Is it or Isn't it?

By Laura13az Latest Activity June 23, 2015 at 12:05 am Views 1,035 Replies 2 Likes 2


How can you know for sure you have MS? I've been to three Neurologist. Two said yes, one said no. Several MRI'S all come back saying indicative of MS. I sure don't want to take MS medication with all of the scary side effects, not knowing for sure.
So what does a person do with no absolutely positive diagnosis (and with MS is there even such a thing?)? I've been to Mayo and he was the one who said he didn't think it was MS, yet the Radiologist said the MRI was indicative of MS? I find this so very frustrating and confusing.
I'm not even sure what kind of doctor to see to make sure I'm getting the best advice and treatment.
I have just about nil energy. I think that is one of my biggest complaints. I just came home from "vacation, ha!" because of that very thing. I didn't even feel up to spending time with anyone because I felt so lousy. Sometimes I just want to crawl into bed pull the covers over my head, not see or talk o anyone, but I know that's no good so I keep pushing and feel worse and worse. I hate being such a party pooper but I go anywhere and if I sit still for any length of time I'm fighting to keep my eyes open and my friends can't help but notice.
So what does a person treat when you aren't sure this is what you have?
So tired of being so tired!

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Replies (2 replies)

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  • jefff
    jefff July 5, 2015 at 6:06 am   

    Hi Laura,

    My name is Jeff Martella (jefff) and I'm also one of the CA's (Community Advocates) here to assist you as best I can…you should also note that I've had or have been diagnosed with MS since November 2001 and it was after I finally moved away from Chandler, AZ (3 year residence) in 1996 up to the Seattle, WA area (quite a difference in climate) where I got off my butt and went NEURO hunting for answers. I was in the Hotel Business, so my time over the past 30 years has seen a few moves to various climates (i.e., Las Vegas, Chandler/Phoenix, Seattle, San Diego, San Francisco, Texas and now Salt Lake City, UT…). I tell you this because I want you to know that I have struggled with "MS Like Symptoms" since the early 90's, but never did anything about it (it's a guy thing) until I started seeing various Doctor's in the mid 90's when my legs and arms were just going to sleep with painful numbness/tingling sensations that never left. I could go on, but maybe another time and at a different hour…still up @ 5am…URGHHHHHH!!!!!

    Enough of me; your situation while living in AZ will NOT improve if you partake of the Heat Index during the summer months because I suffered and suffered during those 4 months and loved the other 8 months. POINT - Utilize your A/C to the MAX if possible. Dress COOL at all times. Use Fans, they help circulate the air even if it's cool in your home. Find a Pool (preferably indoor, but not mandatory) whereby your body can exercise as well as "de-fatigue" if you know what I mean. Oh yeah, and don't forget your diet…stay away from "fatty-type" foods because they don't allow your body to breathe-in non-toxic air that is sometimes trapped/contained within our bloodstream after and during an exacerbation.

    Final note, but always listening - remember to check back in with us…WE ARE your support team and eager to help whenever possible. We not only possess an understanding of the disease, but we've been where you are today or yesterday or tomorrow!

    Take Care and stay COOL this summer, jefff

  • PenguinAngel56
    PenguinAngel56 July 4, 2015 at 3:30 pm   

    Just before I was diagnosed I had fallen and hurt my back and my neck I had a 3-4 lumbar fusion and a 4-5 cervical fusion. then I was still not able to get around on my own with out a walker or quad cane. So I went to a Neurologist and he did a brain MRI, it show lesions common in many different diseases. So then he said that he wanted to do a spinal tape and say that would be the final test to say yes or no to what it was . Well it was and is MS. I am taking meds as I should. I can still walk short distances with a walker and the rest of the time I am in an Electric Wheelchair or if I am going with my daughter and I'll need to walk a lot I take my non electric chair.I moved into an Assisted Living House because of Domestic Violence. I have my laundry done, my bed made and the help me in the shower. But I am thinking of getting an apartment, just not to sure. I am on Social Security Disability and SSI so the income is small. I can still get help a few times a week. and I would only pay 20 to 30 % of my income for rent and some of the places are made for wheelchair accessibly. I would still have to pay for the utilities, and cable,phone etc. I should be able to get food stamps. So I just have to think about it very carefully. Sorry for rambling on and on. But I hope that some of this helps. Good Luck