krisp 16/04/15
Last reply 3 years ago
Stem cell therapy PPMS

What is everyone’s opinion of this?

I look like Im going to be diagnosed with PPMS and fast progression at that.

I have researched everything and the only thing with an ounce of chance is stem cell therapy. With active inflammation it has a 60-70% chance of stopping disease, without inflammation sometimes less than 50% chance.

What would you do? Remember this is also very early in the disease course also which gives the best chance to have any sort of recovery or stabilisation. I have gone from no issues to arm and leg issues within 4 months and cannot sit by any longer

The chance is there to do something next month providing all the mris etc show ok

What would yu do?

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krissie2012
3 years ago

If it were me, I’d be going to see my neurologist armed with as much information as I could find on the stem cell therapy. I would then work with him/her towards a plan of action. Making this decision without all the facts could be very dangerous.


stumbler
3 years ago

@krisp , the stem cell arena does look encouraging, but all these things seem to take an inordinate amount of time, unless you can get involved in some Clinical Trials. They’ll get there eventually.

But, can I recommend a note of caution. I believe that you are still presently undiagnosed and have been on a marathon quest for knowledge.

It’s not wise to self-diagnose or give yourself a prognosis. The recommended way forward is “prepare for the worst and hope for the best”. 😉


krisp
3 years ago

Hi thanks guys

I have done a lot of research and I tend to be the kind of person that needs to be in control or at least feel I’m doing everything I can to stop what’s going on.

@stumbler I know what your saying regarding prognosis etc but to go from no issues to bilateral spasticity and stiffnes from knees up to bladder area, slight bladder issues and arm problems in 4 months does not bode well, unless it miraculously plateaus off.
I have been in touch with russia and Israel regarding hsct and had the relevant facts about success rates etc, I am trying to fight this with everything I can. If it turns out to be Ppms rather than guzzling tonnes of biotin if the trials good, then stem cell therapy is the only option


stumbler
3 years ago

@krisp , I know exactly where you’re coming from and understand your thought process.

MS is a notoriously difficult condition to diagnose. It’s usually a process of elimination of the probable suspects, before you start looking at the possible options.

For example, Coeliacs disease can present a similar set of symptoms to MS.

The brain itself works in funny and unexplained ways. I just wouldn’t want you to fall victim to a “self-fulfilling prophecy”.

I realise you like to be in control, but you really need to consider lightening up and allow yourself time for your body to address what’s going on and, even, recover from it.

Any problem involving the Central Nervous System (CNS) doesn’t react well to continual worry/stress. The brain emits chemicals at times like this that have a detrimental effect on our…………..CNS.

So, try and give yourself some time off from this labour of love. 😉


katjay
3 years ago

Hi Krisp. I don’t know anything about that therapy . But I really wouldn’t assume you have ppms , seriously .

Kat x


katjay
3 years ago

P.s I have the same symptoms as you , but I have progressed in 5 weeks . I’m not diagnosing myself yet .


krisp
3 years ago

Hi katjay
Mine have come on and progressed over months that’s what leaning me to believe it’s not a relapse, what are your symptoms so far?


tracyd
3 years ago

@krisp

Have heart, I’ve gone through a similar dramatic and sudden group of relapses that don’t seem to be remitting. My Neurologist assures me it’s that I’m going through a very aggressive time of it but it absolutely isn’t Progressive MS

It is the reason I’m going straight for the strongest treatment there is though. Fight fire with fire and all that

You have me on message if you need to talk xx


katjay
3 years ago

Hi krisp
Symptoms :numbness, vertigo , pins & needles , bladder problems , burning , itching , walking funny , spastic leg & twitching


Anonymous
3 years ago

Krisp you are worrying so much at the moment. I understand why but take comfort your mri’s and Neuro exams are normal. Has your Neuro actually mentioned PPMS? What are his views?


Anonymous
3 years ago

Re HSCT,

There is a good Facebook page with many members. From what I’ve read the medical profession does not feel people with PPMS are responders as it works best in RRMS with clear evidence of inflammation. That said there are people from the group who believe it does.

Regardless you would need a formal diagnosis of MS to be considered.


krisp
3 years ago

Thanks @sandwich
No no ones mentioned ppms at all it may even be prms but I’m trying to cover all based
It’s getting worse all the time that’s the issue
I’ve had the literature off russia it’s a 60% chance of working


Anonymous
3 years ago

@krisp Your anxiety sounds extremely high and while I get it (totally) you need to be kind to yourself, take a deep breath and consider the facts as they are. At the moment you have symptoms but no diagnosis and no abnormal results. You are rushing to worse case scenario with no evidence to base it on. I understand your fear, I’ve been there and its all-consuming but you need to take a breath.

What are your neuro’s views? Have you shared your concerns and importantly does he share yours? Have you been offered anything to manage / alleviate your current symptoms? This needs to be your starting point and focus right now.


krisp
3 years ago

Hi sandwich
Thanks agin for the reply
And yes your not wrong regarding the anxiety, I’ve actually been prescribed something for it today, I keep visioning the worse scenario and that I won’t live long etc with all this

My neuro is not as concerned as me as even though the symptoms hurt etc they are not showing up currently on a Neuro exam, even though the spaaticity hurts it’s not showing up

It’s odd


Anonymous
3 years ago

I’m glad you’re getting help with your anxiety. Hang in there 🙂


krisp
3 years ago

I was wondering in progressive types
Do sumptoms ever go away completely?
The lhermittes I had had pretty much completely gone away? Plus I had a numb toe and finger for about a week that’s completely disappeared along with numb bottom of foot?
Is this normal?


cameron
3 years ago

Hi @krisp. I so hope that you can take comfort from other people’s experiences but you MUST now address your current emotional state. If you don’t (and it turns out you do have MS), you may be making it worse not only now but for the long term. I know, because it’s my story: I’d had some worrying but come-and-go stuff for four months that had all but gone when I got my first appointment with a neuro. He was awful (long story) and I came home really worried, sick at heart and depressed. Forty-eight hours later the side of my face went numb, I felt as though I had raging flu, my leg ceased to work and I couldn’t ‘unfreeze’ one side of my body. In other words, the neuro had brought on a relapse. The leg never recovered. I was referred to a good hospital and an excellent neuro: by this time I was in bits. Suicidal thoughts, the lot. Got the dx and was told I’d be put on treatment. But here’s the interesting bit: the consultant said he was more worried about my mental state than the MS itself and wouldn’t let me start the meds till I’d had counselling etc. Now why was he so insistent? Because of the impact on the MS. He knew that until I was in a better place mentally, the MS could rage through the body. Now, as has been said, you don’t have a dx so you are in the worst place because you have no control over what’s happening. Also, as has been said, it may be something than than MS. I was told there were 17 other conditions that were more likely! Sadly not so in my case, but it’s something to hold onto. There’s only one sensible thing to do while you’re waiting: go to the GP and get meds to reduce/remove the anxiety. Then at least you’re giving your body the best chance to re-set itself. Do it now, please.


cameron
3 years ago

Sorry @krisp, I see you are actually taking meds now! Well done, rant over!! Once you’re calmer and getting normal sleep, you’ll hopefully begin to stabilise. I’d been told at my pre-dx consultation (this was with the good neuro) that they were going to put me on strong steroids to accelerate the healing process. Three weeks on, I was admitted to hospital for all the tests and I’d had a lot of good input from the neuro team – and I was told then that I didn’t need the steroids because they could see that healing had started. What had suddenly changed? Only that I was now in the hands of people I trusted.


krisp
3 years ago

Hi Cameron
Thankyou for your time it really means a lot
And I agree I completely with the stress thing, I had slight issues and then when I started reading ppms wtc they all came on at once! The busier I am the better i seem to be but nothing takes away the spasticity etc
But yeS, I hope starting the meds will slow it down a touch
I sometimes wish I’d never followed it all up, it may not have got to this

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