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Still waiting for answers... Part One
Hi, I am new to this forum! However, I have been reading this forum off and on for the past six months or so looking for answers. Since I am not the best typist, I have tried cutting and pasting some of my symptoms into this post. I have been to numerous doctors and so far no one has been able to figure out what is going on with me. Hopefully one of you may be able to provide some insight, or at least reassurance that I am not crazy:
January 2008 to present:
•January 2008- July 2008- severe fatigue-prolonged Mononucleosis, swollen spleen, never felt fully recovered from exhaustion/fatigue
•Periods/bouts of fatigue/exhaustion lasting days to weeks
•Ongoing blurry vision/double vision at times- the “double vision” seems is as if I am seeing double in each eye
•During “bouts” of exhaustion, I run a low-grade fever (usually under 101 degrees) most often in the afternoon when very tired. (I am unsure if the fever is causing the exhaustion, or the exhaustion is causing the fever)
•Some joint pain throughout body- mainly morning and sometimes nighttime, especially neck, hands, fingers, wrists, ankles, toes, and most recently left hip joint and edges of shoulders and elbows (pain varies from mild to moderate, occasional severe shooting-type pain on tops of hands and feet)
•Some swelling in finger joints, cramps and stiffness in hands and arms, joints ache occasionally
•Shooting pain in hands, feet, and legs and cramps have started waking me up at night (few times a month)
•Sore throat (often) may be from sinus drainage
•Frequent mild to moderate painful swollen lymph nodes/glands- neck, armpits, and groin
•Dull pain-left side spleen area- occasional
•Frequent headaches
•Frequent cough
•Frequent bladder problems- some leakage, urgency, and then an inability to start urinating when I feel like my bladder is full, can’t completely empty bladder without straining or leaning forward, up numerous times a night to urinate (at least 3 to 4 times) in bathroom every 60 to 90 minutes during daytime
•Bowel problems-either severe constipation or diarrhea (slight bowel incontinence 3 times in past year)
•Frequent shortness of breath and chest pain (lungs)
•Trouble swallowing, takes a long time to eat and chew
•Clumsy, uncoordinated, dropping things in hands more frequently (also fell in shower- had to go to urgent care September 2010)
•Heat intolerant & humidity intolerant, excessive sweating, whether indoors or outdoors (this has been a problem my whole life so unsure if this is applicable or relevant) but it has gotten progressively worse since 2005 hysterectomy. I avoid the sun due to extremely fair skin, must keep the inside temperature under 70, despise the summer weather, and avoid any outdoor activities unless it is under 70 degrees. It feels like I am having a “heat stroke” when I take a shower in morning & blow dry my hair, always need a “time out” to cool off.
July 2011 to present:
All of the above symptoms PLUS gradual symptom onset from mid-July to mid-August:
•Severe fatigue- sometimes severe, lasting for days to weeks at a time, varies in intensity of exhaustion, current ongoing “bout” since July 2011- October, eased off a bit until mid-November increasing in intensity since December. Subjectively, the fatigue often is debilitating and all-encompassing, the fatigue contributes to inability to walk at times, move or lift legs, barely can get off bed or shower some days because it takes too much energy, sometimes when severe, the overwhelming fatigue leads to irrational/uncontrollable crying from extreme frustration at not being able to accomplish necessary tasks around home or work.
•Numbness in left side of back- above waist and below waist (approx 12 to 14” span) comes and goes throughout day, recently started changing from numbness to a borderline painful pressure
•Numbness and tingling started in July with feet and ankles up to mid-calf, then gradually spread from hands and up to mid forearms, left side of back, then numb on left side face up to cheekbone and across lips, sometimes numbness on left side of genital area
•Weakness in mid-upper left arm
•Weakness in legs, mainly mid-thigh area, some trouble walking, clumsy, drop things frequently, stiff legs, muscle spasms and rippling spasms in legs
•Small objects seem to “launch” out of hands due to stiff/swollen and/or fumbling fingers
Incident in mid-August, admitted to hospital:
•Numb around left eye/vision- affected, no peripheral vision in left eye/could barely see out of left eye, numb in left ear canal-couldn’t hear, had trouble speaking, slurring words
•Everything generally seems to get worse in the afternoon and evening, cognitively
•Trouble enunciating words and stumble/garble words or syllables when very fatigued
(in addition to the previous symptoms, it seemed to escalate to this incident over a four to five week period)
Since that incident:
•Frequent weakness in hands, sometimes unable to grasp small objects- shakiness/trembling when trying to do fine motor movements, typing has slowed and more frequent errors, sometimes have to type with just 1 finger, which is definitely a problem for my job, some muscle spasms in hands, fingers
•Muscle spasms, tics, worse and more noticeable in afternoon/evening and on left side of body-more noticeable when still or tired, if I move one toe, rest will start to involuntarily spasm
•Dizziness and weakness throughout body occasionally
•Occasional weakness/shakiness in mid-thighs, occasionally legs feel like walking through water when fatigued, especially afternoon
•Occasional confusion, forgetfulness, trouble concentrating, especially in afternoon, can’t remember basic things sometimes (day or month is most frequently forgotten)
•Need absolute silence to concentrate on work, getting very hard to multitask
•Tongue feels thick sometimes, like it is hard to talk once I get fatigued
•Pain in center back neck all the time- did not mention to physician previously because thought due to large breasts/bra size, tried to get breast reduction in 2006 but insurance would not approve it.
•Frequent headaches:
•Daily sinus/regular headaches May 2011-August 2011
•Severe headaches started mid-August with intensity of migraine (but never had this type of headache with migraines) pain radiated from back of head forward, sometimes on one side, sometimes on both sides of head shooting forward, or center of head from back to front, sometimes pain wrapped around face near left cheekbone shooting forward, and occasionally included right cheekbone pain shooting forward. It felt like a “helmet of intense pain” or a “cage of pain” and could barely function. At times, the pain felt deeper in my head, sometimes behind and over my left eye. Recently have had a vibrating area on right side of head in a circular area about 5” in diameter towards the back and top of my head. Sometimes, I have a very severe squeezing feeling on the front of my head on both sides about 1” above temple going back about 5”
•Extremely irritable when fatigued and/or hot
•PT noted my symptoms were non-mechanical and appeared to have cranial nerve involvement (VII & VIII)
•In 1/2012, I had an another severe incident over a few days where I was unable to speak without slurring my words at times, a few individual incidents of complete confusion as to what I was supposed “to do” at work and home (totally blank/nothingness) and while resting in bed after one of the confusion incidents, my legs were completely numb with the exception of my feet, which were vibrating.
•Hearing heartbeat in my right ear occasionally
•Underwater feeling occasionally in left ear
January 2008 to present:
•January 2008- July 2008- severe fatigue-prolonged Mononucleosis, swollen spleen, never felt fully recovered from exhaustion/fatigue
•Periods/bouts of fatigue/exhaustion lasting days to weeks
•Ongoing blurry vision/double vision at times- the “double vision” seems is as if I am seeing double in each eye
•During “bouts” of exhaustion, I run a low-grade fever (usually under 101 degrees) most often in the afternoon when very tired. (I am unsure if the fever is causing the exhaustion, or the exhaustion is causing the fever)
•Some joint pain throughout body- mainly morning and sometimes nighttime, especially neck, hands, fingers, wrists, ankles, toes, and most recently left hip joint and edges of shoulders and elbows (pain varies from mild to moderate, occasional severe shooting-type pain on tops of hands and feet)
•Some swelling in finger joints, cramps and stiffness in hands and arms, joints ache occasionally
•Shooting pain in hands, feet, and legs and cramps have started waking me up at night (few times a month)
•Sore throat (often) may be from sinus drainage
•Frequent mild to moderate painful swollen lymph nodes/glands- neck, armpits, and groin
•Dull pain-left side spleen area- occasional
•Frequent headaches
•Frequent cough
•Frequent bladder problems- some leakage, urgency, and then an inability to start urinating when I feel like my bladder is full, can’t completely empty bladder without straining or leaning forward, up numerous times a night to urinate (at least 3 to 4 times) in bathroom every 60 to 90 minutes during daytime
•Bowel problems-either severe constipation or diarrhea (slight bowel incontinence 3 times in past year)
•Frequent shortness of breath and chest pain (lungs)
•Trouble swallowing, takes a long time to eat and chew
•Clumsy, uncoordinated, dropping things in hands more frequently (also fell in shower- had to go to urgent care September 2010)
•Heat intolerant & humidity intolerant, excessive sweating, whether indoors or outdoors (this has been a problem my whole life so unsure if this is applicable or relevant) but it has gotten progressively worse since 2005 hysterectomy. I avoid the sun due to extremely fair skin, must keep the inside temperature under 70, despise the summer weather, and avoid any outdoor activities unless it is under 70 degrees. It feels like I am having a “heat stroke” when I take a shower in morning & blow dry my hair, always need a “time out” to cool off.
July 2011 to present:
All of the above symptoms PLUS gradual symptom onset from mid-July to mid-August:
•Severe fatigue- sometimes severe, lasting for days to weeks at a time, varies in intensity of exhaustion, current ongoing “bout” since July 2011- October, eased off a bit until mid-November increasing in intensity since December. Subjectively, the fatigue often is debilitating and all-encompassing, the fatigue contributes to inability to walk at times, move or lift legs, barely can get off bed or shower some days because it takes too much energy, sometimes when severe, the overwhelming fatigue leads to irrational/uncontrollable crying from extreme frustration at not being able to accomplish necessary tasks around home or work.
•Numbness in left side of back- above waist and below waist (approx 12 to 14” span) comes and goes throughout day, recently started changing from numbness to a borderline painful pressure
•Numbness and tingling started in July with feet and ankles up to mid-calf, then gradually spread from hands and up to mid forearms, left side of back, then numb on left side face up to cheekbone and across lips, sometimes numbness on left side of genital area
•Weakness in mid-upper left arm
•Weakness in legs, mainly mid-thigh area, some trouble walking, clumsy, drop things frequently, stiff legs, muscle spasms and rippling spasms in legs
•Small objects seem to “launch” out of hands due to stiff/swollen and/or fumbling fingers
Incident in mid-August, admitted to hospital:
•Numb around left eye/vision- affected, no peripheral vision in left eye/could barely see out of left eye, numb in left ear canal-couldn’t hear, had trouble speaking, slurring words
•Everything generally seems to get worse in the afternoon and evening, cognitively
•Trouble enunciating words and stumble/garble words or syllables when very fatigued
(in addition to the previous symptoms, it seemed to escalate to this incident over a four to five week period)
Since that incident:
•Frequent weakness in hands, sometimes unable to grasp small objects- shakiness/trembling when trying to do fine motor movements, typing has slowed and more frequent errors, sometimes have to type with just 1 finger, which is definitely a problem for my job, some muscle spasms in hands, fingers
•Muscle spasms, tics, worse and more noticeable in afternoon/evening and on left side of body-more noticeable when still or tired, if I move one toe, rest will start to involuntarily spasm
•Dizziness and weakness throughout body occasionally
•Occasional weakness/shakiness in mid-thighs, occasionally legs feel like walking through water when fatigued, especially afternoon
•Occasional confusion, forgetfulness, trouble concentrating, especially in afternoon, can’t remember basic things sometimes (day or month is most frequently forgotten)
•Need absolute silence to concentrate on work, getting very hard to multitask
•Tongue feels thick sometimes, like it is hard to talk once I get fatigued
•Pain in center back neck all the time- did not mention to physician previously because thought due to large breasts/bra size, tried to get breast reduction in 2006 but insurance would not approve it.
•Frequent headaches:
•Daily sinus/regular headaches May 2011-August 2011
•Severe headaches started mid-August with intensity of migraine (but never had this type of headache with migraines) pain radiated from back of head forward, sometimes on one side, sometimes on both sides of head shooting forward, or center of head from back to front, sometimes pain wrapped around face near left cheekbone shooting forward, and occasionally included right cheekbone pain shooting forward. It felt like a “helmet of intense pain” or a “cage of pain” and could barely function. At times, the pain felt deeper in my head, sometimes behind and over my left eye. Recently have had a vibrating area on right side of head in a circular area about 5” in diameter towards the back and top of my head. Sometimes, I have a very severe squeezing feeling on the front of my head on both sides about 1” above temple going back about 5”
•Extremely irritable when fatigued and/or hot
•PT noted my symptoms were non-mechanical and appeared to have cranial nerve involvement (VII & VIII)
•In 1/2012, I had an another severe incident over a few days where I was unable to speak without slurring my words at times, a few individual incidents of complete confusion as to what I was supposed “to do” at work and home (totally blank/nothingness) and while resting in bed after one of the confusion incidents, my legs were completely numb with the exception of my feet, which were vibrating.
•Hearing heartbeat in my right ear occasionally
•Underwater feeling occasionally in left ear
Over past year have had the following tests:
•CT scan of chest 10/2010
•Pulmonary function test 10/2010
•CT of sinuses
•Referral to allergist/allergy tests-negative
•Referral to ENT
•Blood work multiple times
•Positive ANA 1:1280- 3 times
•Positive for SCL-70 but no symptoms of scleroderma- 3 times
•High CRP every time since July 2011
•High SED rate several times
•2 Lumbar punctures, one was run incorrectly by lab, had to have 2nd LP, tests run by same lab-also negative
•Brain MRI on 1.5T- more than two non-specific lesions in deep white periventricular matter
•Cervical/thoracic spine MRI on 1.5T, negative
•Echocardiogram
•Physical Therapy August-October 2011- therapist determined non-mechanical cause, mentioned possible cranial nerve involvement, and possible TMJ
•Bone scan 12/2011 found hyperostosis of skull, left convex scoliosis in thoracic spine, increased activity in hands, wrists, and feet, along with a 5cm bone lesion in femur that needed a follow up MRI (hematologist/oncologist said to repeat MRI in May 2012)
•X-rays of joints 12/2011 found mild degenerative osteoarthritis in hips and knees
•2nd sleep study (1st in 2008)- not enough apnea for a CPAP machine
Currently on the following medications:
•Adderall XR 30 mg
•Levoxyl 0.125mg
•Buprobion XL 150 mg
•Plaquenil 200mg, 2x daily (started October)
•OTC vitamins
•Veramyst 27.5 mcg per spray 2x’s per nostril per day- evening
•Nortriptyline 50mg-evening (started October) This medication (along with a first trial of in late august of amtriptyline) reduced the intensity of headaches and somewhat “dulled” the intensity of the numbness and tingling symptoms for a short while, but the location of numbness and tingling has remained in the same areas with additional areas on the right side of body, intensity has gradually increased again since November to present
•Tramadol/Fioricet/Maxalt as needed for headaches
My blood pressure and glucose levels are consistently within the normal range.
When all of these symptoms began this past summer, an internist sent me to Neurology thinking I had MS. I saw neurologist #1 at least 3 times and she insisted that none of my symptoms are related to anything more than stress or post-viral symptoms??? My GP thought I had RA, so she sent me to rheumatologist #1 that I saw several times. Rheum #1 thought I had a lot of stress in my life that could be causing these symptoms, she performed a lot of blood work multiple times and thought I may have lupus “brewing” but I have nothing more definite than symptoms and a positive ANA. Rheum #1 qualified the end of every visit with “you could still have MS five years from now.”
On to Rheumatologist #2, recommended by a family friend with Lupus and RA, this doctor spent a lot of time reviewing all of my records. She wasn’t convinced I had Lupus because it “sounded more like MS.” Rheumatologist #2 ordered a lot of tests that had never been run by Rheum #1. I was then referred to Hematologist/Oncologist #1 because of my bone scan & leg MRI results.
At the same time, I was referred to Neurologist #2, who is an MS specialist. I saw Neuro #2 for the first time last week, and she was wonderful! For the first time in 6 months this Dr. took the time to look at my MRI’s frame by frame, where Neuro #1 never even viewed anything other than the radiologist’s report. The MS specialist said she couldn’t make an MS diagnosis at the time of my visit, however, at the end of the visit, she gave me a list of to-do items including a repeat brain & c-spine MRI on a 3T machine, VEP, and nerve conduction tests. She also said that she liked difficult cases, LOL. Hope she meant symptoms, not patients. I was also sent to an ophthalmologist and negative for papilldema.
During this whole process, I have continually doubted myself because of most the doctors’ attitudes and even started to think I really was crazy! Yes, I do have anxiety and stress, but that has been caused by the past six months of NO ANSWERS! I am much less frustrated than I was after visiting Neuro #1 and the Oncologist.
Sorry this has been so long, but I feel like I really needed to get it all out there. Any advice or suggestions are very much appreciated. So this is where I am right now, still waiting for answers…
LizBeth 922
•CT scan of chest 10/2010
•Pulmonary function test 10/2010
•CT of sinuses
•Referral to allergist/allergy tests-negative
•Referral to ENT
•Blood work multiple times
•Positive ANA 1:1280- 3 times
•Positive for SCL-70 but no symptoms of scleroderma- 3 times
•High CRP every time since July 2011
•High SED rate several times
•2 Lumbar punctures, one was run incorrectly by lab, had to have 2nd LP, tests run by same lab-also negative
•Brain MRI on 1.5T- more than two non-specific lesions in deep white periventricular matter
•Cervical/thoracic spine MRI on 1.5T, negative
•Echocardiogram
•Physical Therapy August-October 2011- therapist determined non-mechanical cause, mentioned possible cranial nerve involvement, and possible TMJ
•Bone scan 12/2011 found hyperostosis of skull, left convex scoliosis in thoracic spine, increased activity in hands, wrists, and feet, along with a 5cm bone lesion in femur that needed a follow up MRI (hematologist/oncologist said to repeat MRI in May 2012)
•X-rays of joints 12/2011 found mild degenerative osteoarthritis in hips and knees
•2nd sleep study (1st in 2008)- not enough apnea for a CPAP machine
Currently on the following medications:
•Adderall XR 30 mg
•Levoxyl 0.125mg
•Buprobion XL 150 mg
•Plaquenil 200mg, 2x daily (started October)
•OTC vitamins
•Veramyst 27.5 mcg per spray 2x’s per nostril per day- evening
•Nortriptyline 50mg-evening (started October) This medication (along with a first trial of in late august of amtriptyline) reduced the intensity of headaches and somewhat “dulled” the intensity of the numbness and tingling symptoms for a short while, but the location of numbness and tingling has remained in the same areas with additional areas on the right side of body, intensity has gradually increased again since November to present
•Tramadol/Fioricet/Maxalt as needed for headaches
My blood pressure and glucose levels are consistently within the normal range.
When all of these symptoms began this past summer, an internist sent me to Neurology thinking I had MS. I saw neurologist #1 at least 3 times and she insisted that none of my symptoms are related to anything more than stress or post-viral symptoms??? My GP thought I had RA, so she sent me to rheumatologist #1 that I saw several times. Rheum #1 thought I had a lot of stress in my life that could be causing these symptoms, she performed a lot of blood work multiple times and thought I may have lupus “brewing” but I have nothing more definite than symptoms and a positive ANA. Rheum #1 qualified the end of every visit with “you could still have MS five years from now.”
On to Rheumatologist #2, recommended by a family friend with Lupus and RA, this doctor spent a lot of time reviewing all of my records. She wasn’t convinced I had Lupus because it “sounded more like MS.” Rheumatologist #2 ordered a lot of tests that had never been run by Rheum #1. I was then referred to Hematologist/Oncologist #1 because of my bone scan & leg MRI results.
At the same time, I was referred to Neurologist #2, who is an MS specialist. I saw Neuro #2 for the first time last week, and she was wonderful! For the first time in 6 months this Dr. took the time to look at my MRI’s frame by frame, where Neuro #1 never even viewed anything other than the radiologist’s report. The MS specialist said she couldn’t make an MS diagnosis at the time of my visit, however, at the end of the visit, she gave me a list of to-do items including a repeat brain & c-spine MRI on a 3T machine, VEP, and nerve conduction tests. She also said that she liked difficult cases, LOL. Hope she meant symptoms, not patients. I was also sent to an ophthalmologist and negative for papilldema.
During this whole process, I have continually doubted myself because of most the doctors’ attitudes and even started to think I really was crazy! Yes, I do have anxiety and stress, but that has been caused by the past six months of NO ANSWERS! I am much less frustrated than I was after visiting Neuro #1 and the Oncologist.
Sorry this has been so long, but I feel like I really needed to get it all out there. Any advice or suggestions are very much appreciated. So this is where I am right now, still waiting for answers…
LizBeth 922
Wow, you have been the gambit on tests and stuff, no wonder you are stressed!
Sounds like you may have gotten a good neurologist who will try and get to the bottom of "whatever" is bothering you. Several of your labs lean towards things that mimic MS but then none of us are MD qualified!
Have you done a "timeline" of MS s/s by years? This is something that neuro's like (good ones do) as it paints a picture of your s/s along the way without labs getting in the way.
Best of luck to you. We certainly don't wish MS on you but know you are looking for answers. Unfortunately, it often takes a very long time and a very curved path.....
Sounds like you may have gotten a good neurologist who will try and get to the bottom of "whatever" is bothering you. Several of your labs lean towards things that mimic MS but then none of us are MD qualified!
Have you done a "timeline" of MS s/s by years? This is something that neuro's like (good ones do) as it paints a picture of your s/s along the way without labs getting in the way.
Best of luck to you. We certainly don't wish MS on you but know you are looking for answers. Unfortunately, it often takes a very long time and a very curved path.....
Thank you for the information, however, fibromyalgia has already been excluded as a diagnosis. I am not sure why your post is showing as the best answer on the MS forum as I am new to this forum and welcome any helpful information.
I am not sure why he showed up here either. It is a site for patients, not MDs
go figure
go figure
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