Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Hello, I'm new here. I have had back issues for the past three years, I have degenerative disc disease and two bulging discs, one lumbar and one thoracic. I have had nerve pain for the past three yrs in my lower left leg and left foot, but for the last 4 months ive had constant deep muscle pain on the top of both legs and off and on sunburn like pain on legs and arms, sometimes hands, then I had severe tongue pain that lasted one week, and on and off tingling in my fingers. I had a brain scan and it showed 4 lesions, I'm going in Thursday for a MRI with contrast. This doctor said it looked like MS. My question is.....if I have had all these symptoms and tons more off and on for the past 4 months, but the nerve pain for 3 yrs, does that mean it may be PPMS? My symptoms never do away, they just change. I also have had the MS hug three times in my life, but this was years ago. Any thoughts?
Sorry to hear is ms, but glad you are being validated. Your dr is the one that can say, but there are some meds issues and insurance, so I believe it's easier if they say RR.
keep us posted, Alma
I'm not an expert on this, but I will share with you what I understand from my research and reading on here.
Some people have RRMS, but their symptoms never go away. They may change a little, get stronger/weaker and new ones may show up, but that doesn't necessarly mean PPMS.
I think the main thing with PPMS is that it is usually a slow, steady decline in mobility and weakness.
I'm sure others are better versed in this than I am and hopefully they will chime in, but I've wondered the same thing you are thinking now and have done my share of research on it.
(((hugs)))
Lisa
A few more pieces of info are that when you go through a relapse in RRMS anti-inflammatory meds ie steroids reduce some (not all) the symptoms (sx). This does not happen in PPMS. In RRMS CRAB+ Tysabri,etc main meds "seem" help slow progression of the disease where in PPMS not even the meds seem to slow it down. It is as Lisa said a steady decline.
Best wishes to you in working with your doctor to help find things that work for you,
EP
PS It might be worth discussing a few diagnostic tests to at least rule out contributing factors.
I would suggest getting two tests from your doctors because MS involves immune process and inflammation. Since 70-80% of immunity is found in the gut and GI stimulates a good chunk of the inflammation in the body doing testing on the GI seems warranted.
1.) Life Extension Food Safety Allergy test done. Most docs ONLY look at IgE severe allergy inducing Antibody.
The above tests looks at Severe IgE AND chronic IgG antibodies for 95 foods. If I can find a test that looks at 3 antibodies for 60 foods I'll dump this test and upgrade but so far it is the best I have found.
( IF you find a better one please post the test/lab in a reply to this post)
2.) MetaMetrix Labs (in GA) has the best GI 2100 Function Test I have found available for the general public. It is silver standard in GI testing.
Gold standard testing , to me a non-medical professional, would be a full DNA analysis of the bacteria in the GI. However, I have only found this available in clinical research facilities that are not open to the general public. *** IF ANYONE finds a lab doing full DNA bacterial workup on the GI, that is open to the public, PLEASE Post and send to my email.
If you have too many bad bacteria/deficient in good bacteria you will up-regulate inflammation and immune response which you do NOT want in an autoimmune disease. You can call the lab and ask for docs in your area that script this test then cross reference with your insurance to see which one will help cover the costs.
If you are interested in this type of testing. Then read the below reply, PRINT OFF the research and bring it to your appointment. So you can discuss your options with a medical professional.
Research Info http://www.dailystrength.org/groups/loved-ones-who-support-someone-with-ms/discussions/messages/14447218