Hello, I am new here and without diagnosis for the last 2.5 years, I'm only 36.
I have been through hell not knowing what this illness is and neuros dismissing my symptoms, it's all in your head, sure.
Bilaterally, I have muscle weakness in legs, arms, and I believe hips too.Over time, I have developed chronic pain in my feet, knees, and hips, and being on my feet makes it worse. I have muscle twitching/fasciculation, from the onset 2.5 years ago. I feel tightness in my muscles, especially calves/achilles tendon, like a pulling, squeezing sensation that never goes away. My fingers, toes, arm, hands, shoulder, sometimes jerk out of nowhere, and this usually happens when I try to relax in bed. There was a period when this was happening so much, I couldn't sleep. I have these crawly irritating sensations in my legs when I try to sleep, like what they call restless legs (this became really bad several months before things came to be what they are now). I have these strange low vibrations going through my body when at rest, and other times when I put pressure on my feet, these vibrations/internal shakiness become strong. I feel this cold burn in my feet, especially the heels where my feet hurt the most. I feel off balance walking, and I feel unstable when moving about the sidewalk, and also feel this off balancde sensation in my eyes too. I have dry eyes, mouth, vagina, skin, swallowing issues, lisping certain words, neck and jaw tightness.
I've had 3 emg/ncv which didn't show anything so they say, which is concerning because I believe my symptoms scream NEUROPATHY or MYOPATHY of some sort. At least one dr, not a neuro, admitted that these studies will not catch all neuropathies/ myopathies. I often wonder what their criteria is for abnormal, if I'm having all these problems and "normal" electrodiagnostic studies.
I have only 3 abnormal tests: high c-reactive protein(9.0), dry eyes and mouth through stain and collection tests in sjogrens clinic, mild lymphocytic infiltrates in minor salivary glands(biopsy), and most recent:
Multiple restriction bands in both Csf and Serum, in which the origin cannot be determined whether coming from CSF or Serum. Normal IgG index, protein, etc...
The neuro would not explain the results to me and that is why I am here. I have been frowarded to an MS Clinic and have to wait 3 months to get answers. It's torture what this neuro has done to me to add to my stress.
Please, can anyone provide me with insight about my specific pattern. It does not fit into the classical MS pattern, although I read that 10% patients can have it- if this is this mirror pattern?
Which other diseases could present this o-band pattern?
I was so active before this, I can't imagine what happened to me :(
Thanks for reading,
I wish I could answer your specific questions but I don't have the medical knowledge to suggest illness possibilities. I notice, though, that you don't mention MRI testing. Have you had this done this, and if so, what were the results? If not, get your present doctor to order MS-specific MRIs, with and without contrast, of brain, c-spine and t-spine, using 3T technology. (See our Health Pages, to right of screen.) Get your own copy of the images, as well as the radiology report, and take these with you to the MS clinic appointment. Also take the results of all other testing. This could spare you more waiting around and more doctor trips, hopefully leading to a quicker diagnosis, though I can't promise that.
I assume Sjogrens has been ruled out. Did you have a lip biopsy? I believe that's the ultimate test for Sjogrens.
I see you are figuring your way around our forum! Thanks for joining us. Definitely listen to the good advise Ess gives above about your testing so far, and having those results ready to bring with you for the specialist.
Three months is fairly common to get in with a neuro, and especially so with a specialist. It may feel like forever, but indeed the day will come. In the meantime. From what I know of the o-banding is they could conclude it was from CNS origin if the banding was unique to the CSF (not in the serum).
What you say here is that it is in both. Which, I thought pointed away from the possibility it's of CNS origin. That may end up being a very very good sign for you. Maybe you have something treatable!
The doctor could have shed a bit more light on that for you. I'm sorry that did not happen.
What is good however, is that this doctor did not know, and referred you. That's what they are suppose to do. I'm glad you are moving forward.
Please hang in there best you can. Peek at our health pages to learn more about MS if you like, and the o-bands, and so much more. Look toward the right of your screen and down, and you'll see them there.
I forgot, MRI of brain- many UBOs, neuros blew this off, I have no headaches. Cervical showed nothing. Both on Tesla 1.5- I will plan to get these re-done when I go to MS clinic, as I don't have a DR to order these and they are about 1.5 to 2.5 years old.The t-spine is recent on tesla 3 and normal.
I have positive lip biopsy for-lymphocytic infiltrates sialadenitis, mild focus score, but in a nutshell, results and symptoms reflecting sjogrens constallation (the clinic report says). So I'm wondering, is this neuro sjogrens, MS, with peripheral involvement but also showing mirroring inflammation in my blood and CSF? I've heard that other illnesses cause dry eyes, mouth, skin, vagina, one of which is MS?
To add more, I've had many tests done in rhematology: ANA, lupus antibodies, sjogrens AB, scleroderma, electrophoreisis, immunoglobulins, complements, cryoglobulins, and all of them come back negative or normal range.
I've tested negative for gluten AB all 4 tests. Normal B12, B6, A, E, magnesium/minerals. The only abnormal result early on was low D, and no it's up to 60 ng/ml (from 16) after supplementing.
The only wierd results were high 24hr urine cortisol, just borderline, but probably from all the stress and normal cortisol suppression test. Low copper output in 24 hour urine, low serum methamelonic acid (but very good b12 levels), normal high serum homocystine levels.
have you had a spinal tap, and if yes, what did the tap show, any o-bands?
we tinkered with the lyme idea, and i have some borderline results ob the western blots (some +, others indeterminate), and positive PCR is one subsection of the PCR for borrelia test. Negative for sub-infections ticks, and positive HHV6 and Epstein Barr full panel. All through IGENEX.
Really not sure what to do with this info anymore, but will be taking it to the MS clinic with me and demanding a more indepth infectious diseases/viruses workup. If you have more input, advice, please do.
I saw a quack "lyme specialist", antibiotics didn't do anything for me and took them for longer period of time, ruined the balance in body from antibiotics, and wasted lots of money on quack dr, if only it helped.
Have you been to ucsf yet?
I don't know what else causes dryness, but doctors should. I'd do more comprehensive Googling if I were in your shoes, aside from grilling docs.
MS can and does affect the autonomic nervous system. Not frequently, but certainly well-reported on. I'm a case in point. My 'thermostat is broken.' I'm so hot (and not in the good way) all the time. Live in the Mid-Atlantic area and haven't had a sweater on all winter. Have had furnace on less than 10 hours total. Summer is murder, etc.
It's just that in quite a few years of learning about MS, I've never read or heard anything about dryness caused by MS. Could of course be wrong. Lulu54 may know more on this subject, so if she doesn't post here, try sending her a PM.
My problem isn't the same as heat sensitivity as it's generally understood in MS. What you describe is typical for MS. Heat raises the core temp, of course, and that in turn makes malfunctioning nerves more malfunctional. Cooling down generally takes care of things.
For me, I just get hot. I hate doctors' waiting rooms because they always seem way overheated to me, and even supermarkets also feel hot sometimes. I then perspire profusely, especially around my hairline and at the back of my scalp, but everywhere, more or less. This interferes with my life in some fundamental ways, but if my symptoms get worse I'm usually not aware of it because the heat in itself is so bad. Cooling down is good!
I read your post and joined this group because I now realize that I'm not alone. I have been very ill for 17 months and done the world tour. Have you been checked for Sarcoidosis? I have multiple Obands in my CSF and serum, a high positive ANA, positive SSB, elevated ACE and high IgM. Have you have a salivary gland function test and Schirmer's test. Both of mine are abnormal, constant fasciculations that never stop, very painful neuropathy particularly in my left arm, hand and foot, for 6 months violent involuntary movement and still suffer with chronic dystonia on the left side of my body, weight loss and muscle atrophy, ptosis in right eye, and neuralgia in my face and constantly in my nose area, I am in severe pain to sit, stand and stairs are almost impossible for me. I was in a wheelchair for months and still need for long distances. Sjogren's was ruled out by the biopsy, and because of Obands in the serum and CSF, I have to wait for repeat spinal tap because MS still isn't ruled out. I have developed a huge nodule in my right arm but RA factor is negative, no dexterity at all on my left side, lesions on the right side of my brain, I have color desaturation in my right eye and also get vertical diplopia when reading. Pain is unmanageable at times. All of this....but still no diagnosis. I've been tested for many things, many tests abnormal but not fitting into any sort of traditional box. I do know it's not ALS, Huntington's, Mystenia Gravis or Sjogren's. Starting to look like Neurosarcoidosis. Sounds like a lot of the symptoms that you have. Have your ACE levels been checked?
O bands for MS are NOT shown in both. They only show up in the spinal fluid. And not all of us have O bands, I have none. You don't need a repeat spinal tap if they drew blood when they drew spinal fluid, which it sounds like they did.
MS is seldom bilateral, it happens, but not like you are describing. Many medications will give you dry mouth.
Be careful with Dr. Google, MS is always in there as a "maybe".
True, it is not unusual for neuro's to be booked up way in advance, I waited 9 months for my first visit with my now favorite neuro and he's 465 miles away but it was worth the wait. When I now make my "next" appts, he's booked up 6 months in advance.
I keep coming back to so much being bi-lateral and that so swings away from MS.
Good luck and am so sorry you are going thru this……you need a specialist, I'm just not sure which one. Have you tried getting into a teaching hospital? They have some wonderful brains, resources and equipment!
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