Kindly help me know if this is PPMS?

Primary progressive MS
1

Hi ,

I am 28 M and need some help regarding MS
I have been reading and listening to people who have PPMS.
And i am confused if i have it.
My case being:
I was perfectly good until the year 2003. And 2004 sleeping arms and pins and needles started, with both arms and legs. And there was some 10 percent numb feeling all over my body. And i was termed lazy for sleeping for many hours in my hostel.And also i had 10 percent loss of concentration.

And everything was progressing slowly i can say, but no disabling symptoms at all. Right now i am still active, but cognitive skills decreased by 35 percent in these 10 years, legs are bit weak, even arms. No vision problems at all.
Sensation of feeling and taste reduced by 30 percent. Reading speed and thinking speed decreased by 35 percent.
I have no problems walking, but i still feel legs are weak.

2011 i was diagonized with a very low level of Vitamin D and thin bones. Now my Vit D is in normal range.
2012 my b12 was tested by neuro doc to be at a lower range of 200. So i was given a 1 year,montly shots treatment. Pins and needles improved.

2013 i complained the less sensation of touch, so was ordered an Mri. Nothing significant was found except a small lesion in brain. Spine was clear.
2014: 1 year later the brain mri too turned normal. No lesion was found.
Used some medicine

But the symptoms i have to deal with still are, confusion, difficulty remembering, difficulty finishing tasks in time. difficulty organizing or planning. I mean slowness in any activity. And also impairment in perception of touch, i still can feel 60 percent, there is no complete numbness anywhere on my body.

All these years, i was also dealing with an irritable bowel and psoriasis.

Apart from these i donot have any disabling symptoms that i heard on the videos of PPMS patients.

Do you think that mine is a case of PPMS? My doubt is, whether the disease can be so mild and can span across so many years?10 years?

One thing i would like to add is that during these 10 years, it is myself who experienced this slow decline. None of my friends or family complained that i have shown some salient symptoms which they find to worry about.
In 2013 my boss asked if i had problems with time of completion once.

Kindly help me to understand it better.

2

Hi Shuresh and welcome to the board.

I’m sorry to say that’s it’s impossible for any of us to say if it is PPMS or not. The fact that you have no lesions on brain or spine would indicate it is not. Without lesions showing it is virtually impossible for a neurologist to diagnose MS.

Yes MS can be so mild and span across many years. In fact most of us, once diagnosed, realise that we have had symptoms for many years. But again, without any lesions showing it is difficult.

You could ask your neurologist for a lumbar puncture. That is another way that can help diagnose MS, but usually they will want to see lesions on the MRI before they are willing to do a lumbar puncture.

Psoriasis is a very difficult condition and I think it is possible that it’s that causing all of your symptoms… along with IBS. If I remember rightly these are both auto immune conditions (like MS) and could well be causing the cognitive difficulties.

I suggest you go back to your GP and talk again about your symptoms. Some of your symptoms certainly could be caused by Vitamin B12 deficiency and I suggest you get tested again.

Sorry that I can’t give you any more reassurance but only a neurologist can tell you if it’s MS and there are many, many conditions with symptoms similar to MS.

Take care and hope you get some answers soon,

Pat xx

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Hello Suresh,

The whole PPMS thing is a very complex matter and can be extremely varied between individual cases. Whilst I had bouts of numbness and tingling, it was the physical deterioration I noticed first. In particular it was struggling to walk distances and tripping over which finally made me approach my GP. As Pat says, it’s the lesions from the MRI which point diagnosis towards PPMS and it was the CSF (lumbar puncture) which confirmed it. Either way I would be inclined to go back to the GP with any specific changes in symptoms.

Hope you can get a clearer indication soon. Best wishes, Steve

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Hi Suresh

Welcome to the forum. I agree with the others in that without lesions on the MRI, an ms diagnosis would not be given, indeed it is a very complex illness.

Asking the neuro for a lumbar puncture would be a good idea, although they may be reluctant in the absence of lesions. In the meantime I would definitely ask your gp to repeat the bloods, as a deficiency could cause the symptoms you mention.

Hope you get some clarity soon.

Pam x

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5

Your symptoms strike me as low B12 pernicious aneamia. On their help site many folk have daily shots of methylocobablin (more easily absorded) than the one you get from the doctor. Many on their site find they need extra than what the doctor prescibes. Buy the book LOW B12 an epidemic and you will see that people are undertreated. Your symtoms nearly match pernicious anemia to the “T”. Just forget about PPMS that is probably just adding to your stress.

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