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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


hello...i've posted the following in other sections of the board (arthritis and fibromyalgia), but thought it appropriate for here as well...one thing i will add that may set the following apart from the others is i often experience numbness and tingling in my hands and feet (esp. when i first wake up from sleeping). in addition, i often have involuntary twitching of my extremities (arms and legs) at various times throughout the day, but moreso right before i go to sleep at night.

for about three months i have been through the ringer in terms of pain and uncertainty. i should preface this by saying for the better part of 15 years i've dealt with a mild sciatic-type pain from low left back down the left leg. it's never really hindered any physical activity until recently. it all started in late april not long after some recent jogging/training for a 5k run. granted, i'm not a regular runner, so when it got closer to the run date and i had significant low back and leg pain, i chalked it up to overuse injuries and saw my GP for a possible sciatica flare up. well, after lying me down on my back and lifting my legs (extended) and not feeling any nerve pain shoot through my leg, he ruled out sciatica. what alarmed him was my "incredible stiffness" in my hamstrings in both legs (could barely go up 45-degrees. i was apparently "the stiffest person he's ever met." so, he basically felt i was dealing with a stiff back and legs, and strained some muscles.

fast forward to now (about two months later). since then, i've developed chronic joint pain (mostly on my left side) in my hip, knee, ankle...as well as low back, ribcage, thoracic spine, shoulder and base of neck/between shoulder blades (along spine). the pain has manifested itself in so many unique ways throughout various points on my body, but the one consistent feeling i have is burning joint pain (this developed about 5-6 weeks ago). the mornings and evenings are the worst and some movement gives me relief, but too much sends me over the edge as well. so far, i've had x-rays of lumbar and thoracic spine and hips, as well as an MRI of LS spine and SI joints. all are clean. in addition, because i suspect AS or some other spondy, my rheumatologist also tested for hla-b27 (i'm negative).

this past wednesday i saw my rheumatologist for a follow-up visit. since the first visit the pain has changed dramatically. after preparing an extensive but very concise list of symptoms and questions. i focused on the few "chief complaints" starting with the widespread burning joint pain and morning/evening stiffness and pain. while going through my list of symptoms he ruled out one of my concerns, reiter's syndrome. i was worried about this because of the rather sudden onset of inflammation in my eyes since 5/25 (which was dx'd as allergic conjunctivitis by an ophthalmologist). he seemed pleased that i saw him.

based on my negative b27 test, normal ESR, C-reactive, etc., he seemed rather adamant that i am not dealing with AS...in his words, "i deal with 120 different illnesses and based on what i'm seeing and hearing from you regarding your symptoms, we can pretty much put that out of the picture." on one level it was reassuring, while on another i thought about how some people who are b27 negative and have low ESR, etc. and have AS. i didn't want to get into an argument with him over it. so i allowed and am allowing myself to feel good about his assessment.

at this point...he feels more certain i am dealing with fibromyalgia. largely based on the nature of my pain and where it's affecting me. i immediately thought to myself, "doesn't this affect women much more than men? something like 9 to 1?" i questioned the nature of my pain and how it relates to FM, specifically how it feels "bone deep" and asked about the general nature of FM pain with regards to enthesis. he sensed my pull back towards AS, and once again reassured me he doesn't think i am dealing with it and reminded me of the "95% of b27 positive white males who have it."

he told me to continue on flexeril every night 2 hours before bedtime and added neurontin (100mg) to the mix. but when i asked him about any of these affecting my ability to conceive a child, he told not to take anything while this was happening. i appreciated his concern and caution with this. i've only heard about definite issues with methotrexate and men trying to conceive.

another concern i brought up was the tingling/numbness in my hands and feet, along with the recent optic nerve findings from the ophthalmologist and how this might be a precursor to MS. while he didn't think i am dealing with MS, he agreed i should see a neurologist to check for it.

he ran more blood work and ruled out things like lyme disease. i am thankful he is being thorough this early.

i could ramble on for days about what my body and mind has gone through this past two months, but ultimately i truly feel and fear i am dealing with some sort of autoimmune arthritic condition. so far, a majority of my symptoms lend themselves to AS over some of the other possibilities, but because i know it's rather early in this process, anything is possible.

i have never experienced anything this intense in my entire life (i'm 32)...newly married, recently started to try becoming a father, then this. it's very tough and my sanity and patience are being tested like never before. it's been very hard on my family seeing me go through this. many of them still feel i'm dealing with strained muscles/overuse injuries. but it feels bone deep and so much more than that. it's hard to communicate my pain and genuine concern about what i'm feeling.

anyway, i'm rambling...just wanted to share my story and hopefully learn more about what some of you have gone through early in your process. thanks for taking the time to read this...

-jason





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