Neurology Expert Forum
Neurological Symptoms
About This Forum:

This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Neurological Symptoms

Hi - thank you in advance for a response.  About three months ago, I started having some cramping in my left calf - eventually the sciatic nerve became irritated.  I saw a chirowith no relief and progressive weakness in calf and toes.  Then started the nerve twitching only in that leg.  Over days the nerve twitches "moved" up the left side of my spine all the way to my head and eventually encompassed my whole body.  Along with this, I felt so sick in my muscles (like the worst flu ever) that I thought I was dying.  Now, much of the time the twitches are relentless - and I also have internal buzzing along my spinal cord that affects my internal organs so badly that they cause me dry heaves almost nightly.  (My symptoms are almost always more severe at night.)  I am not sleeping more than 2 hours at a time because my nerves have gotten so sensitive that when they touch anything static for long enough (like the bed) they begin to buzz - so much of my body must touch the bed to sleep that it overloads my system and I start to get literal rushes of adrenaline that wake me up. My arms and legs are becoming progressively weaker and now I have burning under my skin all over my body.  I am basically disabled by this (10 weeks) and have lost 20 pounds.

I have had normal MRI's and Brain scan, normal nerve conduction and muscle tests (but 3 weeks ago and my symptoms are more severe now) -and normal blood tests ... all except for a positive ANA titer of 1:640.  I have seen a rheumatologist but he says that my symptoms don't match Lupus exactly.  What could this be?  Who do I see?
Related Discussions
Avatar_n_tn
The symptoms you describe are very wide spread. The fact that you have had a normal MRI of the Brain is encouraging. An elevated ANA can be a marker of increased inflammation within the body. Other markers such as a sedimentation rate, C-reactive protein, and a rheumatoid factor could also be checked. The symptoms you describe are not 100% typically for this disorder, but perhaps polymyalgia rheumatica should be considered. This disorder results in severe muscle and joint pain and is commonly associated with a loss of weight. Other inflammatory disorders of the muscle should also be evaluated. Certainly if your symptoms are rapidly progressing a second opinion at an academic center is recommended. Seeing either a neurologist or rheumatologist is recommended. Good Luck
20 Comments
Blank
Avatar_n_tn
KAEL,
I hope that we can support each other while going through this tough time. Please stay in touch and post comments ...
First of all I want to answer your questions.

1 - My fasiculations do not get worse when touched or stimulated.

2 - Generally, my fasiculations do not get worse at night. However, I guess I notice them more because I am in bed in a relaxed position.

3 - I just had a blood test done today ( CBC w/ differential ; ESK ; ANA ; Chemistry Profile ; Thyroid functions ; creatinine kinase level ; serum aldo lase level ; Lyme + IGG ) I should know results next Tuesday when my doctor is back in office.
I will keep you posted if you want me to ( let me know ).

4 - I do not have any internal organ problems at all.

I am still experiencing "flu-like" aches and pains in legs and  some hand cramping. The fasiculations are still going on.
I am very scared and confused and have done some crying ( I am not affraid to admit it ). I have a NERO exam on August 8th and a follow up on August 20th. Again, if you want me to I will keep you posted.

As for you, you should definitely see a NEROMUSCULAR specialist in your area asap. I am not sure what part of the country you live in but the following woman at the ALS association in NYC
can help you with selecting an ALS clinic in your area:
Andrea Versenyi - Patient Services Director
Phone # 212-619-1400 x3050. She is a very kind and caring woman.
You may not have ALS but the ALS clinics have outstanding NEUROMUSCULAR specialists.

Please keep me updated by posting and commenting on this service.
May God Bless You and Give You Strength !!!
Regards .... SCRAPPY




Blank
Avatar_n_tn
I can't thank you enough for your heartfelt support and please know I am here for you too.  Isn't it amazing how severe illness changes your perspective on the world and takes you to a deeper level of compassion for others than one would've thought possible?

I see that there are some differences in our symptoms, but still many similarities too.  PLEASE keep me posted.

There is a good chance that my symptoms are actually LUPUS - problem is that they fall somewhere between neurology and rheumatology, so no one really wants to take me on.  I may need to leave the clinic where I am (too bad, cause I love the place) and see some new docs.

I am a 40 year old woman with 5 children who lives in San Diego, California - my kids grandparents live in New Jersey!  If you ever want to e-mail me direct so that we don't monopolize the board - my e-mail address is ***@****.  Please write anytime.  You are in my prayers also.  

Best Wishes,

Kael
Blank
Avatar_n_tn
Just a side note - over the last 3 - 4 weeks, My tongue has broken out with numerous canker sores twice.  Isn't that an indicator of Lupus also?
Blank
Avatar_n_tn
Sorry One last thing - (just want to be thorough). Didn't mention that there are times when all symptoms abate and I feel normal - sometimes for hours even.  Now what it has progressed to is a low level "buzzing" all over my body, from the core out.  Literally every nerve is stimulated.  Is it possible for the immune system to "attack the nerves" this way?  Can it clear up on it's own or is there specific treatment?  Thanks so much again - this has been terrifying.
Blank
Avatar_n_tn
Have you ever thought that you might be suffering from severe anxiety.  Have you ever tried antidepressants?
Blank
Avatar_n_tn
Thank you for your suggestion.  The doctors who have not yet been able to diagnose me have also suggested anxiety as an answer.  Do I know for certain that my mind could not create this?  No.  What I also know is that those doctors do not know me nor do you.  I am a very capable, stable, level headed, 40 year old mother of 5 beautiful children, who has dealt with many difficult situations in her lifetime.  Until this began 3 months ago - I was in perfect health.  Can't remember the last time I was at the doctors.  Was taking great care of myself at the time.  Have I felt anxious LATELY?  YES!  If anyone had going on inside their body what I do in mine, they would experience tremendous concern like I have.  All I want is to feel my normal self again so I can get back to my life.  And I avoid medication whenever possible.  I am not one who subscribes to the take a pill for every little symptom philosophy - but again, I can respect everyone's ideas.
Blank
Avatar_n_tn
Well, I don't know you and because of that I may look at things you have experienced with great objectivity.  Severe anxiety can be the cause of your weight loss, the cause of all the "buzzing" and dry heaves and pretty much all of your symptoms.  Severe anxiety is not your usual anxiety and it can come on at any time without any conscious feelings of depression.  When you start focusing on every movement and pulsation and monitor your body to the extent that your eyes are "inward" rather than out to the world, you can create every single one of the symptoms you mentioned.  When all tests are negative, anxiety can be the real answer.  ALS is a rare disease affecting about 1/100th of 1 percent of the population in the U.S.  The odds of you having that are miniscule and virtually non-existant when you look at your test results.  The chances of this being severe anxiety are much, much greater.
Blank
Avatar_n_tn
I guess what I am trying to say is that at some point if you keep jumping from doctor to doctor and no one can diagnose you then it's time to start believing the doctors and stop the tests.  Sometimes one of the ways to relieve the anxiety is to change the perspective.  It can stop symptoms from "snowballing".  You mentioned that you have a "severe illness" but no doctor has told you this.  Why not think that you don't have a severe illness, that you are not dying and that this could be severe anxiety and that is what should be treated.
Blank
Avatar_n_tn
Lastly, a positive ANA occurs in millions of people who don't have Lupus.  Canker Sores and stress go hand in hand.  Why don't we start believing that you don't have Lupus.  Actually, I am on your side...let's start getting you to feel better. :)
Blank
Avatar_n_tn
HAVE YOU BEEN TESTED FOR LYME'S DISEASE?
Blank
Avatar_n_tn
I really didn't take you negatively, it's just that no one else knows what has gone on in my body.  I'm aware that anxiety causes people to lose their appetites and have problems sleeping, but the way this thing started with me and how it has progressed seems much too chronological to me to be anxiety.  I could better consider that possibility if one day I woke up and had benign muscle twitches all over my body and I was having some type of "panic symptoms" - but mine started as a leg cramp and was that way for many weeks.  Then it progressed to muscle weakness in that leg and foot and it stayed that way for a few weeks as I saw a chiropractor with no relief - I was not in pain, I was not worried - I thought it was simple sciatica.  Then the nerve twitches started, but only in that leg - again, I thought it was sciatica - but when more and more nerves became involved and I began to get sick along with the twitches (pain, dry heaves, everything spasming to the touch) that's where I started to get concerned and I was already two months into this thing.  In fact, I have run a low grade fever during this entire thing and at the most excruciating part of it all, my nervous system was so sensitive that I couldn't drink out of plastic glasses because I could literally "taste" the plastic.  Everything is way too overstimulated.

I now do have an internist who believes what I'm saying and I am seeing another set of specialists to get second opinions regarding what is going on with me.  You are right, many people do have positive ANAs that don't have lupus - what my new doctor just discovered though is that my thyroid hormones as well as my tsh are both too high and she checked me for thyroid antibodies and those are high as well.  I am seeing an endocronologist this week.  Some of my symptoms have improved during the course of this - I don't think with the stress of not knowing what is wrong with me, that my anxiety would have lessened allowing any improvements at all.  And, I did see two psychologists within the last 6 weeks - one who knows me well and one who's never met me, and I also spoke with a very knowledgable psychiatrist - none of them think this is anxiety related, though we all agree that the stress of going through this and being concerned about it has likely not helped me feel better.

At one point I broke down and humored the doctor who prescribed me xanax before I was able to see the neurologist - it did stop the nerve firing, but it did not do anything for the stomach sensitivity, my ability to eat, my dry heaves or my sleeping.

I still believe that something physical is at the root of this - and what makes sense to me (though a doctor I am not) is that my immune system might be attacking my nerves. I don't know.

I don't for a minute think that I have ALS because my symptoms don't match exactly and from what I've read it does not develop over a couple of months to the extent that I've experienced these sensations.

I was asked about being around ticks and any rashes and couldn't recall the possibility. I'm not sure if they actually ran a blood test for Lyme disease.

I do now have muscle weakness due to the constant firing of the nerves (and I don't mean just an occasional twitch - I mean hundreds and hundreds at a time for hours on end) that I don't fully recover from.  I have tried to participate in my normal activities to the extent that I can (which has been severely limited), but my life and the life of my entire family has been turned upside down by this.

Thank you for responding once again.  I do appreciate your feedback.  I welcome your comments.

Kael
Blank
Avatar_n_tn
Kael,

I understand exactly what you are going through. I am a RN and have been experiencing weird symptoms for the past 2 years. I haven't felt myself for two years.
It started with a responce to alcohol. The following night my heart would pound, I would have trouble getting a satisfying breath, I would get myoclonus at the point of sleep, occasional muscle twitches, and the feeling like I need to stretch my body.

Two years later I get the same responce to alcohol, if drinking too much. My skin sometimes burns. I occasionally get the stretchy muscles feeling. I have trouble getting a satisfying breath, I need to yawn to get a satisfying breath [usually works but not always...super frustrating]. I have lost muscle mass.might be because I'm getting older.but 33????? I get fine muscle twitches occasionally, usualy at rest and at night.
I've altered my diet completely.although I always ate well. I am now taking fish oil [1 month.who knows]
Enough about my symptoms. The response to my complaints from Doc's are disturbing. I have seen specialists neuro 2 visits [they don't know] Endocrinologist [baffled] allergist [I have an allergy to pecans...........but consumed a pecan pie the other day without even an itchy throat, 3 internists, dermatolgy  [for the burning skin and white dots [benign" follow up with internal medicine]
The overall concensus is I'm healthy and maybe I have an "auto- immune glitch that will one day go away, try an anti depressant." I also got "when will this end, we have done plenty of tesing"
I would love to consider myself healthy but the problem is I don't feel myself. The trouble getting a deep breath is getting worse. When will it end.........well I'll tell you. WHEN I GET AN ANSWER. I have one life, a wife and a new baby I want to be myself again.
Sorry about the long response but I know what your going through. Maybe we both need an antidepressant to  get through this. One Doc told me I was way more stressed than his average patient. Well I'm sure they have a diagnosis.
All the best to you and I hope you  find an answer.


Blank
Avatar_n_tn
First of all, Muxy, thank you for your understanding and compassion in response to my frustration of those who suggest this is all in my head - unfortunately, it is all in my body.

To let everyone know, I did see a second neurologist today - and liked him very much.  He was a great listener and very thorough in his exam.  The good news is that he said my refexes and strength are great - whew!  However he was able to visibly see my tremor and some of my 'twitches' - he said in no way does he believe that this is simply anxiety, however, my symptoms as they are do not meet the criteria for simple diagnoses.  Since my appetite has improved much over the last two weeks and I am beginning to sleep better, he believes that this is one of those inexplainable things that he sees from time to time (as all doctors do) that he believes will just continue to steadily improve and I may never know what caused it.  He also said that people who present with strange neurological symptoms like these frequently have positive ANA titers - and he believes that is more than just a coincidence... and it suggests a physical root to the problem.  How nice to be respected by a doctor!

I do see a second rheumatologist tomorrow and at that point, I will have completed my second opinions which I felt necessary.  The neurologist I saw today said that he would have done exactly what I've done also.  Very validating.

I also saw an endocrinologist today because my thyroid panel is way off - he said that that could be a contributing factor to some of my symptoms as well.  So he changed my meds and we are in a month long trial and experiment phase.

I will post again for those interested after tomorrow's appointment.  I hope that anything I've gone through is helpful to someone else out there.

Kael
Blank
Avatar_n_tn
Been reading this thread with great interest.  I am experiencing weakened muscle feelings and various painful areas varying from my buttocks down to my feet -- not all at the same time.  I have been speculating whether it could be holdover problems from taking at one time or another almost the whole family of statin drugs with adverse reactions involving my legs and arms.  Have you been on statins?  I do have T2 Diabetes also with blood sugars running a bit too high due to a sweets jag that I have been on for a few months.  I have had diabetic neuropathy in my toes early on in my diagnosis, but that has abated through the years and I no longer take a mild tricyclic trank that eased that problem.  I had earlier on suffered from myoclonus in legs and arms, but that to has stopped.  More recently I have awakened with charley horses in my legs, not often, though.  I am very interested in the statins possibility with you.  People who had Baycol prescribed for them have long lasting, possibly permanent impairment of muscular tissue from that drug.  My sister can take Lipitor (a statin) and within a couple of weeks of any of the statins, my leg muscles start to ache and twitch.  Good luck on your search,

Leif
Blank
Avatar_n_tn
Hi Leif - I am completely amazed by how many people experience 'unexplainable' neurological symptoms - before this happened to me, I never knew about any of this.

To answer your main question, no I have not been on any statin drugs - or any drugs really that might have been a trigger for this.  The only thing I did differently right before this came on was to use some natural, bioidentical progesterone and testosterone creams for low hormone levels -(but I stopped as soon as I started not feeling well)  - and I was using a soy supplement in a protein shake each morning (all for perimenopausal symptoms).  Beyond that, I can't attribute this to any meds.

I did see my second rheumatologist yesterday, and he too was perplexed, but did definitely believe my symptoms were physical not mental in nature.  He said that because I am such a detailed communicator and so in touch with what's going on in my body, that could have worked against me with my other doctors because most patients are much more vague in their descriptions.  Not me, because this is so unusual that it scared the **** out of me!

The good news is that I am feeling better and better day by day - though still dealing with symptoms.  My appetite is basically normal again and I am no longer loosing weight.  My sleeping is much better - though I was up for a while last night and had those 'surges' early in the morning today for the first time in almost a week.  I don't know whether to attribute either of those things to a raise in my thyroid med by the endocronologist or not.  To early to tell.  That's the only variable that's being changed right now though.  I will continue to post updates if anyone else who is searching for answers can benefit from my insights or experiences.  And please - anyone else respond.  I have found other forums with posts from people who's symptoms match mine almost to a T, but they are from 3 or 4 years ago, and the people never came back on to update or share how their case came out and there is no way to contact them.  Anyone with info or experience similar to mine, please post.  I want to hear from you!

Thanks,

Kael
Blank
Avatar_n_tn
I have had so much "weird" stuff going on for so many years that it is hard to remember all the various things.  It most all boiled down to a severe methylb12 (methylcobalamin) deficiency that went on my whole life.
Blank
Avatar_n_tn
Just got back from my Primary Care Physician, he ran some neuro tests and gave a preliminary diagnosis of a TIA.  Am scheduled for a brain MRI, 8 Aug 03.  Hope that is all it is!!

Leif
Blank
Avatar_n_tn
In 2002 after taking Lipitor for 5 months I developed sciatica. I stopped the Statin in August 2002 and by February 2003 my sciatica was gone and I  enjoyed walking again. My doctor persisted  with advising me to take statins to reduce my cholesterol and suggested I try Crestor. After being on them for about 6 weeks in August 2003 I developed a much worse attack of sciatica. This involved a hospital emergency visit, 2 crutches for 2 weeks, followed by a walking stick for 2 weeks. I am now recovering though I still have some paralysis in my legs and feet, though fortunately the intense pain of the first weeks has gone. I am convinced that statins have some effect on the nerves.
Blank
Avatar_n_tn
In 2002 after taking Lipitor for 5 months I developed sciatica. I stopped the Statin in August 2002 and by February 2003 my sciatica was gone and I  enjoyed walking again. My doctor persisted  with advising me to take statins to reduce my cholesterol and suggested I try Crestor. After being on them for about 6 weeks in August 2003 I developed a much worse attack of sciatica. This involved a hospital emergency visit, 2 crutches for 2 weeks, followed by a walking stick for 2 weeks. I am now recovering though I still have some paralysis in my legs and feet, though fortunately the intense pain of the first weeks has gone. I am convinced that statins have some effect on the nerves.
Blank
Continue discussion Blank
Blank
Request an Appointment
MedHelp Health Answers
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
Apr 16 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank