End stage of SPMS?

[Jeannie216]

I am in what I consider to be the end stages of SPMS. I was diagnosed in 2005 with practically no symptoms and in the past 10 years I have gone downhill to the point that I can no longer stand for more than 30 seconds - let alone walk. I have no use of my left arm and left leg and about 20% use of my right leg. The last thing to go will be my right arm which is at present working at 50%. It is just like creeping paralysis. Any attempt at exercise in the past has left me unable to do anything for days. Brain and memory functions are at 100% and all organs are functioning normally. It is only my mobility that is affected. I can sit for about two hours and then I have to get back into bed. Anyone else reached this stage yet?

[Scott1]

Hi Jeannie,

I am sorry to hear things are not going well for you. Can you share with us more details about your history and symptoms? Was the diagnosis of late stage SPMS just yours or did a doctor confirm it?
It would helps us if we knew more about what medications or treatments you have tried.

Regards

[Jeannie216]

Hi,
Two neurologists dxed me in 2005. I had all the usual tests. MRI, VER, blood, etc. Spinal tap results showed 2 oligoclonal bands

They said I had probably had it for a very long time but had not displayed any significant symptoms, until my left hand felt mildly weak. They based that on an incident I had of temporary paralysis similar to polio 30 years ago.. We tried steroids with no effect. I was offered Rebif but declined because of side effects. Nothing much out there for SPMS 10 years ago. I tried low dose naltrexone but it did not help. That's pretty much it.

[lyndacarol]

Two neurologists dxed me in 2005. I had all the usual tests. MRI, VER, blood, etc. Spinal tap results showed 2 oligoclonal bands

They said I had probably had it for a very long time but had not displayed any significant symptoms, until my left hand felt mildly weak. They based that on an incident I had of temporary paralysis similar to polio 30 years ago.. We tried steroids with no effect. I was offered Rebif but declined because of side effects. Nothing much out there for SPMS 10 years ago. I tried low dose naltrexone but it did not help.

Welcome to ThisIsMS, Jeannie216.

Like Scott1, I am sorry to hear of your situation.

I wonder if you have copies of the 10-year-old blood test results. I wonder if nutrient testing was done, such as for vitamin B12, copper, iron, magnesium, and zinc. (Or if status of these nutrients has been determined recently) – nutrient deficiencies can have great impact on health. An MS diagnosis does NOT mean that you can't have other health issues as well. (And perhaps treating these issues could improve the situation)

Eating a healthy diet (even organic?) is always a good idea – it certainly cannot hurt.

You have found a community of new friends; I know we all wish we had the answer for you; once again, I feel helpless in the face of this terrible disease.

[Scott1]

Hi again,

So is it some time since you have seen a specialist? What do they suggest?

It sound like extreme fatigue might be your worst problem. Would that be right? There are a few ideas we can try but it would help if we understood what medications you do use.

Regards

[Jeannie216]

My main problem is mobility. I do not take any medications. I don't relapse and remit, it is just a steady decline. Neuro was hoping it would be slow. I am not certain if mine is slow or fast as I have nothing to compare it to.

I eat healthy and in small amounts. I do take vitamins: magnesium, B12, Vit A, calcium, C, potassium. I have had blood tests and am not deficient in anything. In 10 years I've had one episode of shingles probably due to stress and an 8mm kidney stone, none of which is directly related to MS. No colds, flu, etc. There are days when I don't feel as good as others, but everyone experiences that. I don't get depressed and I stay upbeat.

[Scott1]

Hi,

You have me intrigued. What you say doesn't fit my idea of late stage SPMS. Do you want some ideas?

Regards

[NHE]

Hi,
Two neurologists dxed me in 2005. I had all the usual tests. MRI, VER, blood, etc. Spinal tap results showed 2 oligoclonal bands

They said I had probably had it for a very long time but had not displayed any significant symptoms, until my left hand felt mildly weak. They based that on an incident I had of temporary paralysis similar to polio 30 years ago.. We tried steroids with no effect. I was offered Rebif but declined because of side effects. Nothing much out there for SPMS 10 years ago. I tried low dose naltrexone but it did not help. That's pretty much it.

Have you looked into high dose biotin yet? It's a new treatment protocol being developed for progressive MS by the pharmaceutical company MedDay in France. You can read more about it on the biotin forum.

[Jeannie216]

Scott I am open to ideas. Thanks

[Scott1]

Hi,

I'm sure I wont be the only one to make suggestions.

From what you've said it sounds like you have accepted a diagnosis some time ago and your progression fits the prognosis but it hasn't been challenged.
The first thing is to see where you really are. You are obviously run down because you need to rest and your mobility is affected. The issue is why.
If I were you I would get a number of tests done. Get tested for the following infections- EBV, mycoplasmas, chlamydia Pn, Lyme, Bartonella, Babesia and any other tests you doctor thinks are applicable. Most of these can be treated but you don't need them mucking up your day.
To understand what impact possible infections are having on your metabolism get tested for deficiencies in your amino acid levels by using a fasting amino acid test. What you want to know is what you are deficient in compared to normal. In particular you should look at your nonessential amino acid levels. They are the ones you make not ingest. Any deficiency can be supplemented but some infections scavenge amino acids before you get to use them. Hence deal with any you discover.
Get a uric acid test done. You will probably have a very low reading suggesting something is awry with your metabolism of purines. This is a very good test to correlate with fatigue and possibly heat intolerance.
Get these done if you want to be objective. Otherwise lets assume you will be deficient in what I think you will find anyway.
Do get tested for the infections. If you show up EBV positive, even to an old infection then you need valacyclovir. EBV is a herpes virus so it stays resident and will result in prolific production of superoxide. Hopefully your doctor will help with this.
You are probably in an inflammatory state so you need to make lifestyle changes. In terms of diet think of a paleo/Terri Wahls type diet. No Gluten, dairy or Pulses. They all impact on the villi in your gut. Augment this by taking coenzyme Q10 in big doses (I take 750mg). Start at 150mg and increase it every second night till you find you are becoming more alert and stay on that dose. Probably stay on 600mg max for a time just to see how it goes. Take acetyl-L-carnitine as it will work synergistically with the Q10.
You are probably dealing with a leaky gut. Start drinking a glass of fresh carrot juice each day for at least a year. If you have too much your skin will go yellow but I doubt that will happen. Some people worry about Vit D. I don't as the Vitamin D receptor works in a complex another master receptor called RXR. Upregulate that first with 9-cis retinoic acid which you get from the carrot juice.
Deal with the inflammation. you have a choice of the blockbuster drugs or you could try Curcumin, N-acetyl-cysteine and herbal approaches suggested by Stephen Harrod Buhner.
That's a start. Hopefully we can rebuild some energy then we can look at the spasticity.
It has taken some time to get to this state so it will take time to correct

I don't think you are late stage but you are run down. Lets start somewhere. This will not be a total answer but you need to introduce things gradually to see what each step results in.
You can be objective or you can guess. There will always be a bit of both but the medical profession will work with you if tests prove the point with some of the tests I suggested.

Regards

[aplkwst1]

Curious on the status for you now?