Long story very short ..

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Long story very short ..

Postby SimplyWaiting » Thu Nov 14, 2013 8:31 am

I am a 43 yr old female who has been having "flare ups" since I was in my mid 30's and likely longer if i think back. Time elapsed and flare ups continued but symptoms would change/vary and affect new areas. Thinking pinched nerve had been to orthopedics and nothing notable. I had also gone to a neurologist where the NP was concerned over the neuro exam but the Neurologist(who didn't spend but 5 mins with me) said i had spine/facet arthirits and DDD. Over a period of time 2 Brain MRI's and blood work (auto-immune) and all was negative. We moved to another state of course created the need to start over to some degree. Prior to finding a primary doctor I had pain in my left shoulder with no injury (since that 2 + yrs ago it has spread over the left shoulder blade/spine). Went to an urgent care and they referred me to what is now my current doctor (who is wonderful) After a few visits and explaining what has been going on he referred me to a rheumatologist who in turn did all the blood work for auto-immune disorders and other than Vitamin D (which i knew was down) all came back normal but due to family history of rheumatoid arthritis and symptoms diagnosed me with Fibromyalgia, DDD, Seronegative R.Arthritis. Muscle relaxants, pain meds, and a few others things.. still not great but taking it as it comes. Then came a new set of symptoms- Tremors- Out of the blue my hands started to shake- it lasted about 2 days and slowly went away. Was frightening for me and for my family to see. I had a follow up appointment with my doctor in several weeks so I figured i would wait to go to tell him. Long story short I have had on and off episodes of tremors and about a week prior to my f/u I had an episode of where if i moved or turned my head there was an electrical shock (not painful) sensation that ran through me- this created the inability to move freely and lightheadedness. My balance was off. I made an appointment with my doc that day and he wanted me to have MRI of the Brain and Cervical neck area and referred me to a neurologist. My MRI's which were normal that past 2 times, This one came back with notable foci in the peri-ventricular area and another area (sorry left my report at the neuros lol) It said causes could include: Migraine headaches , demylinatiion disease or ischemic attacks which were unlikely due to my age and clinical correlation is recommended. My neurologist wanted me to do a sleep study (insurance denied) a bunch of blood work (to retest auto-immune) and a nerve conduction study (have on the 15th)to see if is the central nervous system or peripheral . Although I have a list of symptoms i won't bore you with all of them but they range from blurry vision, skin burns to the touch, numbness, weakness, tingling, spasms, fatigue, speech issues, balance issues, memory, pain etc. This is a very short synopsis of many years. I do realize that they fall into other categories and the MRI does not a confirmed diagnosis of MS but it also doesn't rule it out. My doc doesn't not feel that it is age related changes as it is more common to see in older patients... So although I am comfortable with my doctor(s) Is there anything you would suggest to speak about or a test to ask for. How many things were you diagnosed with before MS. How long did it take for your diagnosis? I do know that we are our best advocate.. so any thoughts/help would be appreciated.. Thank you for taking the time to read this.
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Re: Long story very short ..

Postby CaliReader » Thu Nov 14, 2013 1:20 pm

It sounds like your doctors are on top of this. The mri's of brain and spine are key to the diagnosis. They may also want a lumbar puncture.

Completing the diagnosis is not the same thing as treating the symptoms. You will want to talk with your doctor about what options are available, and what are the costs and benefits of treatment for each. Personally, I'm going light on the pain meds for example, because this is a lifetime disease and I want a clear head. On the other hand, I'm on a fairly aggressive disease modifying drug. I'm also doing everything I can to provide both mental and physical excercise as both have been shown to be helpful. Take your time and do your research. MS is incredibly complicated, but once you know you have it, you have time to assess your options.

Good luck.
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