Please help- so scared- just need support

[Jenna]

Pinguino-
I'm wondering if they have tested you for sjorgens antibodies? If I remember right, you said you have dry eyes and mouth? These are I believe classic symptoms of sjorgens syndrome. I've been tested for that along with various other autoimmune disorders. All negative.

I also had a vitamin D level of 22 which is low. Am taking supplements for that now. My neurologist did not check my vitamin D level. Was done by a general doctor. Maybe you should see if yours is low as well. I find it interesting that you had a b12 deficiency with no issues at the time it was low, with issues appearing months later after you were getting injections. I stopped taking my sublingual b12 about a year ago. I should never have stopped because I had gastric bypass in 2004 and gastric bypass patients are supposed to take b12 sublingual forever. So I started taking it again at some point because first blood check when all this burning started in September revealed b12 of over 1000 which is good. I guess my point is, I wonder if the damage from having a b12 deficiency can appear months later even though at the time of appearance of symptoms, b12 levels are normal again. Kind if like a delayed response before seeing the symptoms/side effects of having low b12. Just a thought.
It's really hard to go about daily life with this and scares me that this may never go away. Trying to keep a positive attitude that this will go away at some point. I am not trying to push you into taking an antidepressant and sorry if it seems I am. I can only tell you for me it is what has kept me from losing it because my anxiety was debilitating where all I could focus on were my health issues. My whole life had an underlying anxiety every waking moment. Even when I wake up, the anxiety was there. I was diagnosed with OCD about health issues. I don't obsess about anything else really in life other than the health stuff.
The Gabapentin does help but I get confused when I have the burning now for two weeks, it seems not as painful but still hurts. Then it will go away for 2-3 weeks and I will forget about it, yet it always comes back. So I don't understand the cycle of this. I wonder is the medicine really helping? It is encouraging in September when this started, burning was very intense and would go away maybe 1-2 days per week. Now when it goes away, it's gone a 2-3 week period. I guess that's a step in the right direction.
I know you said you have had lira of bloodwork but do you know if they have tested you for autoimmune diseases but that's a definite must in my opinion. I don't know if it would be helpful for you but I can get the paperwork and give you a list of what I've been tested for. These blood tests are not just by my neurologist but by a rheumatologist as well.
Are you burning everyday or do you have days of no burning? My palms are also sore, was wondering if yours are too?

[Jenna]

I meant lots of blood work, not lira. Sorry for my typo.

[Pinguino]

Hi Jenna will reply later when i have more time. My hands get also sore. My fingers.. but not all the time.. same with the burning it is not constant.. when i wake up everything is fine but when i am at work the tingling and burning start. No i am at home and there is no burning at all, my hands are cold now. I really don't get it. When i go to bed i don't have burning as well... what i have read most people have more pain during the night.

I never received the bloodwork figures. He just told me everything is ok only vit d is little low.

I really don't like the health care here in the Netherlands.

I will ask Monday if i can receive copy of the bloodtest done in July.

About antidepressants, i have it at home but it is a ssri and i know thats only the classic will help against burning pain so i am.noy sure if i should take this...

[jebmd]

Hi Jenna,
Yes, my "own personal hell" started in September 2013 after a very bad viral illness and then the twitching began-in full force and everywhere!! All new to me. I had just completed a full work up of anemia and weight loss (15 lbs over 6 weeks) with colonoscopy, gastroscopy and CT scan of the chest, abdomen and pelvis-talk about incidental findings, the radiologist reported thyroid nodules-all else was clear but this was news to me. To make a very long story short, I had an MRI-all fine apart from the usual age related changes in the lower spine, 2 EMGs (Dec 2013 and March 2014)-both fine and neurologist assured me that I DO NOT have ALS and a one year one in Dec 2014-also fine. I still twitch now and then but I am firmly convinced that if I have a terminal illness IT IS NOT ALS. The thyroid however turned out to be more than I bargained for. After 2 benign biopsies, I decided that the compression symptoms in the neck were driving me crazy so I had the right side of the thyroid removed in April 2014-only to find out that one nodule (the smallest one, never biopsied) was a cancer!!! Talk about stress and the twitches went crazy. I had the other side of the thyroid removed a month later and all is clear-except that now I have to take Vit D, B12, calcium (damage to the parathyroids at surgery), synthroid and iron daily. I can practically make a meal of my pills. I was told by the thyroid cancer specialist that I could have lived my whole life with this tiny little cancer and have never known about it and I have read studies that say that 30% of cadavers have these thyroid cancers that never caused problems while the person was alive. Ergo-if I had never had the CT scan, then I never would have known about the thyroid and I would likely be less stressed-hence the term "incidentiloma"-no one would have known, except that someone happened to be looking. Sometimes too much information is BAD.
And now my 19 year old daughter who is a nursing student and aware of my history is having "compression symptoms" and now she has an US scheduled for Jan 30 to look at her thyroid and lymph nodes-too much knowledge again!! And another source of stress for me.
So I go back to my original advice-try and live healthy, eat well, exercise, take Vitamin D unless you live in a warm sunny place (I do not-Edmonton, Canada is in the deep freeze 8 months/year) and try to face every day with a positive outlook, it is the only way to stop the anxiety from controlling your life. And believe your doctor-they truly want to help and provide answers but speaking from experience, there are still many things we do not know as health care providers and we can only offer our best advice.
Take care,
J

[jebmd]

Sorry forgot to answer your paresthesia question-neurologists can also test for sensory issues and to my mind this would be the appropriate course of action. My young patient with Chilblain's is on Lyrica 150 mg morning and 300 mg evening and it gives her some relief of the burning. I am still awaiting her consult with the neurologist regarding her seizures. she has not had an MRI or a CT head yet but I have told her that if the neurologist does not do it then I will.

[leaflea]

Incidental findings indeed! I had a CT summer of 2013 for a totally unrelated reason and they found what they called a functional ovarian cyst about 3cm. Went for ultrasound and they couldn't find that ovary, but found a cyst now in the other. Had to go back every month for a several months because the one wouldn't go away, then another one showed up or grew, one had some kind of abnormal features which scared the heck out of me, but then they said it didn't matter because it went away completely after that. A whole lot of unnecessary stress that I believe contributed to this mess.

Great to hear from you jebmd! Glad to hear it sounds as if you are doing well.

[Jenna]

Hi JebMD and Leaflea,
Having a really painful burning day yesterday and today. The burning pain feels very similar/almost exactly like a sunburn but can't see anything on my skin. When the burning gets this bad, it's so hard to function through the day with pain like this.

JeBMD, sounds like you really had a scare with the thyroid and you too Leaflea. Glad your cyst went away , I know all too well about ovarian cyst problems as my doc watched a complex ovarian cyst for about a year before I had to have it removed along with the remaining atrophied ovary (bone marrow transplant in 1994 at age 19 due to CML/leukemia and atrophied ovary was due to the premature menopause caused by chemo for the BMT. Anyways, I can relate to both of you

I keep reading online for reassurance about EMGs and twitching, also about EMGs being done too early and whether or not an EMG must be done in the affected limb. Seems to be conflicting information about this and I don't know what to believe. I guess somehow in my mind I will either need to accept that the 4 places the neuro stuck me were enough. I got the EMG report print out and all the columns say either None or Normal. I think it would be easier to move on if I don't have all this burning pain and the incidental brain lesion finding. I also have been taking prescription Ativan for the last two years (anywhere from .5mg to 1mg per day) and I'm wondering if this burning pain can be some kind of tolerance withdrawal as I've read about this also. I decided in the last couple days to stop taking he Ativan and incidentally the burning went from tolerable to really bad. This may jut be coincidental.

JebMD, I hope everything turns out well for your daughter. I can imagine its not easy being a doctor and not worrying about the various conditions you see patients with, the mind is so powerful and amazing what we can convince ourselves of.

Please excuse my vent in my earlier paragraphs, I know I'm repeating things from prior posts but it often feels better to vent and not feel so alone with this.

Thank you both a again

Jenna

[jebmd]

Hi Leaflea!! and Jenna,
The ovarian cyst thing!!! Had one of those removed as a med student in 1990-found because it was SO huge that I could palpate it externally through my abdominal wall. Then came the US-13 cm cyst!! I was 23 years old, never had any health issues, a med student (so I knew all about ovarian cancer of course) and was facing not only my very first surgery but potentially the end of my ability to have kids as I signed the consent form allowing the gynaecologist to remove EVERYTHING if he found ovarian cancer. Terrifying!! Fortunately he was also a fertility specialist and bless his heart he managed to preserve the ovary and I had kids very easily-conceived on my first attempt TWICE ( despite a diagnosis of endometriosis at surgery)-my husband was not thrilled about not having to try longer!! The fact that you had a major cancer in your teens Jenna must surely play a role in your anxiety and I wonder if it also has a bearing on your current symptoms. I do have one patient who was treated for non-Hodgkin's lymphoma at age 19. She is now in her 30s, married with kids but I am now investigating some abdominal complaints and of course she is teary and stressed who wouldn't be! I have another patient 39 years old just treated for colon cancer and the chemo has left her with permanent burning paresthesias in her hands and feet, which is a potential side effect she was aware of from the start. Given her young age, I encouraged her to do the chemo nonetheless. Could your current symptoms be due to the treatment you had years ago prior to your bone marrow transplant?
If you need the Ativan then use it-personally I hate the stuff, very addicting and you need to be very mindful not to exceed your prescribed dosage. I use clonazepam at night for the twitching and the sedative effects on the advice of my neurologist. Same class of drugs, same addictive potential but I make sure never to go over what is prescribed.
Do what you need to do to minimize your symptoms and just get on with living not worrying.
I examined my daughter's thyroid today-it is diffusely enlarged but I can't palpate any nodules-we'll see what the US shows-most of the time nothing needs to be done-I have a feeling it might be Hashimoto's thyroiditis but we'll see.
Take care,
J

[jebmd]

Jenna,
Sorry, I meant to comment about the EMG-ALS is everywhere in the body. Not all limbs need testing. My neurologist initially only did the right arm and leg-the dominant side and I had symptoms everywhere. If you are clear in one arm and one leg then you are CLEAR. The only exception would be bulbar onset but you would have symptoms of slurred speech and swallowing issues with that. If you EMG was normal then take that at face value. It was NOT too early to check. BFS in a Nutshell provides good information in this regard and my neurologist confirmed this.
J

[Jenna]

JebMD,
I had the same issue with a large ovarian cyst that was found on my first gyno exam when I was 15. The cyst was literally the size of a basketball. The doctor was cutting edge at the time and was able to remove it through laparoscopy. Two other doctors said I'd need to be cut from pelvic to chest bone. Had to take the one ovary too. Couldn't have kids though because of the chemo for transplant. I've wondered if this could be from the chemo from 20 years ago. Just seems so unlikely this would happen now. A big part of me is starting to think this could be tolerance withdrawal to the Ativan. I'm exploring that. Sorry to get off topic, I know this is a bfs site
Hope everything is ok with your daughter.
Jenna

[Jenna]

JebMD, thank you for your reassurance about the EMG and the explanation.
Jenna

[Bibi]

Sorry to break in here , but i Can i ask about EMG and Bulbar onset ? I have Beeing twitching for 9 months , specially in my left foot, but also in back , arms hands and face. I had A clean EMG in left arm and leg 5 months in. Since oktober / november i have A " dry " tounge and sometimes pain maybee BMS , i feel most comfortable When eating or chewing gum . I have no problems with swalloving . Now i am worried that this could be Bulbar onset . I understand that EMG in limbs could be clean ? I know that twitcing is A lower motor neuron symptom so is it Right that You could Twitch in your limbs if You has Bulbar onset ? And it Would be clean in EMG ?

[jebmd]

Hi Bibi,
My understanding (and I could be wrong) is that you can have a clean EMG in the limbs initially with bulbar onset-but eventually, the EMG would pick it up because the disease would eventually involve the limbs. Bulbar onset is only 20% of cases (of an already rare condition) and usually presents with speech and swallowing difficulties and more often in women where speech centres are more developed then in men (sorry guys!). While I was convincing myself that I was dying of ALS about a year ago, I had trouble with swallowing, choked often on food, and found myself slurring words while talking. It got so bad that I purposely started speaking more slowly so that I could properly enunciate my words while I was explaining results etc to patients in the office in the hopes that they would not notice my incessant eye and lip twitches. I still think that I speak more slowly but I think that patients understand better too when I do. The swallowing difficulties resolved after my visit with the neurologist and have never returned. I think maybe I was so convinced that I had this awful disease that I was having symptoms from the anxiety. Anyway, having put all this behind me (yes I really have!!) I do not have these issues anymore and the facial twitches are few and far between. I hope I answered your question.
J

[Yuliasir]

Bibi,
you describe dry mouth, not a bulbar onset of ALS.