in this new year and like I mentioned in another unrelated post - "Here's to a new year of taking the DIS out of ABILITY" - I need to practice what I preach

p.s. MSGina - hope things are improving for you and let us know when your book gets published

[jazzgirl]

My standard answer: I'm hangin' in.

I try not to think about the "what ifs". I usually find ways to keep myself from getting hurt, but I do fall even WITH my rollator in tow. I'm irritated because as a dancer I always knew where to find my "center", but I don't have one anymore.

I'm not on any of the disease-modifying meds anymore because my damage is permanent. Until they figure out how to regenerate a neuron (the ONLY cell in the human body that does not regenerate...thus, the disability), I'm here in MS-land.

I still manage to enjoy myself thanks to my family and friends!

[Lori4030]

... I'm thinking about writing a book... 'I Know There's a Heaven Because I've Been Through Hell'....

Great title! I hope you'll do it!

I too am going pretty good as well. I was DX with SPMS in 2008. They seam to think I have had MS for about 17 years. Just over the last 2 years I have started to go down hill, that is what brought the DX now. I take 1000mg IVSM for 3 days every 2 months. This only lasts for about 30 days and gives me much help with my balance and walking. I also take 100 mg of baclofin per day as well as 200mg of provigil. DMD I take is copaxon. I just started back at PT and find it to be helping as well. Good luck to all and just keep looking forward to tomorrow.

[Doodlebug]

Hi--I've had SP for about 5 yrs. I went on SSDI about a yr. ago. Prior to that I shifted from job to job to support my issues.

I decided to quit work last year because of the difficulty driving in the snow & walking in winter. I said enough was enough--I can't risk getting hurt.

Have I gotten worse? Probably because I'm not as active as I used to be--that's my fault. I've gotten my butt back on the treadmill to prepare for the MS walk in April.

I've been a lot of the meds & am never completely satisfied. Most recently Tysabri but I'm quitting that because it give me a UTI like clockwork every month. It's expensive & I'm not convinced the side effects (PML, UTI & $$) are worth it to continue.

I'm looking at Copaxone & LDN. I don't want to go back to Rebif because I hate the flu/chills & depressuion sx. I'm finally in a good place.

I take Baclofen for spasms, methlyn for fatigue, Bactrim daily to ward off UTI & Pristiq to ward off the bad moods.

Good luck with your quest. I often times feel like I'm in the rowboat by myself also.

[TayRiver]

Hi Ty River
You say you do IV steroids every 2 weeks, I do them every 2 months, wondering how many you do and the dosage. I do 1 gram for 3 days every 2 months and it helps, but it does not last., and like you I work but by the end of the 1st month, I am struggling to make it through the day, I too take provigil, helps, but not enough.

Hi I do IV Steroids every 2 weeks, 500mg each time. I was doing them once every 4 weeks 1000mg but I would crash half way through the month, so my MS specialist sugested we try 500mg every two weeks. I have been doing that for the last year. I take the Provigil 200mg twice a day, once when I get up at 6am and then again at 12pm, it helps but I still get very tired.

I work full time for a investment management company, so I crunch numbers all day... I find that it now takes me alot longer to complete my work than it did a year ago. I hope to be able to keep working for another 5 years..