Could I now be SPMS??

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Could I now be SPMS??

Postby shy1234 » Fri Jan 19, 2007 7:13 pm

Hi everyone :) I have had MS for 13 years, so I am not new to the disease.

However, I am concerned that ever since my last relapse this past April, I have not been the same. Mosty it was my leg/foot was affected (had to get AFO) and that did come back.

However, I did develope daily tremors, spasms, pain, fatigue issues that remain to this day.

I cannot do much without getting exhausted. Like today, I did the dishes, a little bit of laundry and I was done!

I am so used to being very "go, go, go, and I am just not anymore at all. I ciuld care less if I even leave my house. Whatever I do gets me so tired and weak do fast.

BUT, could this be ANY indication of progression to SPMS? I am just not sure. Thanks for any input!
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Postby agate » Fri Jan 19, 2007 7:38 pm

Hi shy1234, and I'd like to say WELCOME even though I'm new here myself.

The line between RRMS and SPMS is a vague one, it seems to me. It does sound to me as if you might have SPMS now, but I don't have any medical training.

I have SPMS, and that's how things are for me. Heat will bring on a flock of symptoms, an infection or injury will usually do the same, and I always tire more easily if I'm overheated or have an infection.

I also tire easily after just a little physical effort.

SPMS is only a label, really. I don't worry about it much.
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Postby shy1234 » Fri Jan 19, 2007 7:47 pm

Oh, and do lesions play a role in deciding if you are SPMS?

Not sure if matters, but last year I considered myself about a 3 on the Kurtze scale, now a 5.5 to 6
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Postby shy1234 » Fri Jan 19, 2007 7:56 pm

Thanks Agate. Don't I know you from Braintalk or Healthboards? I think I may have found this site because of you :)

I appreciate your kindness, trying not to get me concerned. My gut is telling me I am now SPMS, but lilke you said, it is just a label.

But, things have changed a lot in my life this year, and I have been trying to get used to having other people do so much for me. Except, I thought it was going to end, like every other time, ti the next time that is./ NOW, it is a bit disheartnening to think I may ALWAYS be like "this"..
And by "this" I mean, just always tired, opt out of going out to functions lunch, etc.. just because I know it will run me down, hurt my back, etc..

The thought of having to, once again stay home tomorrow with my kids whle dh is at work, and not take them anywhere again. Just hang around the house. I guess that is what most kids do anyway, but ....

Sorry to ramble...
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Postby becca » Sat Jan 20, 2007 8:17 am

progression is the hardest part of this shit. a one time disability would be much easier to handle, at this stage it's just constant.
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Postby agate » Sat Jan 20, 2007 3:43 pm

shy1234, I don't recognize your user name from any other board, but I've been on the BrainTalk MS board for nearly 6 years now. I don't know about Healthboards.

I wouldn't have been the one who referred you to this board--I just joined it the other day myself!

You asked if lesions play a part in determining if you're SPMS. I don't think they do. A person can have many MS lesions showing up on an MRI and be bothered very little by symptoms, or even have no symptoms.

If you're still having clear-cut relapses, you're probably still in the RRMS phase, though there is a progressive relapsing form that is more rare.

It doesn't sound as if you are having relapses, though....

As for staying home with the kids, I did a lot of staying home with my kids when they were little. They liked to work jigsaw puzzles, and I helped them with those in my spare time. There was always so much housework, cooking, and laundry to do that I never had a dull moment.

I made doll clothes for my daughter's dolls. I knitted a few ponchos. If you're naturally a more active type, you'd find it harder to be at home a lot, of course.

We also went to the public library often and brought home armloads of library books, which I read to them.

I colored in their coloring books and played with their paper dolls and their action figures. You can be a child again for a while if you have kids.
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Re: Could I now be SPMS??

Postby Melody » Sun Jan 21, 2007 2:16 pm

shy1234 wrote:
BUT, could this be ANY indication of progression to SPMS? I am just not sure. Thanks for any input!



NO NO NO don't go there. John was told PPMS by Dr. O'Connor from ST Mikes in Toronto. Wrong he is not. The heat intolerance can be corrected just add vitamin D3 2000-4000iu by the way ask your Doctor as I'm not one. Also add turmeric at least a TBS per day to foods. Also please remember omega 3 and eat cold water fish at least 3-5 times per week. Add wild salmon fish oil pills to the mix at 3000mg per day. Make sure to refrigerate they become rancid easy. Look at the bottom of some of the stuff John takes and of course check with your Doctor although just to note ours has a negative outlook for MS so really doesn't sanction anything other than the GIVE UP THEORY. Get tested for allergies and intolerances. Eat a low sat fat low GI diet. These are opinions but I believe they work. Also forgot NO SMOKING it's a toxin,NO ASPARTAME it's a toxin, NO BURNING THE CANDLE AT BOTH ENDS you need rest. EXERCISE it keeps your muscle tone and don't stress. DON'T Say this is impossible as I know it is not as we are doing it and it is working. Take control and remember knowledge is POWER
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Re: Could I now be SPMS??

Postby CureOrBust » Mon Jan 22, 2007 12:16 am

Melody wrote:The heat intolerance can be corrected just add vitamin D3 2000-4000iu ...

Is that from personal experience, or have you read it somewhere?

I personally dont think I have a problem with heat intolerance, maybe this explains why.
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Postby Melody » Mon Jan 22, 2007 6:36 am

From experience. Between the fish oil and the vitamin d3 John is able to go outside and not live like a bat in the summer. Prior to those changes he only went out at night in the summer or early morning. It was very restrictive for us as a family. Within 2 months of starting the above in spring of 2005 he has never had a problem with heat since. It has so improved his life. He also figures it is what cleared up his eczema as well as restless leg. Now it also is the time that I took John to the allergist and removed all foods that he reacts to as well as aspartame,caffeine and such. We changed our life style dramatically(cut down toxins) as soon as he was given a DX. It has so improved John he PRETENDS he no longer has MS. Robbie he still gets his beer(I know yeast builder but he needs to live tooooo) but keep in mind I do pay particular attention to the condition of gut flora so he does eat his yogurt with a good dose of probiotics and we also use sauerkraut to keep the stomach working well. John used to have leaky gut so I assume allot of his problems with allergies stemmed from that condition. It's so far removed from his health now it's sometimes hard to remember back. Here is something I wrote awhile back that might help you understand the changes we made. His eye has improved since this was written.


Ok well might as well go with John's vitamins as well.(per day)

Vitamin A 2000iu
Beta Carotine 3000iu
Vitamin E 400iu (d-alpha tocopherol)
Vitamin C 1090 mg
Folic Acid 1mg
B1 2.25 mg
B2 3.2 mg
Niacinamide 90mcg
B6 55 mg
B12 70mg
Vitamin D3 2300iu-2700iu
Biotine 95 mcg
pantothenic acid 60 mg
Thiamine 50 mg
Riboflavin 50 mg
Flax Seed Oil caps 2000 mg
Calcium 333 mg Thinking of dropping this one
magnesium 166 mg
zinc 2.4 mg
Lipitor 10 mg At this time
Glucosamine 1500mg
Q10 60 mg

This was written in August 2005 it saves me time from typing it out each time. I've amended a few times.

John was a Martial Arts instructor in 1998 when it all began He was 34 years old and in fantastic health. He was grappling on the evening of Feb 8 1998 with one of our students. It was a exerting workout. He came home and pretty much went to bed. He awoke the next morning as usual but noticed a problem with his eyes right away. He was blind in one eye. Within the next few days they told him it was optic neuritis. They offered us a steroid treatment which we turned down as being health buffs we know them(our opinion) to do more harm than good in the long run. They mentioned MS as a possible over the next few months but when they ran the first MRI there was only a slight chance he even had a lesion. He had another MRI in 6 months which confirmed 1 lesion but it was inconclusive if it was MS. They thought it had possible been from over exerting while exercising.
Over the next few years he suffered cramping in his hands as well as legs but nothing our GP seemed worried about. He has had restless leg syndrome for years as well as allergies,fatigue and eczema. On Aug 17 2005 we were in Niagara Falls with our grandson at Marineland when he thought he was bitten by something. He had a sharp burning pain in his chest and a numbness down his left side. We headed to the emergency department and they thought he had had a heart attack. We had a cardiologist that just persisted as he was so unsure but all the signs were there but no damage to the heart. Needless to say he put him on Lipitor 40mg in Aug 2004. We are not worried about liver damage at that dose it is normally associated with 80mg. We also get his blood work done every 3 months to be safe. I forgot to mention that in 2003 he was treated on a 3 week course of antibiotic as his stomach was depleted in good bacteria caused by a duodenum bleed as well as hemorrhoids. Not sure if it is relevant. In Jan 2005 we were given the results of his last MRI and he had his original lesion on the brain as well as 4 knew ones on his spine. It was then he was told it was MS. As soon as we heard the word I started scanning the net for all possible treatments. I found we needed to determine allergies as well as intolerances so we started there.These were the problem areas for John. We eliminated all soy product, all corn and corn by products all ground nuts, all tree nuts, all squash family all in the same family as peaches all melon family. Then had to pay an additional $120(which we got 80% back from insurance) to run a specific test to check for gluten intolerance. Hubby is not intolerant to that so I've not removed grains from his diet although I choose rye toast as to keep wheat down just incase. Pasta we use a rice pasta instead just as a precaution. As to dairy hubby has 1/4 cup of cottage cheese 1% everyday as it is needed to digest ground flax. That adds 7grams of protein to his daily allowance of 20grams(hard to digest proteins). He also has 1 cup of 1% milk which adds 8 proteins. We are now up to 15 of what I consider (hard to digest proteins). Now we keep red meat down to one serving a week no processed lunch meats at all. Chicken once or twice a week. Seafood twice a week and cold water fish 3-5 times per week. The bottom line is see an allergist as each diet is so different. We eat pineapple fresh as canned the bromelain is missing. Bromelain is a digestive enzyme so very important to assure your food is not hitting your system until it is fully digested. Some people take digestive enzymes but I'd rather go natural if possible. We also add 1 1/2 tsp per person of ground turmeric to our foods daily it is an anti-inflammatory. Flaxseed ground fresh and kept in the freezer so as not to go rancid we add 2TBS per day. Just grind it in the blender the seeds are not as good whole as they can't be digested properly and the oil is unstable. Also omega 3 also is an anti-inflammatory. Now we went to St. Mikes and John saw Dr. O'Connor who is running the vitamin D3 trials so he was put on between 2000-4000iu of vitamin D3 daily. In the summer he takes 2300iu per day and in the winter we boost it up. Keep saturated fats at a minimum and here is a good site to teach you what is in food. www.fitday.com just use what they offer for free it is plenty. John is on Lipitor as well as the vitamin D3 and Copaxone. Hubby has so improved that if you saw him you would never guess he even has it. He still has the optic neuritis but it has been improving slightly. The lameness lasted just short of a year and totally disappeared as of June or July this summer. He no longer has eczema as of this summer although he has had that all his life. He also had no spring allergies again the first time ever. This was pre copaxone as we started that on July 4 2005. We started flax in April 2005 and Turmeric in Feb 2005. He also had restless leg all of his leg and that disappeared in late June again before Copaxone. I'm a great believer in letting your body heal itself and hope this helps. We also gave up smoking as well as aspartame and caffeine and loads of other known toxins. Hope this helps. :D
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby gibbledygook » Mon Jan 22, 2007 9:47 am

Melody - your're a marvel!! 8)
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby Fern » Wed Feb 28, 2007 2:25 pm

Forgive my ignorance, i am new here, but what's SPMS?

I am familiar with relapsing remitting (RRMS) and primary progressive (PPMS) but cant' figure out what's the SP?
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SPMS

Postby lyndacarol » Wed Feb 28, 2007 6:25 pm

Fern, I'll leave it to smarter people here to explain SPMS in detail. Briefly, my multiple sclerosis began as RRMS (relapsing-remitting)--I had attacks or exacerbations that would come and then go (leaving me pretty much back to normal). Gradually, symptoms would not leave 100%. Now I am in the SPMS (secondary progressive) stage in which symptoms are constantly with me.

I was diagnosed with RRMS in September 1992.
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Re: SPMS

Postby shy1234 » Thu Mar 01, 2007 6:43 am

lyndacarol wrote:Fern, I'll leave it to smarter people here to explain SPMS in detail. Briefly, my multiple sclerosis began as RRMS (relapsing-remitting)--I had attacks or exacerbations that would come and then go (leaving me pretty much back to normal). Gradually, symptoms would not leave 100%. Now I am in the SPMS (secondary progressive) stage in which symptoms are constantly with me.

I was diagnosed with RRMS in September 1992.


Wow, our stories seem to be quite similair! I was dx'ed in 1993, and feel as tho I may be SPMS - it is basically what Lynd described - You relapse, but less and less abilities come back, leaving you more "disabled" with each relapse. I am not sure if you decline "without" relapses tho. Lynd, do you know?
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Postby Lyon » Thu Mar 01, 2007 4:15 pm

This page from the NMSS explains the different stages of disease progression http://www.nationalmssociety.org/pdf/so ... siveMS.pdf

I can't tell how old this info is but it really doesn't matter because this type of thing has been pretty static for a long time.

Bob
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Description and course of SPMS

Postby lyndacarol » Thu Mar 01, 2007 6:43 pm

Shy1234, Lyon's posting describes the course of SPMS perfectly, I think. It even mentions the situation of gradual declining without definite relapses, which has been my experience.
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