Symptoms

I experienced a lot of symptoms in a very short time during my first MS exacerbation. This list is personal, fairly exhaustive, and not at all indicative of everyone’s experience with an exacerbation.

–  approx. early April 2011: feeling of heat/numbness in left front abdomen

–  April 11, 2011: early morning starts with uncontrollable under-the-skin itching of right hand fingers and wrist. Subsides within an hour, but by 9 a.m. I have numbness of top skin layer on left side, collarbone down, front and back; no hot/cold sensitivity. Genital/anal area also went numb on left side over the next few days.

–  April 13, 2011: went to CentraCare, was told a.) neurology consult needed, possible MS/nerve function disorder, and b.) blood tests needed, possible thyroid disorder/vitamin deficiency/Lyme disease, etc. Was told to go to E.R. if muscle weakness or pain began.

–  April 16, 2011: muscle weakness and tingling began in lower left leg and upper right arm. Numbness of skin continues. Begin to notice slight difficulty pushing bowel movement. Do not go to E.R. as I have neurologist appointment on Monday anyway. At this point I realize it’s likely MS based on my previous knowledge.

–  April 18, 2011: appointment with neurologist. First told “it’s in my head” because I told her it was ONLY on left side ‘exactly’; then she admits it’s likely MS. Did variety of tests including skin sensation test. Referred for MRI.

–  Early morning April 19 (around 2:30 a.m.): awakened with painful spasm of right arm from past shoulder blade down to fingertips. Subsides within 2 hours, but afterward muscle weakness of right arm increases.

–  April 19, 2011: blood drawn for ordered tests.

–  During this week, tingling moves up and down left leg, primarily knee-down. A spot of nerve pain that feels like a pulled muscle sits in my lower left groin as of April 25th.

–  April 21, 2011: MRI. Within one hour of leaving radiologist, Dr. B (initial neurologist) calls and informs me the written report shows positive for MS. Am told I am to start on methylprednisolone (SoluMedrol) “immediately.” Try to bowl that evening; find it nearly impossible due to weakness of right arm (upper and lower).  (On this day I was also told that all blood work looked normal.) On this day or the next, right side of skin from breast down goes numb. Feels different than left side, however; I do have sharp sensitivity and hot/cold sensitivity—it almost feels as though it’s the second layer of skin where the numbness is.

–  April 22: pins-and-needles tingling began in right hand, rapidly followed by extreme weakness. I would describe the feeling as the nerves having been cut in my outside palm; there is so little function in the last 3 fingers of that hand. Am also starting to notice irritation/sensitivity of urethra/feeling of having to urinate often, incomplete urination. No difficulty urinating however.

–  April 23: IV infusion of methylprednisolone begins. By this time the tingling has completely subsided in lower left leg and weakness on left side is greatly reduced. Spot of pain remains in groin. Right arm/hand no change. No change in bilateral skin numbness. Right foot seemed to start to drag at first, but that subsided quickly.

–  April 24: second IV infusion. All other symptoms the same.

–  April 25: third IV infusion, 2nd neurologist visit. Having some mild constipation. Dr. B prescribes oral prednisone for 20 days due to the spreading of the numbness.

–  April 26 and 27: fourth and fifth IV infusion. Knee pain and swelling begins due to the meds. Nighttime urination continues as well as extreme hunger and water retention/weight gain in face and around abdomen. All MS symptoms except right hand gradually subside.

–  April 28: begin tapering-off dose of oral prednisone. Bowled; arm strength a little better but hand still no good.

–  April 29: drove route @ work, knee pain was extreme but subsided after work. Other MS symptoms OK.

–  Week of May 1: had lab work (CBC, BMP and urinalysis; all normal) and visual evoked potential (also normal). May 4 had 3rd appt with Dr. B; seemed like good remission progress except for hand and trunk numbness which persist. Prescribed Rebif.

–  As of May 8, still not much improvement in right hand. Cramping pain is gone, but stiffness and loss of function remain. Trunk numbness seems to be remitting. Left leg, arm and hand still have abnormal reaction to cold sensation. Still feel “pulled-muscle” sensation in left groin at times. Right arm weaker than normal.

–  As of May 15, right hand has gotten much better but is still not normal. Left hand feels a bit tingly and “off.” Function still normal. Feel weaker than normal in all 4 limbs but it does not impede normal daily function/activities. All skin on left side feels odd sensation when hot, cold, splashed with water, pressed with foreign objects, etc. Constipation and urinary issues continue on a small scale.

–  May 16: “buzzing” feeling in the middle of my body when I look toward the floor and also intermittently in the crook of my left arm. Very odd.

–  May 18: buzz is gone from arm but remains in midsection upon looking down. Right hand continues to improve.

–  May 20 or 21: weakness in both thigh muscles

–  May 23: first physical therapy and first Rebif injection.

–  May 25: second physical therapy and second Rebif injection.

–  As of May 29: the buzz has a name: Lhermitte’s sign. It is apparently due to the cervical lesion. It remains. Hand is much better but not 100% where it was. Urinary and bowel symptoms are significantly improved. Rebif injections going well; no site reactions and very few if any flu-like symptoms.

Symptoms of first-ever relapse, beginning on March 2, 2015

– March 2: I feel a little “off.”

– March 3-5: “off” feeling continues, I begin to suspect relapse

– March 5: I ask my boss to please be relieved of work because I am scared. My speech is slurry and I’m off-balance. I am afraid to drive the truck because I feel dizzy and my reaction time is slow. I am relieved of duty.

– March 6: calll neurologist

– March 9: receive callback from neurologist’s office, I am to start SoluMedrol infusion after routine lab work

– March 9: I get said lab work completed. The next day, script for SoluMedrol is sent to my nurse.

– March 10: I feel better

– March 11: I feel worse. Very fatigued, am starting to get a cold.

– March 12: first SoluMedrol infusion

– March 13: second SoluMedrol infusion. Most symptoms feel better except I sill drop things and my tongue is still twisted up.

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