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Not MS!!!

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    Not MS!!!

    So, I saw a neurologist at an MS center in Pittsburgh and he says not MS. Yay!!! I was left with more questions than answers though. He didn't do full exam and I had to undress to my undies??? He says my brain and spinal lesions are abnormal and my exam was abnormal. I had a page and a half of symptoms and he didn't want to see it. I was 20 minutes late due to detours from all the flooding on our 4 hour journey and he wasn't happy. I tried calling to let them know but was on hold for over 10 minutes!!

    After I explained about flooding, he started easing up and joking a bit. He ordered blood work for blood clot disorders?? He wrote on copy that based on lesionsnot in MS pattern and spinal fluid was fine, it is not MS. He wrote most like Ischemic. My exam showed ataxia (could barely walk), hyper reflexes, and weakness. He said for Disability purposes I should see aConitive specialist who can prove I cannot work any job. I am just entirely confused now. Any thoughts on where I should go or do now?? I might just give up on finding answers. So exhausting and I don't think i have any extra energy for more. 😥

    If I remember correctly, we have similar symptoms. I am not diagnosed either. However, my MS specialist has not totally ruled out MS for me. I have one lesion on my brain and spinal fluid is normal.

    My next step is to go see a cardiologist because I have issues with getting lightheaded almost to the point of passing out every time I stand up. My heart rate and blood pressure run low. So the MS specialist wants to see if those symptoms are connected to my neurological symptoms/abnormalities.

    Don't give up though! I know it's exhausting both mentally and physically. If you can't get a diagnosis maybe at least you can find some kind of medication/therapy that can help you feel better.


      Hi mathgirl24,

      It's weird because he said my exam was abnormal and brain and spinal lesions were abnormal. I've only had 2 MRI's, 6 months apart and he said they were unchanged. I have lesions in the frontal lobe bilaterally as well as parietal lobe. I didn't know I had lesions on my spine. He only performed like 5 tests and he wants me to see a spine specialist and a neuropsychologist. My walking is getting so bad I have to consider a cane for short walks or a wheelchair for trips to zoos and such. I hope your testing goes well, and I hope these tests of ours helps our doctors figure this out.
      My Neurosurgeon told me that my disc fusion is not the cause of all these symptoms but I will seek out a second opinion just in case. These Docs seem to think we WANT MS, but all I want is to be well. I feel like I'm letting my kids down by not doing things with them. They are so young and I worry that's how they will remember their childhood. Mommy always napping, can barely walk, can't pick them up or play much with them. I pray we find relief from this pain soon. Take care and praying for you as well. HUGS


        Originally posted by WiltingRose View Post
        It's weird because he said my exam was abnormal and brain and spinal lesions were abnormal. I've only had 2 MRI's, 6 months apart and he said they were unchanged. I have lesions in the frontal lobe bilaterally as well as parietal lobe. I didn't know I had lesions on my spine. He only performed like 5 tests and he wants me to see a spine specialist and a neuropsychologist. My walking is getting so bad I have to consider a cane for short walks or a wheelchair for trips to zoos and such.
        Hello WiltingRose -

        My suggestion (FWIW) is get a second opinion from another neurologist. I have lesions on my brain and spine (cervical spine region). It took years for my diagnosis (without going into all the boring details) -- My neurologist is over at St. Margaret's in Aspinwall - Dr. Silverman. He's not a MS specialist but can handle MS cases. I never bothered with the Pitt MS center in Oakland because the wait to get an appointment was ridiculous.

        I don't know what part of Pittsburgh you're in, but if it's not too far, you might want to give him a try? In his "certification" it shows neurology and psychiatry - I guess that makes him neuropsychiatrist ?? You said your other doctor mentioned about seeing one.


          Hi VikingKitty,

          Actually I saw Dr. Silverman before this one, lol. He didn't want to see me again after my LP was normal. The receptionist told me there was nothing more he could do!! I might try Hershey or Philadelphia next. Not sure at the moment. It's so very frustrating!! I only had a 2 month wait for Dr. Heyman. At my appointment he was a little arrogant by telling me there is usually a 1 year wait! I actually live in Central Pa so the trip to Pittsburgh was over 4 hours due to morning traffic downtown and flood detours. So Sorry you are diagnosed and it took so long. Right now I am using a cane to walk, my leg is so bad. I hope someone helps me soon. I seem to be deteriorating fast. Thanks for your suggestions, I appreciate you trying to help.


            I have small children too. I have 5 year old twins and a 1 year old. I feel bad at times too when I tell them that mommy is tired and needs to rest. But we need to rest so we can give them some of our best even if it's not as much as we would like. I just tell them that mommy is sick and I don't feel well. They seem to understand that.

            I hate when doctors just give up after the tests don't confirm what they think is wrong. I had a neurologist do that to me. But I finally have a good doctor and she is committed to finding out what is wrong with me. Although she says it may take time but she is going to look in to rarer diseases other than MS because of the way my symptoms are. They just don't really fit in to the typical way MS presents.

            I hope you can find a doctor that will take you seriously and at the very least try to get you some symptom relief while they work on finding a diagnosis for you. I have found that sometimes you have to demand care. Sad, I know. But like you said, you will never get this time back and you need to get care so you can be there for your kids. I agree with getting a second opinion. Keep us updated!


              Hi WiltingRose,

              Dr. Heyman is excellent and is well respected nationally. He diagnosed me with NMO in 2005 and I have been with him ever since. His practice is very large, and yes it is often a year to a year and a half wait. His patients come from all over and not just the Pittsburgh area. All of my appointments are scheduled a year ahead of time. I can assure you that he is not in the least arrogant, just extremely busy as he is in great demand. He has gone above and beyond for me (as he does for all of his patients) and makes himself accessible in the event of an emergency. If there's an answer to be found, he'll find it.

              Grace (NMO+ since 2005)


                Hi Grace53a,

                I have no doubt he is an excellent Dr. I read his reviews, and specifically requested him. I am only stating how my visit went. I did keep him waiting (unavoidably) 20 minutes, and he was friendly but I could tell he was not happy. I am not doubting his diagnosis either, just frustrated that I still have no answers. I am happy to hear he has gone above and beyond for you(and others). He stated no follow- up needed on my paperwork, so I will seek another Doctor closer to home. Take care.


                  Hi WiltingRose.

                  Originally posted by WiltingRose View Post
                  I didn't know I had lesions on my spine.
                  This isn't true. In your Thread:
        😥 You stated this:

                  I forgot to mention that there is a possible lesion on my cervical spine near where I had ACDF surgery (disc fusion) last year.
                  In MS, lesions are on the spinal cord not the spine (vertebrae). I can only assume your Neurologist referred you back to a spine specialist because the lesion found was not on the spinal cord, but as I said this is only an assumption on my part.

                  You have been diagnosed with Fibromyalgia. Have you researched Fibro symptoms? Have you considered Fibro as a very possible cause for your symptoms? Information about Fibromyalgia:


                  I would suggest you follow your Neurologists recommendation to see a Spine Specialist and Cognitive Specialist.

                  Best wishes
                  Diagnosed 1984
                  “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic


                    Hi Snoopy,

                    Sorry, I wrote it wrong, It says Brain and Spinal Cord lesions. The Neurologist wants me to see a Spine Specialist to see if compression that was fixed could still be compressing the spinal cord and causing some of my symptoms. My exam was abnormal and one of the reasons was hyper reflexes. He wrote that it could be caused by spine issue or brain.
                    I see a Rheumatologist for Fibromyalgia, but she says although I do have the sensitive areas on my body to be diagnosed with Fibromyalgia, she believes the many other symptoms could be MS. My predicament is that I have three doctors saying it looks like classic MS and three saying not MS.
                    Since this last Neurologist has a great reputation in treating MS, and he believes it is not MS, I will believe him. To me it's not about a name, I just want relief! Also, all the tests for blood clot disorders came back negative. YAY! Right now I am in PT for Ataxia(?) walking issues. The pain in my left leg is excruciating!! Have an appointment with Neuropsychologist in 2 weeks and need another MRI of Cervical spine. Will keep updating when I have more news. Thanks for reading.