Page 1 of 2

Please help- so scared- just need support

PostPosted: December 26th, 2014, 1:26 pm
by Jenna
Hi everyone,
I'm 39 year old female and this all started in early September 2014. I had some numbness in my big toes and also my hands had days where they ached/felt arthritic but not swollen or anything. This would last a couple days and go away.

Then the symptom that really sent me over the edge was I had sudden skin burning sensation /felt similar to how a sunburn would feel but there was nothing that anyone could physically see on my skin. The burning was hell, it was my entire face, down my arms, chest, back, and even buttocks. About a week after these symptoms started, the left side of my face went numb. Thought I was having a stroke so went to ER, CAT scan on my head was normal, released me and said to see a neurologist.

I eventually got in to see a neurologist at a practice that's is both a neurological center and also has an MS center. The neuro examined me (all the standard stuff, walk on toes, reflexes, etc) and said my exam was normal. He did say I had some slightly brisk reflexes. He was somewhat perplexed as he said all my symptoms are sensory and it sounded more systemic (like perhaps lupus). Did some blood work testing for autoimmune disorders, Lyme, etc. All normal. Ordered MRI of head with and without contrast and then later one of the neck without contrast.

MRI of head showed a non enhancing lesion in the left frontal lobe. His nurse called and asked me if I'd ever had a shunt in my head or old brain injury. By this time I was hysterical. I told her no. The lesion was in the shape similar to if i has a shunt In my head i guess that would have left a scar. When I went in to get my official results the neuro told me, we don't know what this is but it's not an old stroke, not MS, and not a tumor but we don't know what it is. It's something he said I could have been born with and he did not think it was the cause of my symptoms because my symptoms are on both sides of my body. He said the lesion was too long to be A Dawsons finger. He said follow up in 3 months and prescribed Gabapentin for the burning.

In the meantime, burning continued, it was miserable and then as the days went on, it would migrate around to just my arms and hands, then my chest, etc. As the days and weeks progressed, the burning seemed to settle into my arms and hands. Doing my job at work was so hard and not knowing what was wrong was driving me crazy. I burned mostly 5 days a week and only got relief when I slept or the occasional day durning the week where I had no burning.

I managed to go sea neurosurgeon oncologist in the meantime that took a look at my MRI CD and also confirmed he didn't know what the lesion is in my head but its not a brain tumor.

In the last month the Gabapentin has really helped (I'm assuming that's the reason) as most days now I don't have much burning or very short lived spurts of burning on occasion. Was also getting cold spots on my legs and feelings like there was water dripping down my leg. There were days i was so cold that no matter how many blankets i had on me, couldnt get warm. i went to see another neurologist for another opinion, clinical exam normal. He did an EEG that he said was Normal except the pack of my head showed activity consistent with migraines even though i dont get migraines.

About 10 days after the last 2nd opinion neurologist, It seems my symptoms are changing to now I recently started twitching everywhere, leg, arm, foot, etc. This started a couple weeks after starting a very low dose of zoloft. One day I actually twitched 24 hours straight on my left butt cheek. I have a strange sensation on right side of face/like a tightness, it's hard to describe. I have many days where my legs are fatigued for no reason or my arms are fatigued or it feels like my leg is about to cramp. I'm afraid to wear heels to work because the last time I did, my leg cramped so bad on the side of my ankle and it took me about a week to recover where I walked with a limp.

Made the biggest mistake ever of going on the ALS forum and started reading about people who presented with cramps, muscle fatigue, twitching. Not to minimize at all what someone with MS goes through, I am no longer afraid of that. I am terrified this is ALS.

Sorry this is so long but the anxiety has taken control of my life as i know many on here are like me, I think of this constantly and feel like I can't talk to anyone about this anymore. Friends and family tell me I'm fine and I'm a hypochondriac, they say the doctors you have been to cant find anything wrong with you. I have also been to a rheumatologist who took a bunch of blood work and ruled out autoimmune diseases. Have had thyroid tested, vitamin levels, etc., everything is normal.

I have an EMG scheduled for Jan 8 with the second neuro. (Upon my suggestion) and am so very nervous.

If you aren still with me and reading this long post, Im just looking for some support and thoughts or similar experiences welcome.:)

Thank you for taking the time to read this.

Re: Please help- so scared- just need support

PostPosted: December 26th, 2014, 1:33 pm
by Jenna
Oh and please excuse the spelling errors in my very long post. :wink:

Re: Please help- so scared- just need support

PostPosted: December 26th, 2014, 2:05 pm
by Yuliasir
we had a fellow here with all over the body burning. She was suffering for two years and finally insisted on skin biopsy. It is appeared she has small fiber neuropathy (of unknown origni, suspected Lime infection).

What you describe is all paresthesias except easy cramping which most probbaly could be of circulatory origin (it often happens to us due to chronic muscle congestions after long term stress).


Re: Please help- so scared- just need support

PostPosted: December 26th, 2014, 2:12 pm
by Scboy
I am not a doctor, but based on your description you can write off ALS. I think the EMG will confirm this is not ALS.
I am in a similar situation except mine started with twitching and morphed into burning neuropathic pain. I've aslso had 3 MRIs and countless bloodwork. I'm seeing a really good autoimmune specialist next week. My neuro leveled with me on my last visit and said there is a good chance we may never find out what I have and I may fall into the idiopathic category like about 30-40% of people with neuropathy fall into. He did say he has seen people slowly get better and maybe the case with me. I know it's hard to explain to people cause there is no test to explain the symptoms.

Re: Please help- so scared- just need support

PostPosted: December 26th, 2014, 4:36 pm
by misterjuanperalta
Side effects of Zoloft include twitching.

Re: Please help- so scared- just need support

PostPosted: December 26th, 2014, 4:39 pm
by leaflea
Jenna, I am sorry you are suffering so. I believe you will come out just fine on 1/8. Please keep us posted. I am only a little confused because you said this started in September 2014 and your profile says you joined this site in 2011. Are you sure you didn't have any odd neurological things prior to this past fall?

Re: Please help- so scared- just need support

PostPosted: December 26th, 2014, 6:20 pm
by Jenna
Thank you all so much for your replies and support, it really means so much.

With my first post being so long, I forgot to mention I also have strange floaters in my eyes that developed during all this, they look like little pieces of lint floating vertically down in front of my eyes. Also get strange goose bump type sensations up the back of my neck and head. At times I feel drool down the left side of my mouth and go to wipe it away but there is never anything there.

I am seeing a psychiatrist who has prescribed the Zoloft for anxiety. The twitches started about 2 - 3 weeks after starting the low dose Zoloft. I just increased it last night to 50mg per my psychiatrists direction. He wants me to work my way up to 75 mg. Only been on it a month. Thank you Misterjuanperalta for the link about Zoloft and twitching, so much appreciated. Hopefully, the twitches are from the Zoloft.

Yulia, thank for the info., I will ask the neurologist for a skin biopsy when I see him on Jan 8. By the way, my mom has the same name as you. We are originally from Ukraine (Kiev). Came to the States in 1979. Are you from there as well?

Scboy, I'm so very sorry we are in a similar boat. It's hard to go about daily life while feeling like you are on fire, at times I questioned my sanity as I felt like I'd be living with burning forever. The burning has gotten so much better and I'm so very thankful for it. At the same time, it's disturbing to have new symptoms. Have you tried Gabapentin for your burning? Are you burning constantly, have you had an EMG? My second neuro told me the same thing, sometimes they can't find the cause and can only treat the symptoms.

Leaflea, when I posted today I'd forgotten I'd posted here before back in 2011. At that time I was having these "rolling" cramps in my legs (would hit one leg, would subside after 20 min to an hour and then hit the other leg in the same place). I also read where I'd said I'd had some minor twitches with it. Cramps would get really "active" for a month or two, then subside for many months and always come back. Maybe this latest leg fatigue and acting up of a certain area around my ankle is part of that issue with the cramping. Only thing is, back then the cramps only happened at night after getting home from work but not during sleep. Now it's if I walk too much like at the mall for just an hour got my legs sore and crampy. Reading that old post from 2011 made me feel a little better that this problem has been going on and off for over 3 years and if it was something sinister, wouldn't I have clinical weakness by now? But then I remember some of the posts on the ALS forum that talked of cramps for years before diagnosis.

The ALS part is terrifying. No neurologist has mentioned that as a possibility but the thought is eating away at me. My grandfather passed from ALS in his late 50's back in the 1960's so I've always feared this disease. Nobody else in my family history has had it that I know of.

Thank you for reading and for your input and support, it feels better to be able to type this out instead of holding it all in.

Re: Please help- so scared- just need support

PostPosted: December 26th, 2014, 7:39 pm
by Ghayes420
Hi Jenna. I actually remember reading some of your posts from 2011. Funny how long we have dealt with this stuff.

Your symtpoms definitely don't sound like a typical presentation of motor neuron disease. So that's good news.
I feel that Yuliasir may have a point with the small fiber neuropathy idea that another member found.

I am very sorry you are suffering so much. There are three symptoms you mention that I can relate to so well.
1.) Twitching, obviously. 24/7 for over three years.
2.) eye floaters in the left eye, not constant. On occasion, very weird
3.) goosebumps like sensations that have gone from Middle back to lower back and from back down into legs. Very weird sensory feeling.

The rest of your sx sound like classic parathesia. I feel like your visit to the doctor in Jan will go just fine.

Re: Please help- so scared- just need support

PostPosted: December 27th, 2014, 1:32 am
by Yuliasir
Yep from the Eastern Ukraine exactly from the battle zone (too much exactly I would say) but now in Kiev.

Zoloft and SSRI in general definitely can induce twitching. I experienced significant increase in them while being on Rexetine but after I had finished 6 month course, they started toreduce and in 3 weeks after course ending they become just a background noise.
Eye floaters in the form of fibers are minor cracks in your hyaloid tissue (part of the eye structure). You had them always believe me (I remember boring sleeping hour in the kindergarten - so I was used to entertain myself by watching them floating in my sight). They are not dangerous, just annoying. neither they indicate any disease. Sparkling floaters may be indication of retina dislocation or bad blood circulation but also could mean migraines, but fibers are usually purely mechanical and tend to increase a bit with the age.

Re: Please help- so scared- just need support

PostPosted: December 28th, 2014, 12:07 pm
by Jenna

Ghayes420, Ha, good that you remember my 2011 post. i totally had forgotten it. :D

Thank you for your reassurance about my upcoming doctors visit/EMG.

The strange sensory symptoms are very disconcerting. After about a good 2-3 weeks with very little burning pain, I've got some break through burning in my hands today. I have to put it in perspective in that its way better than it used to be and for that I'm thankful. I'm taking 4 pills of Gabapentin per day (1200 mg). Have you had an EMG for your twitching?

Was wondering too, since this more body wide twitching is new for me, I was reading that benign twitches only happen while at rest and stop during movement. For the most part, that's true for me but yesterday I was driving and felt some twitches in my right leg while I had my foot on the gas pedal. Is it true that feeling twitches while muscles are in use points away from them being benign?

Yulia, I've been back to Kiev only once since we left when I was about 3-4 years old. Went back in 1989 when I was 14. Beautiful city. I do feel better that the twitching seems to coincide with the start of Zoloft. Just not a good symptom to add when I'm already obsessing about ALS.

Do either of you get twitching in your buttocks and also fatigue or sore feeling in legs, arms, or buttocks?

Re: Please help- so scared- just need support

PostPosted: January 14th, 2015, 9:02 am
by Pinguino
Hi Jenna,

When i read your post it is almost if it my own story.

Last June all of the sudden I've got pins and needles feeling in my hands and feet. In a couple of days I was on fire! Mostly my hands but also my arms and my feet sometimes. It was terrible. I was affraid of MS after google. After a couple of weeks I finally had appointment with the neuro. He did a brain MRI and an EMG scan al lot of bloodwork. Everything was ok. I was relieved and the burning went almost away. Then i noticed twitching in my calfs.. google told me ALS and i was affraid for two months. After reading a lot on this forum I was relieved that it could not be the case.

Since September the burning/tingling/painful sensation is fully back in mainly my hands again and since then i am really affraid of SFN. i also have occasionally dry eyes and dry mouth feeling. And a lot of other strange sensations. I have it every day since then but strangely mostly during workdays. In the evening my symptoms are much better in when i go to bed all is fine again, also when i wake up... later in the day the burning will start.

I still want to go see the doctor again but i am a little affraid of the outcome. I've read horror stories from people with SFN and that there is no cure.

I just want to be normal again, the twitches don't bother me at all but the parethesias are sometimes killing me. It is hard to describe and due to my anxiety history people think it is all in my head.. something i really hope

Re: Please help- so scared- just need support

PostPosted: January 16th, 2015, 7:23 pm
by Jenna
Hi Pinguino,
Wow, kind of unbelivable. Our stories are very similar. I'm sorry you are going through this. I feel very alone with this because my family thinks this is somewhat in my head and the tests I've had (EMG, EEG) were normal and because I have (before all this burning started) really bad health anxiety and I'm sure to my family, I've cried wolf too many times.

I also had a brain MRI and cervical MRI. The brain MRI found a lesion on my left frontal lobe but my neurologist thinks this has nothing to do with my symptoms. My symptoms like yours, started in September. The burning was agonizing. It started when I was driving home on my way to work. Seems like I'd just gotten over or was in the midst of some kind of respiratory bug, felt really strange for few days before the burning started. My whole face suddenly started burning. It was my face and my arms and hands. It's been really difficult to work because sitting at a computer and concentrating on spreadsheets while your skin is on fire is very difficult. There have been many times where the burning hurts so bad that I just cry. I've been very depressed about this because like you, I just want to be normal again. I have had weeks (like 2-3 weeks) where the burning has gone away completely only to always return. Like you, my burning is worse during the day at work and seems to get better at night but does not completely go away at night.

I started Zoloft (antidepressant) at the end of December and it has done absolute wonders for my anxiety over this. My attitude has changed and the panic I seemed to always feel is pretty much gone. The burning is not as intense as in the beginning few months but I think that's just because I'm taking Gabapentin (for nerve pain). It has not gotten rid of the burning but like right now I have burning in my hands and a little on my chest but seems like I can tolerate it better than before. I'm just waiting for the next bout where it goes away another 2-3 weeks. I hope that happens. In the beginning, the burning seemed to be all over the place but 90% of the time is above my waste. It seems to have settled into my hands. And both hands are burning at the same time. I want this to go away so badly but it's so frustrating not being able to find the cause.

I also get other strange sensory symptoms like tingling, sometimes numbness, strange goosebump type feelings on the back of my head, the other day I swear it felt like something was crawling on my left arm but there was nothing there. I also started twitching and have been really scared about ALS so I had the EMG which was normal. It has calmed my fears some but not completely. My fear is not knowing what will happen over time, will this ever go away. The twitching is new, what other unpleasant symptoms are to come. I'm not being a pessimist, I think it's just realistic to think that way. Strange that we can be in such pain yet the medical profession is at a loss to diagnose it and to treat it.

Anyways, sorry to babble but when I read your story, I felt the same as you, it was like I had written it about myself. So have you been to the doctor to try and find out what's causing your burning? I've tried to stay away from SFN sites. If I start reading stories, I don't want to get it in my head that those horrible things will happen to me too. May I ask how old you are? Do you have diabetes by any chance? My A1C is in the pre-diabetic range but I know once I lose about 30 pounds and start eating better, that A1C number will go down. I think my A1C is 5.9 which is pre-diabetic range. But I've also read that being pre-diabetic does not cause neuropathy. I just don't know. :?

Re: Please help- so scared- just need support

PostPosted: January 16th, 2015, 11:20 pm
by jebmd
Hi Jenna,
I have not read all the posts here but I am an MD and have posted here a few times, having been through my own personal hell for the last 18 months. Your symptoms are sensory in nature i.e. the burning/paresthesias. This is not typical of ALS. I also started Cipralex (another SSRI) when I started twitching Sept 2013 and the twitches were so intolerable I had to stop after 4 days. I do have one young patient with burning in her feet that is so intense it is causing pain and sleep deprivation. She has had 2 seizures and will be seeing a neurologist soon. Our working diagnosis for the burning is Chilblain's which has no treatment other than keeping her feet warm. The lesion on your scan sounds like what I would call an "incidentiloma" found by accident just because someone happened to be looking. If several specialists do not think that it is a tumor or MS lesion, then you need to take that at face value. Many lesions in various organs are found by accident and are completely benign. Hopefully your neurologist can reassure you that you do not have anything life-threatening and then you have to set about dealing with the symptoms so that they do not interfere with your life.
Good luck!

Re: Please help- so scared- just need support

PostPosted: January 17th, 2015, 7:19 am
by Pinguino
Hi Jenna,

Very sad story! But it is nice to see that the medications work for you. i do not take any kind of antidepressant or nerve pain medication. When I was diagnosed by Generalised anxiety disorder they told me it was due to my B12 deficiency. And it will be better with the injections..

I also have that strange goosebump feeling in the back of my head or at my back sometimes.

Wel to answer your questions, when my neuro told me that there was nothing to see on the brain MRI and that the EMG was ok, he also said you have to enjoy your life, there is nothing wrong with you and you are healthy. at that point i was very relieved and thought ok this was al in my head and I have to go to a psychologist because i am having Health anxiety. Now almost 6 months later the symptoms are not getting better. I am worried a lot but when I mentally feel fine and enjoying i still expierience the symptoms. So i cannot believe that i am perfectly healty. In about 3 weeks I go back to my neuro and tell him my symptoms and i demand more research. Just want to make sure that I don't have SFN or some autoimmune disease.

I am 33 years old and as far as I know I don't have (pre)diabetes. I also don't know if pre diabetes can cause this..I have had a lot of bloodwork done so I think they must have checked that. 2 years ago when i started to getting really tired and just don't feel ok they found out that I was having B12 deficiency. Since that day I get two B12 injections per week. But I never had any neurologic problems when my B12 deficiency was discovered, the neuro problems started 8 months after they found that out. So i cannot believe that this all this is due B12 deficiency.

I do not take any kind of antidepressant or nerve pain medication. When I was diagnosed with generalised anxiety disorder they told me it was due to my B12 deficiency. And it will be better with the injections... I am still anxious yes, but i am anxious about my healt. not about other things. if i will not have any symptoms i will be anxious anylonger.

I doubt to start with antidepressant.. but maybe it will help me? because most of the time I am thinking about my symptoms and check internet all the time.. I know it is not good but i want to have reassurance, i know you cannot find that on internet but it is the only place i can "talk" about my problems without people telling me that I am fine and nothing is wrong.

i am from the Netherlands so hopefully you understand my text

Re: Please help- so scared- just need support

PostPosted: January 17th, 2015, 9:54 am
by Jenna
Jebmd- thanks for your post. The brain MRI was the first I had ever had. I kind of flipped out when I saw the MRI report where the radiologist wrote atypical presentation for demyelination, could be primary or secondary gliosis. Low grade glioma is unlikely given appearance but is possible. So I focused on the low grade glioma part and have had 3 neurology opinions, one of which was a neurosurgeon oncologist. None of the doctors think it's a tumor including the oncologist. Still hard to believe. They can tell me what they think it's not but not what they think it is. They say could have been there since birth or in utero. Oddly, when the lesion was found, my neuro (also an MS specialist) asked me if I had ever had a shunt in my head because apparently the shape of the lesion is like a scar from a shunt. I've never had a shunt.

My neuro clinical exams are normal. Hard still to get ALS out of my head given the newer symptom of twitching. Maybe it's from the Zoloft as twitching started about 2-3 weeks after I started it.

Was wondering, is there any other type of specialist that you know of that deals with parasthesia? It just seems counter intuitive to try and treat symptoms without identifying the cause. Wondering if I should try and see a 4th neuro at Emory University (also where I had a BMT in 1994 age 19) to see if they are willing to do a skin biopsy.

You mentioned you were in your own personal hell for the last 18 months, is this from twitching?