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Do I Have PPMS?
Here is My Question:
I am 28 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.
Here is what I am experiencing:
I was perfectly good until the year 2003. In 2004 I started feeling sleeping arms, pins and needles, lack of concentration and numbness started.
Everything progressed slowly. Right now I am still active, but my 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 my legs are weak.
In 2011 I was diagnosed with a very low level of Vitamin D and thin bones. Now my Vitamin D is in normal range. In 2012 my vitamin B12 was tested by a neurologist to be at a lower range of 200. So I was given a 1 year, monthly shot treatment. Pins and needles improved. I've had an MRI which was clear and my spine is clear as well.
However, the symptoms I still have are, confusion, difficulty remembering, difficulty finishing tasks in time. I'm slow doing any activity. I also have impairment in perception of touch, but I still can feel 60 percent. I also have an irritable bowel. Apart from these I do not 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?
Thank you for providing this fantastic description of your problems over the past 10 years. To summarize, your symptoms began in late adolescence with bilateral paresthesias in the upper and lower extremities, fatigue, loss of taste and problems with cognition that may have progressed over time and partially regressed after taking Vitamin B12 shots for a year. The evidence in support of a diagnosis of MS is lacking in your description (MRI normal or transiently abnormal). All of your symptoms are classic manifestations of vitamin B12 deficiency including the loss of taste. We would not necessary expect all of your symptoms to disappear with B12 supplementation especially after many years of being symptomatic.
I would suggest the following:
1. Talk to your doctors about what caused your B12 deficiency. This is important as some of your symptoms may be caused by associated deficiencies that have not been uncovered or treated yet; these additional deficiencies may include zinc and copper deficiency and folic acid deficiency. These may also cause similar symptoms.
2. Ask your doctors why they think you have multiple sclerosis. Your note does not mention the reason for this diagnosis.
3. You should still be taking oral vitamin B12 supplements; I would recommend using methylcobalamin, not the standard cyanocobalamin
4. You should make sure that both your vitamin B12 level and methylmalonic acid level are normal
Primary progressive MS would not present as you have described in your question. Primary progressive MS is also more common in older onset MS (over 40)
Good luck and let us know what you discover.
Rip Kinkel MD
PLEASE NOTE: The information/opinions on this site should be used as an information resource only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
Q:"I am entering my 8th year with PPMS. What is being done to help and are any comparisons to check with?"
A: Primary progressive MS (PPMS) poses many challenges, not only for the person with this type of MS, but also to the medical and research fields. Although there remain fewer treatments for people with progressive MS, there is a great deal of energy in the research field focused on improving the understanding and care of progressive MS.
In 2012 several organizations joined forces to begin an attack on progressive MS, as the International Progressive MS Collaborative. The MS societies of Canada, Italy, the Netherlands, the UK and the USA, and the Multiple Sclerosis International committed to move forward and became the International Progressive MS Alliance. In 2014, the Progressive MS Alliance developed policies and principles to govern their work, and created a funding mechanism specifically for research in progressive MS. For more information about their work, please see the link http://www.progressivemsalliance.org/. To find out more about the research they are funding, go to http://www.progressivemsalliance.org/research/research-projects-funded-by-the-alliance/
Please also see the entry on 9/19/14 to read a bit more about some other exciting research in people with PPMS... READ MORE
Deborah Backus, PT, PhD, FACRM
Director of Multiple Sclerosis Research
The Eula C. and Andrew C. Carlos MS Rehabilitation and Wellness Program at Shepherd Center
PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.