I wanted to share my story and see if anyone here thinks this may be MS. My doctor believes that it is, but we have had a really hard time with neurologists, they seem to just want to brush me off. I am seeing a specialist on the 1st of February, but was just wanting some opinions from people who have MS or are going through the same problems as I am. I am so frustrated, and I believe it is MS.
So here we go:
Prior to these episodes I was an extremely active person. I was very good at my job as an accountant. I participated in sports and went the gym religiously. When the first episode happened I felt like I was hit by a truck. I was floored and in bed for 2 weeks. Once I started feeling better I was back to normal. Over the years I have bounced back very well but in 2004 the episodes became so bad that I was unable to work. I could not concentrate at work; I was messing up numbers, which never happened before. I could not focus and was so tired that I had to keep calling in sick, so I finally quit staying home. This was also the first year that I began to have tremors. In 2006 I felt better so I went back to work and worked until 2007 when I had another episode. I have not worked since. My episodes get worse when they do happen and now I am not bouncing back like I used to. I am getting depressed because there is no diagnosis and my anxiety gets really bad when the episodes start because I know I am going to feel horrible and up to this point, no one has helped, nor have they treated symptoms. I am suffering and no one is helping. This is my timeline:
2000: This episode happened during the summer and was a Mild episode that included loss of concentration, brain fog, muscle weakness and pain and severe fatigue. Saw my family doctor who diagnosed Fibromyalgia and began treating me with Fibroplex, Celexa, Vioxx and Zanaflex
2002: In march of this year I began having the same symptoms as before, they came on quickly. I went back into my doctor and he continued the medications listed previously. This episode lasted about 2 weeks and I bounced back fairly quickly.
2003: October--- same symptoms listed previously, also came on quickly. Saw my doctor again and voiced my concerns that this may be MS as we had a family member (1st cousin) that has MS. He was concerned as well. I could not get an MRI at this point as I had no insurance. Stopped taking meds previously listed as they were not helping.
February- recently married, now had insurance, this episode worse than before : severe fatigue, tremors( first time), dizziness, difficulty concentrating, difficulty swallowing, gait disturbance, zoning out, difficulty talking(forgetting words) and bowel problems. New doctor concerned might be MS, wanted to rule out Lupus first. Put in referral to Rheumatologist.
April- Having another episode, symptoms same as listed above, just as severe. Doctor sent me to Rheumatologist. Rheumatologist diagnosed polyarthralgia, fatigue and Raynauds. ANA was positive 1:640 with a speckled pattern, all other blood work negative.
October- having another episode, doctor noted bilateral shaking in legs, loss of balance, tremors throughout body and failed Romberg test: Also having severe fatigue and loss of concentration and difficulty swallowing. Put in a referral to Neurology.
November – saw Neurologist. Would not listen to my symptoms and said they thought it was Poss Intermittent Claudication with Diminished Circulation Ultrasounds = Normal , no evidence of plaque formation nor stenosis Did not seem concerned about other symptoms as they had cleared up
2005: Moved to CA and now seeing new doctors. December - Severe Fatigue, muscle pain, tremors throught entire body, difficulty concentrating, swallowing difficulty, gait disturbance, and memory loss (forgetting everything) new doctors wanted to rule out Lupus again. Put in request for bloodwork. ANA 1:80 all others normal. Doctors did no follow up.
2007: August – same type of symptoms listed prior, went in to see new doctors (happens a lot with military docs) They ordered Ordered Neck CT: Impression: Normal Soft Tissue Neck Symptoms went away..no follow up
August – same symptoms as listed prior, more severe this time, episode came on really fast. Went in to see doctor, this one also new as we had moved, This episode lasted almost a month, the longest episode I have had. Doctor did not want to put in a neuro referral because he thought it was bursitis.
October- Another episode just as bad as previous one, was able to get a new doctor. Doctor saw how bad the tremors were and put in a referral for Neurology and Rheumatology. This episode has new symptoms: tingling in legs, burning in legs, and squeezing sensation in legs and chest, also total numbness in right leg that would last several hours. Issues talking included not remembering words and stuttering and loss of balance caused me to fall several time. Doctor ordered forearm crutches.
November: Had MRI Impression: 3mm focus of chronic white matter ischemic change within the right periatrial white matter tracts Neurologist stated these are normal aging spots. My doctor did not agree and sent me to another Neurologist I also do not have diabetes, high blood pressure or any other issues that would cause an "ischemic" change, so the radiologist that wrote the report did a horrible job.
December: saw new neurologist he said spots are from Migraines, but I do not suffer from migraines, told him that, he told me he does not have any answers and that my symptoms do not match MS symptoms. I told him there is a cousin with MS and there may be other MS in family, he still told me that my symptoms are not MS symptoms, I asked about the tremor, he said it is essential tremor, I told him I only have tremors during flare, he still called it essential tremor, I decided to leave.
Saw Rheumatologist: he ran blood work ANA 1:80 all other tests negative. Ruled out Connective Tissue Disease.
2010: saw my doctor told him what Neurologist/Rheumatologist said. He put in referral for MS specialist and Mayo Clinic. My episodes are closer together now and I am not 100% after them now…still feeling fatigue and leg weakness. Any insight would be greatly appreciated, i am going out of my mind!!