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MS Diagnosis, Courses, and Stages

Is getting a 3rd opinion a good idea?

  • By dswihe

    I’ll try to be as short as possible. I’ve had symptoms of MS for many years (approx 10 yrs) with first MRI showing spots on my brain. I originally was referred to neurologist for headaches. So after having MRI he diagnosed me with migraines and put me on meds that did not help the headaches. I had been dealing with some other issues such as strange numbness mostly in toes, hands, arms at that point. Not long after first visit with neuro I became pregnant with my 4th child. I was in my 40’s and even though I’d just had my 3rd child 2 yrs before and felt pretty good (other than severe migraines w/auras) with this pregnancy I did not feel very good. My son was born and I found out 9 mo after he was born he has mild cerebral palsy due to stroke in utero. I went back to neurologist after his birth and had some abnormal blood work come back. He still just monitored me for migraines only. I was working and at this point had to drop down to part time at my job (3 days wk) and the other days I would sleep a lot. I was always fatigued and had brain fog constantly. Two years after having my son I was laid off my job and did not work at all for 1yr 1/2. The entire time all I did was rest. Eventually started feeling better. I started working part time and immediately noticed my feet/ toes hurt so bad again and even to the point that my toenails appeared to explode from pain. Then we moved into a new house. After the move I literally was laid up for approx 1 month. I hurt so bad all over from packing up and cleaning etc. Worked periodically for few mo at time after that. Once after starting very physical job one morn I couldn’t hardly move at all to get out of the bed. I felt as if my body was so heavy. I would get dizzy at work a lot. I would also fall up steps was as if my feet were just not there. I would have feeling of pins and needles in back of my neck/shoulders. Legs feel so heavy after exertion can barely lift them to walk. After each time working I’d have to take a few months to recover. So go back to neuro after very stressful year of having my brother, mother, and sister in that order all die in same year. I began to have double vision and what to me seemed like 3 D as what I looked at appeared to jump out at me. This went on daily for while. When I saw the neurologist it had been few yrs so he ordered another MRI. Again it showed spots on my brain and he said they had increased. He told me this time that he couldn’t rule out MS and/or TIA’s. Told me only way to be sure is do a spinal tap. At that time I was scared to do a spinal tap as I’d had one with firstborn child and it gave me terrible headache etc. So did not have it done. Went on and things kept getting worse especially with eyesight. During all this I was also seeing a Urologist because had constant symptoms of UTI with blood in urine and pain. There was never any infection though. That continued for many years before they did a test and it came up inconclusive but no tumors ect. I still to this day have same symptoms. I also have diverticulitis , IBS, Gerd. Feel like I’m missing something but not sure what. The swallowing issues got really bad too. Went to a gastro and he stretched my throat. It did not help much at all either. Still have that issue as well. I have painful spasms all over my body. My hip mostly on left side hurts horribly. Sometimes I have such hard time walking even. I have also been diagnosed with fibromyalgia. But my thing is not one dr looked at all these things and said hmmm…maybe with all these undiagnosed symptoms that they may all go together. I switched neurologists as the first one would not do a spinal tap when I went back to him and asked him to do it. The new neuro did do the spinal tap but said it came back normal. So she too just said she thinks it is the migraines only. Should I pursue this further as I’m thinking of going straight to a MS specialist as there is one in my are? When I look online I have every single symptom listed for MS. So just wanted some opinions. I hate suffering like this as not one of these drs is helping me. And to get any relief I have to go to pain clinic and they stick needles into my neck and it causes so much more pain for me. But they do give me Neurotin and pain meds to help or I’d not be getting up out of bed at all. I’ve had most these symptoms for over 20 yrs. I have suffered miserably for years while trying to work etc. Thanks in advance for advice.

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  • By Erin Rush Moderator

    Hi dswihe! I am sorry you have been dealing with these issue for so long! I generally say that if your gut is telling you something is wrong, you are most likely right. No one knows your body like you do. Swallowing issues like you metioned can be related to MS. If you feel it would be beneficial, or at the very least, offer you some peace-of–mind, then you may want to consider seeing the specialist. Many of our members have mentioned that it can sometimes take years to get a correct diagnosis. If you haven’t already, you may want to check out this information on the testing and diagnosis process for MS — https://multiplesclerosis.net/diagnosis/. Please don’t hesitate to keep advocating for yourself and your health! Keep us posted, if you would like. Thanks for reaching out and best of luck! Best, Erin, MultipleSclerosis.net Team Member.

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  • By Carol

    Hi, I was just making sure that you did go ahead and get a third opinion. Go through as many neurologist as it takes go give you answers and make you comfortable,

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