Aa
Is this MS??? Struggling for a decade now.....
Sorry for the length...
My first strange symptom happened when I was just 17, I am now 40. I woke up to go to the bathroom and had to drag myself there. I was pregnant and my legs weren't working. It didn't dawn on me that something was out of whack (I know weird), but when I went to stand up to "walk" back to bed, I fell and couldn't get up. Husband came and carried back to bed. Within 24 hours symptom went away. During my next pregnancy, I couldn't walk without falling for 2/3 of it. Other symptoms plagued me in the seven years between them, like a rash and touch sensitivity.
Other problems began in 1998; I started having nausea every night for 6 mos. It would go away and then come back 6 mos. later. This cycle continued for years.
In 2001 I started having burning sensations, redness, stinging pains, and heat in my hands and feet and my hands would ache terribly. I was always bone tired, exhausted!!! Around the same time I began having terrible itchiness every time I would do anything physical. Balance issues too, tripping to the right side. I also started having double vision but with a normal eye exam. I also had my first migraine at the time when my vitreous layer tore away from the interior of my eyeball. Also, Inability to move my bowels.... The final thing is that I began having memory issues. I asked questions over and over, couldn't remember where I was going, why I was going there, what I was supposed to be getting. It became epidemic to me, to the point my husband actually said "Am I going to have to put you in a nursing home?" :-/ I was just 30.
I started feeling better in 2004.
In 2007, The burning sensations returned with a fury as well did the memory issues and returned with severe exhaustion and joint and muscular pain, nausea, dizziness, blurred vision, migraines, off- balance, vertigo, inability to move bowels, Reynaud’s (sp?), ...
I started feeling better in 2009, however the joint and muscle pains got better, but didn't go completely away this time, neither did the bowels issues.
In 2011, the joint and muscle pain is evident in both sides, however the right side is sooooo much worse! I always limp because of the right side. I knew it hurt worse, but didn't realize there was so much difference in the mechanical part of it. The pain mgmt doctor did a range of motion test on me and I couldn't believe the difference between the right and the left. My range of motion is at least 50% less on the right than the left. It is my entire right side. The muscles are harder and tighter. He put me on Zanaflex, and I started getting some relief, but it does not go completely away. I also have had a return of these other symptoms, occasional dizziness and vertigo, extreme exhaustion, shakiness/tremors, nausea, muscle pain, cramping of right foot and hand, muscles in the right side of my neck are extremely tight to the point that it is clearly visible, neck pain, hip pain, tripping, right foot dragging which is what is causing the tripping, double vision occasionally, migraines, really bad memory issues are starting again, inability to move bowels, Reynaud’s (sp?), ear pain with wide open Eustachian (sp?) tube, etc. I feel like I am forgetting something still. Oh yeah, I also have several large 1-2" lumps over my sacral area in the deep tissue. I also have Lichen Plantus, both coetaneous, scalp, and oral, which is thought to be an auto-immune condition.
I have been under the "care" of a Rheumatologist ASSISTANT for 3 years now. I have never seen the actual doctor. She ordered test when I first started seeing her, but will not run anything now with the exception of a Vit-D level test. I have had problems with being deficient, but it helped with my tailbone pain before, but no longer does. In the beginning, she ran the ANA, RH-Factor, Sed Rate, C-Reactive Protein (?), and all kinds of other tests, a few were out of norm, but not many. The Sed Rate was like 17x higher than it was supposed to be and the C-Reactive Protein was 5x higher. The ANA and RH were normal or negative. The internal med doctor who sent me to her told me to have those tests repeated every 6 mos. to a year as long as symptoms continued or returned. This "doc" will not repeat the tests. She has flat out refused and said that if you run the tests over and over it will eventually come up positive just due to lab error. She has only ran these tests ONE time. I am frustrated. She said it is likely Fibromyalgia and even though the symptoms have morphed to the right side and I've developed LP (auto-immune) she still refuses to repeat any tests from 3 years ago. It’s like she has decided that is what it is and will not listen to the new or changing symptoms. BTW, I have never had all of the points to diagnose Fibro during an appt.
Over time I have had 3 Brain MRIs, all within 2 years. I have an 8mm Pineal Cyst and a Partial Empty Sella (sp?), which is all that really shows on them.
Does anyone else think that this could be MS or Lupus or something like that? I would really like a doctor's opinion too. I had to quit my job in 2001, because I couldn't keep my thoughts straight, I was exhausted, and having trouble with the vision. I still cannot work, because of pain, memory, and lack of stamina. Every time I have tried to return to work, I get so run down so fast that I get sick constantly. I have requested a change in doctors to a civilian provider from the military treatment facility. I am praying for a doctor that will listen to me and rerun some tests.... I don't think its Fibro. I'm not sure what it is, but, one last mention
I recently had a respiratory infection again and the antibiotic I was put on required me to stop taking the Zanaflex, while I was taking it. My improvement I experienced while on the Zanaflex has gotten worse again and is back to where it was without the Zanaflex before. I can start taking the Zanaflex again tomorrow. Zanaflex is typically prescribed for MS, could this mean anything, that the right-sided pain and stiffness has gotten worse again?
Extra Info: I have Hypothyroidism, surgically menopaused (massive fibroids), appendectomy, gallbladder removed (huge gallstones, doc said largest he has ever seen), gastric bypass, Hypoglycemia.
I did have Mononucleosis when I was 16 and again when I was 20-ish. I also have had Shingles 2x in 2011. My grandfather had Rheumatoid Arthritis.
My first strange symptom happened when I was just 17, I am now 40. I woke up to go to the bathroom and had to drag myself there. I was pregnant and my legs weren't working. It didn't dawn on me that something was out of whack (I know weird), but when I went to stand up to "walk" back to bed, I fell and couldn't get up. Husband came and carried back to bed. Within 24 hours symptom went away. During my next pregnancy, I couldn't walk without falling for 2/3 of it. Other symptoms plagued me in the seven years between them, like a rash and touch sensitivity.
Other problems began in 1998; I started having nausea every night for 6 mos. It would go away and then come back 6 mos. later. This cycle continued for years.
In 2001 I started having burning sensations, redness, stinging pains, and heat in my hands and feet and my hands would ache terribly. I was always bone tired, exhausted!!! Around the same time I began having terrible itchiness every time I would do anything physical. Balance issues too, tripping to the right side. I also started having double vision but with a normal eye exam. I also had my first migraine at the time when my vitreous layer tore away from the interior of my eyeball. Also, Inability to move my bowels.... The final thing is that I began having memory issues. I asked questions over and over, couldn't remember where I was going, why I was going there, what I was supposed to be getting. It became epidemic to me, to the point my husband actually said "Am I going to have to put you in a nursing home?" :-/ I was just 30.
I started feeling better in 2004.
In 2007, The burning sensations returned with a fury as well did the memory issues and returned with severe exhaustion and joint and muscular pain, nausea, dizziness, blurred vision, migraines, off- balance, vertigo, inability to move bowels, Reynaud’s (sp?), ...
I started feeling better in 2009, however the joint and muscle pains got better, but didn't go completely away this time, neither did the bowels issues.
In 2011, the joint and muscle pain is evident in both sides, however the right side is sooooo much worse! I always limp because of the right side. I knew it hurt worse, but didn't realize there was so much difference in the mechanical part of it. The pain mgmt doctor did a range of motion test on me and I couldn't believe the difference between the right and the left. My range of motion is at least 50% less on the right than the left. It is my entire right side. The muscles are harder and tighter. He put me on Zanaflex, and I started getting some relief, but it does not go completely away. I also have had a return of these other symptoms, occasional dizziness and vertigo, extreme exhaustion, shakiness/tremors, nausea, muscle pain, cramping of right foot and hand, muscles in the right side of my neck are extremely tight to the point that it is clearly visible, neck pain, hip pain, tripping, right foot dragging which is what is causing the tripping, double vision occasionally, migraines, really bad memory issues are starting again, inability to move bowels, Reynaud’s (sp?), ear pain with wide open Eustachian (sp?) tube, etc. I feel like I am forgetting something still. Oh yeah, I also have several large 1-2" lumps over my sacral area in the deep tissue. I also have Lichen Plantus, both coetaneous, scalp, and oral, which is thought to be an auto-immune condition.
I have been under the "care" of a Rheumatologist ASSISTANT for 3 years now. I have never seen the actual doctor. She ordered test when I first started seeing her, but will not run anything now with the exception of a Vit-D level test. I have had problems with being deficient, but it helped with my tailbone pain before, but no longer does. In the beginning, she ran the ANA, RH-Factor, Sed Rate, C-Reactive Protein (?), and all kinds of other tests, a few were out of norm, but not many. The Sed Rate was like 17x higher than it was supposed to be and the C-Reactive Protein was 5x higher. The ANA and RH were normal or negative. The internal med doctor who sent me to her told me to have those tests repeated every 6 mos. to a year as long as symptoms continued or returned. This "doc" will not repeat the tests. She has flat out refused and said that if you run the tests over and over it will eventually come up positive just due to lab error. She has only ran these tests ONE time. I am frustrated. She said it is likely Fibromyalgia and even though the symptoms have morphed to the right side and I've developed LP (auto-immune) she still refuses to repeat any tests from 3 years ago. It’s like she has decided that is what it is and will not listen to the new or changing symptoms. BTW, I have never had all of the points to diagnose Fibro during an appt.
Over time I have had 3 Brain MRIs, all within 2 years. I have an 8mm Pineal Cyst and a Partial Empty Sella (sp?), which is all that really shows on them.
Does anyone else think that this could be MS or Lupus or something like that? I would really like a doctor's opinion too. I had to quit my job in 2001, because I couldn't keep my thoughts straight, I was exhausted, and having trouble with the vision. I still cannot work, because of pain, memory, and lack of stamina. Every time I have tried to return to work, I get so run down so fast that I get sick constantly. I have requested a change in doctors to a civilian provider from the military treatment facility. I am praying for a doctor that will listen to me and rerun some tests.... I don't think its Fibro. I'm not sure what it is, but, one last mention
I recently had a respiratory infection again and the antibiotic I was put on required me to stop taking the Zanaflex, while I was taking it. My improvement I experienced while on the Zanaflex has gotten worse again and is back to where it was without the Zanaflex before. I can start taking the Zanaflex again tomorrow. Zanaflex is typically prescribed for MS, could this mean anything, that the right-sided pain and stiffness has gotten worse again?
Extra Info: I have Hypothyroidism, surgically menopaused (massive fibroids), appendectomy, gallbladder removed (huge gallstones, doc said largest he has ever seen), gastric bypass, Hypoglycemia.
I did have Mononucleosis when I was 16 and again when I was 20-ish. I also have had Shingles 2x in 2011. My grandfather had Rheumatoid Arthritis.
You're welcome, Miserable. My answer was given that you posted on an MS board ...so I sort of figured you felt it was a neuro problem. So the head of neurology at your hospital has already reassured you that it is in fact not a neuro problem? So, ignore my post above...lol
I hope you find answers with your new rheumatologist. I guess neuro problems arent the only ones that take forever to get answers.
Good luck on your journey.
I hope you find answers with your new rheumatologist. I guess neuro problems arent the only ones that take forever to get answers.
Good luck on your journey.
Thanks so much for your replies thus far. Because I have military healthcare thru my husband, sometimes it seems we tend to get subpar care. I don't currently have another appointment scheduled for neurology, because I seriously doubt that it would do any good. When I was seen by Neuro, it was in fact the Directory of Neuro that saw me. Once he got the brain mri, he just basically stopped there and said my vertigo, nausea, double vision, and headaches were a result of Migraines. All of my other symptoms were ignored. :-/ Then he referred me to the Rheumatologist, who I never actually got to see, just the assistant, who did an exam, tests, and a bone scan. The bone scan had additional uptake in my ankles, feet, hands, wrists, neck, and a hyper highlighted spot on one finger, and a small area of additional uptake on my right iliac crest ? (right hip blade). Also the tests were the ones that indicated very high ESR and moderately high CRP, neg. ANA and RH. All of that was about 3 years ago.
I do have a new Rheum appt. in February. Im going to get all of my test & imaging results together and take them with me along with as much history as I can. I also intend to take my husband, hopefully he can shed additional light for the doc as well as help me remember anything the doc says or has me schedule. I have basically no short term memory if I don't write it down or plug it in my calendar. My thyroid is within normal limits on medication, though I do have 3 nodules. One is relatively stable and the other two are new since the last time I had an ultrasound. All 3 are different types of nodules, I think 2 are "warm or hot" and one is a "cold" nodule. Approximate size from memory: the largest (oldest) is only 6mm and the other 2 are 4mm and 2mm. Very small. Can't remember much more without dragging the results out. The doc sent me to ENT to have a FN biopsy, but he said they are too small to biopsy. He said wait and see, so that's what I am doing.
I do need to go back to the doc about the moveable lumps on my sacrum, but at first, whern there was only 1, I figured it was just a lipoma. Now that it has doubled in size in approx. 6 mos. and 3 more have appeared, I think I need to have it addressed, just to make sure, because of the hip pain and burning sensations.
Anyway, that's about it for now. I will definitely update when I know what is going on. This seems to not be getting any better anytime soon. Some days I wonder how far this is going to limit me. Will the pain in my right leg/hip/foot eventually take away my ability to drive? How much longer will I be able to....I just don't know. I know I can only do short trips now. It's hard to push on that brake and gas pedal. :-/
Thanks for listening and the suggestions!!! :-)
I do have a new Rheum appt. in February. Im going to get all of my test & imaging results together and take them with me along with as much history as I can. I also intend to take my husband, hopefully he can shed additional light for the doc as well as help me remember anything the doc says or has me schedule. I have basically no short term memory if I don't write it down or plug it in my calendar. My thyroid is within normal limits on medication, though I do have 3 nodules. One is relatively stable and the other two are new since the last time I had an ultrasound. All 3 are different types of nodules, I think 2 are "warm or hot" and one is a "cold" nodule. Approximate size from memory: the largest (oldest) is only 6mm and the other 2 are 4mm and 2mm. Very small. Can't remember much more without dragging the results out. The doc sent me to ENT to have a FN biopsy, but he said they are too small to biopsy. He said wait and see, so that's what I am doing.
I do need to go back to the doc about the moveable lumps on my sacrum, but at first, whern there was only 1, I figured it was just a lipoma. Now that it has doubled in size in approx. 6 mos. and 3 more have appeared, I think I need to have it addressed, just to make sure, because of the hip pain and burning sensations.
Anyway, that's about it for now. I will definitely update when I know what is going on. This seems to not be getting any better anytime soon. Some days I wonder how far this is going to limit me. Will the pain in my right leg/hip/foot eventually take away my ability to drive? How much longer will I be able to....I just don't know. I know I can only do short trips now. It's hard to push on that brake and gas pedal. :-/
Thanks for listening and the suggestions!!! :-)
Miserable in Tx,
HI there,
I'm sorry for what you are going through. Question for you....Is your hypothyroidism under control? Though it's not always seen in the literature, thyroid dysfunction can completely mimic MS symptoms.
I hope you get that 2nd rheumy doc lined up. With the auto-immune issues you definitely need another fresh look. From what you've said here, I'm doubtful re-runs of imaging will tell the tale.
You need a fresh rheumy to review all you have going on currently.
-Shell
HI there,
I'm sorry for what you are going through. Question for you....Is your hypothyroidism under control? Though it's not always seen in the literature, thyroid dysfunction can completely mimic MS symptoms.
I hope you get that 2nd rheumy doc lined up. With the auto-immune issues you definitely need another fresh look. From what you've said here, I'm doubtful re-runs of imaging will tell the tale.
You need a fresh rheumy to review all you have going on currently.
-Shell
Well now...let's see. The idiots ran three brain MRI's but never thought to do a cervical spine MRI? Ya need one. Make sure it is done on a 3t and not a 1.5 MRI. The 3t is more powerful and is needed for a spinal MRI because the spine is such a confined space. Ya can have MS without one lesion on the brain. I am an example of this.
Get to a good neuro that knows how to do a good exam (this should take up to an hour or so) and will run the proper tests. Here I would say go to a neuro that has practicing rights at a teaching hospital or big trauma center. Those hospitals usually have the best and newest machines.
Keep us posted on your journey. If it is of any help, I ran for ten years to different specialists and none caught it....up to and including a idiot neuro that I sat with for three years with (coughs) a pinched nerve.
Sumana
Get to a good neuro that knows how to do a good exam (this should take up to an hour or so) and will run the proper tests. Here I would say go to a neuro that has practicing rights at a teaching hospital or big trauma center. Those hospitals usually have the best and newest machines.
Keep us posted on your journey. If it is of any help, I ran for ten years to different specialists and none caught it....up to and including a idiot neuro that I sat with for three years with (coughs) a pinched nerve.
Sumana
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