Could this be MS?

[frann]

Hi,
I know you are very busy helping out so many who have found this site ( which I too have found to be a God-send).

I am 54, for the past few years I have been having symptoms that at first I ignored., now can't..
* tripping when I walk, sometmes feel like I need to drag my left leg
*walking extremely slower than usual, unable to keep a straight path
*brain feeling foggy, fuzzy, difficulty multi-tasking
*slow word recall, thought processing
*dizziness, sending me off balance almost daily since Oct.
*burning and tingling in left ankle to foot
* numbness and tingling in the left hand  especially the fingers  
*weakness in both legs when trying to walk up stairs
*weakness in the left arm, sometimes I feel like I need to cradle it
* balance off... as I often call it... feeling like a weeble-wobble
*strange pain in right thigh that extends to the back of my knee and calf- very sensitive to touch
* impairment in visual spatial, visual search  
* extremely sensitive to heat ( have passed out several times in the past few years, so avoid as much I can)
*unable to drive the past few months due to the dizziness, balance issues that occur when I try to turn my head ( difficulty with range of motion)

My symptoms have been ongoing for the past few years but since Oct. the dizziness, balance and the cognitive issues have become overwhelming.
I was under the care of a rheumi for several years for connective tissue disease, antiphosphlipid antibody syndrome. I am taking neurontin, plavix, aspirin, folic acid
I am now seeing a neuro who has diagnosed me with periperal neuropathy
Blood work was normal except for low folic and high platelet count
*Brain MRI- negative (I went to one of the standing MRI's)
*C-spine -severe degenerative changes w/ osteophytes &or herniations @C4-5 & C5-6 casuing a pattern of stenosis
* Lower spine-  can't find the report but i believe it stated herniations of L4-L5
I also saw an ENT for the vestibular symptoms, received some therapy, not very helpful though
Saw a Neuro-psychiatrist for cognitive issues, very concerned, sending me to a neurologist in Manhattan specializing in these issues

Do you think that these symptoms are from the periperal neuopathy?
Could it be MS?  
Any assistance would be so helpful. Thank you!

[frann]

Thank you for reviewing my thread. I wrote down some of your questions... here goes...

My rheum found the antiphosphlipid antibody when he first screened me in 2004. I did have a history of DVT's.. one in 1974 when i was  8 months pregnant and one in 1993 after a leg injury ( i tried to help a student who fainted in the bathroom, used my leg to push door... few days later... leg pain unbearable.. diagnosed & treated for dvt... heparin in hosp/ then coumadin for several months.. never really followed up on it till the rheumi said"you must have an angel on your shoulder... you are at high risk of stroke,etc,... so now since 2004 on plavix/ 81 mg. of asa....so far no dvt's...as for mini strokes... no evidence on mri's but that is what i thought all this was when things took a spiral spin downward in october when the diiziness, cognitivie things became life altering... saw a ENT inOct 2006, had a ENG, here is his findings: "abnormal eng, with slight BPPB in HHR position, indicatingnpossible peripheral or CNS involvment"... thererfore, saw a vestibular PT for several months... no real improvement..
My neuro did  a EMG/ NVS  & that is when she told me i had peripheral neuropathy.  
we are considering a spinal tap... I will discuss this with  the new neuro  i am seeing monday for the congitive issues.

You asked about fatigue.... gee i never wrote that down.... oh yeah... that is such a biggie... i was pretty active but  was seeing changes past few years ( first chalked it up to turning 50) but worse since oct. 2006... that's when my world really changed tremendously... now unable to work/ drive/// thank GOD for my wonderful  husband. He is helping me adjust to this change... some days really takes a toll on me, but prayer, love, family, friends ( now all of you) help me.

GOD bless you all!!

[Abby1981]

http://en.epochtimes.com/news/7-7-23/57897.html

http://www.tv3.co.nz/VideoBrowseAll/VideoAll/tabid/303/articleID/30896/Default.aspx?articleID=30896

http://tvnz.co.nz/view/video_popup_windows_skin/1193703?bandwidth=128k

http://www.tv3.co.nz/News/HealthNews/tabid/191/ArticleID/29322/Default.aspx

http://www.stuff.co.nz/4102374a20475.html



WHAT EXPERTS SAY ABOUT ASPARTAME and ABBY CORMACK


“Tragically, Abby's experience with aspartame is far from unique.  In1985 I first encountered a clinical situation in which aspartame clearly triggered a manic episode in one of my patients. initially made an incorrect diagnosis of bipolar disorder and actually started a treatment regimen of lithium carbonate.  The overall picture however was not totally consistent with bipolar illness, especially as a grand mal seizure accompanied the "manic"episode.  Some detective work as to what was different in my patient's life resulted in the conclusion that the only significant change was the sudden introduction of a large amount of Crystal Lite (aspartame) into her diet.  The total elimination of all aspartame >resulted in fairly rapid resolution of her symptoms.  The lithium was discontinued and she has remained symptom, and aspartame, free. I believe it is essential for all physicians to include a dietary history when assessing patients. Whenever aspartame is found to be included in the diet, I would encourage all health care professionals to educate their patients about the hazards and encourage complete abstinence from this artificial sweetener. In my own practice, I have found that many patients improve substantially with just this simple change. In particular, patients with underlying mood disorders appear to be particularly sensitive to the adverse consequences of this extremely hazardous substance.”
Dr RG Walton MD, Medical Director, Safe Harbor Behavioral Health, Professor of Clinical Psychiatry, Northeastern Ohio Universities College of Medicine, Adjunct Professor Of Psychiatry, Lake Erie College of Osteopathic Medicine.

"Aspartame/NutraSweet cripples the lives of thousands of people.  When I tried to persuade the president of the Searle Drug company, manufactures of that chemical sweetener, to do the tests that would find any dangers it posed before it was marketed he blew me off.  His name was Donald Rumsfeld (Iraq war architect).  In exchanges about aspartame safety with him and his company I learned how little he values human life."
Attorney James Turner, Atty, who with Dr. John Olney tried to prevent approval of aspartame.
Meet Don Rumsfeld: www.soungandfury.tv/Paes/Rumsfeld.html

“I have reviewed the recent experience of Abby Cormack while  chewing four (4) packs of aspartame gum daily, based on her "medical  timeline 2007" -- coupled with the details of her testing and doctoring by interested and competent professionals, and the dramatic improvement of her psychological and most other symptoms following the avoidance of aspartame products.
Her problem appears to be largely due to aspartame disease, as I have detailed in many publications.  I have reported severe depression, anxiety, insomnia, cramps, speech disturbance, confusion, blurred vision, eruptions, and neuropathic symptoms in numerous aspartame reactors consuming both gum and other products containing this chemical.  Fortunately, her mother suspected the cause which had escaped the attention of several doctors. I have admired the great emphasis by persons in New Zealand and its government on avoiding exposure to a variety of toxic substances. The serious documented affliction of this young woman due to consuming aspartame is probably replicated by many other consumers in the country, and warrants the profound attention of its regulatory agencies.”
Dr.  H. J. Roberts, M.D., FACP, FCCP  Named The Best Doctor in the USA by a national publication, author of 1,000 page medical text - Aspartame Disease: An Ignored Epidemic:


"Curiosity about the safety of Aspartame need go no further than the indisputable fact that each molecule of the sweetener turns into a molecule of Formaldehyde when metabolized in the human body.  Enough said!”  
Dr. Woodrow Monte Ph.D. ,University of Arizona, professor of Food Science, early investigator of aspartame, now residing in New Zealand.  


www.dorway.com
www.wnho.org

Contact me ***@****

[Quixotic1]

Hi, I'm Quix and I'm the local, uh, medical expert (within reason).  Welcome.  You do have a list of symptoms to contend with and some unexpected players.  One of the things that I would want to know, and we'll have to ask Tory or Patsy, is how do the LLMD (Lyme Literate MD's) determine that Lyme is no longer active?  Because the immune system has a lifelong memory for some types of antibody.  If the Lyme is NOT the culprit will there be no oligoclonal bands?  What do they use as a benchmark when the person is thought to be adequately treated, but later has neuro issues?

So, we needed you here, with sticky blood, to balance out me with Teflon platelets.  I have the opposite problem - Von Willebrands Disease.  I have Clot Not!  Together we make two people with normal blood.  Was the antiphospholipid antibody found just on general workup or did you have something like a stroke or a DVT?

Peripheral neuropathy is indeed seen with many autoimmune disorders.  How did your neuro distinguish your problem with the tingling as peripheral rather than central?  Did you have EMG/NVS testing?  To what does he atribute the cognitive problems?  Does he think you're having constant ministrokes?

I ask, because as you well know, your symptoms, taken as a whole are very suggestive of MS, which of course we cannot diagnose online.  Your descriptions of how your legs (don't) work is identical to mine.  I drag them and lurch about, swaying back and forth from the balance problems.  I WISH we were WeebleWobbles 'cause THEY don't fall down!  

You need some testing to distinguish where the nerves are malfunctioning - in the brain/spine - or after they leave the spine - peripherally.  Evoked Potentials, nerve conduction studies, possibly a spinal tap.  Have you had an ENG (ElectroNystagmoGram)?   This will help distinguish brainstem dizziness from inner ear dizziness.  In the presence of very suggestive symptoms, but a normal MRI they have to use all of the diagnostic clues that they can find.  Could this be a peripheral demyelinating disease like CIDP?  I don't think that is as likely because the cognitive issues are so prominent, but it's not impossible.

Along with the mental sluggishness and the heat intolerance I didn't see any mention of fatigue.  Has that been a problem.  Likely you've had some with the MCTD, but has it changed recently?  It must have been awful to hear the neuropsych tell you the results of the different tests.  Anyone here feel demented?  Just raise your hands - ahhh - EVERYONE?

I invite you to read as many of our posts as you can.  Especially the new ones, we're answering and dealing with a lot of issues right now.  Also, if you look back a page or two, there is a thread in whcih several of us introduce ourselves with regard to how we came to a diagnosis.  It's called "What I Went Through To Get a Diagnosis of MS."  You can begin to get to know us.

Now, one of my favorite topics:  I believe that people with chronic symptoms or complex illnesses and, especially those without a diagnosis, need to have all their information in an easy to read timeline.  This includes years (months if possible) of onset of symptoms with as much detail as will describe those symptoms and paint a picture in the readers' minds.  Evaluations, testing, with results, How long symptoms lasted and if they went away partially or completely. What diagnosis were entertained.

The reader needs little descriptions of what these symptoms did to you.  Instead of "R hip felt weak"  say " Discovered that I could no longer lift right foot up onto my step stool.  Often tripped with right toe catching a step on the stairs."  Or "Suddenly noticed I could no longer rise up on my toes."  or whatever it was for you.

The timeline should start out with a short introduction to the person you were and what you did before all of these things happened to your body.

One of our members, Wanna (Want to Feel Well!!!) wrote up a tutorial on formulating a timeline.  She describes how having the information inthis form gives you an enormous amount of understanding about how all this unfolded, confidence in talking to new doctors and gives your credibility in a new doc's mind.  The timeline will show any "ebb and flow" of symptoms or show a steady progression or both.  The thread that this is on is called "Timeline 101"  and is a "must read!"  

Well, welcome again, and others will be by with suggestions.  The timeline is importan, though,  Your long list of symptoms is almost overwhelming and doesn't paint a picture of your illness.  In reality, not all of those symptoms occurred or are present all the times.  The dedcriptions of how the appeared lasted and were joined by others as some improved, paints a powerful, and sometimes diagnostic picture.

Quix

[frann]

Thanks so much for all your feedback, Now if i can answer your questions....
I am not sure if it was a western blot/ titer taken in may... just told negative lyme...will check.
I am from NY, yes lots of lyme diesease here.

Under the rheumi care, it was for inflammation of joints, heat sensitivity, diagnosed with mixed connective tissue disease ( i think that was in 1995),  saw a new rheumi  in 2004... surprise! he  found i have antiphospholipid antibody syndrome ( fancy name for sticky blood... so on Plavix /aspirin ...
i really do need to set up a time line... I forget things & takes forever to get thoughts together but with hard work at it... I agree it would be helpful.

thanks again everyone, it feels so good to share with you & learn about you too.

GOD BLESS!

[doni54]

I am very new to this forum and have learned many things in this first week.  I also have most of the same sx as you frann, I am almost 53.  The bobble head thing is interesting cause I haven't heard anyone else mention this as one of their symptoms.  I have had this problem for years also and I didn't even think to put it on my timeline.

I don't know about the rest of you, but this mind fuzz and word dropping really gets on my nerves.  This just started to worsen for me a couple of months ago, I think--ha ha

Hope everything works out for all of you.

Feel Well,
Doni

[sllowe]

Excellent! I'm glad he/she is thorough. . .seems it's the Lab Techs that are diagnosing these days.  Good luck to you too - aaaah PA, we have the same issues in NJ w/ticks, etc.
Be well,
sl

[sllowe]

I'm unsure if that rules it out as the trouble maker (but I wouldn't just quite yet).  I do know that they should run both the titre and the Western blot.  There are a lot of tick borne diseases/illness and I'm not surprised that you had/have lyme disease, with those your symptoms.  I'm can mention that Lyme's (both tests)  was one of the 1st orders of the day w ALL my labs.  To further stress that, they even checked the spinal fluid for lyme's as well.  I don't believe they would of done so, had they not wanted to thoroughly exhaust the possibility.  That being said, they knew of the extent of my symptoms (a lot of what you mentioned) and ran those tests. Do you have copies of your labwork so you can keep track of what has been run? Also, I'm unfamiliar, but the rheum issues you mention, inflamation? Or, arthritus?  

[Want to feel well!!!]

I am still in the pile of the undiagnosed, and my first neuro visit was on July 16th.  He is puting me though, what I feel, is a batch of thorough testing.  His opinion is that one Lyme test was NOT enough.  He runs a minimum of three.  He said they are unreliable and since I lived in PA for several years, he definitely is testing for Lyme again, and again.  

Are you or have you been in an area that has a lot of Lyme diagnosis?  Check out http://www.cdc.gov/ncidod/dvbid/lyme/ld_rptdLymeCasesbyState.htm
and you can see how active Lyme is in your state.

It's just a suggestion if you run out of answers.  Good luck at the neurologist!!!!

[frann]

Thank your reply too...
Yes, i did have lyme disease in 2000. At that time i was having rheum issues, then severe headache, almost had a car accident, was taken by ambulance to ER, found out i had lyme & was treated by oral antibiotics for couple months. Most recent blood work (in May) was negative for lyme. Does that rule that out as the trouble maker for all these symptoms?
As for speech slurring, I seem to have more of slowing of speech, harder time getting out my words rather than slurring.

[frann]

Thank you for your kind welcome.
I do believe my neuro is taking me seriously, she has seen me progressively get worse since i first saw her in 2004.  Besides being foggy headed & my balnce issues,  i seem to have great difficulty with finding words, processing my thoughts, memories.( writing this takes me soooo long, constantly re-writing )

I went through extensive testing by the neuro-psychologist & based on his testing, i did very poorly. It was quite upsetting, frustrating to read the report. He told me that he has seen many patients with MS & he wanted me to follow up with more neurological testing. I am going monday to see a neuro with a specialty in memory disorders. I will let you know how that goes.

Another thing has come to mind which i forgot to mention, on occasion, i sometimes have a slight tremor of my head ( sort of like those toys that bob up & down) it is very slight & lasts seconds. My husband  noticed it, i thought it was just going on in my head.... weird right?
Also, tingling around my mouth has begun, it too, only lasts seconds, whereas the numbness in legs & fingers is always going on.
I guess i will wait to hear what new neuro says,  do you think i should consider seeing a neuro specializing in MS to see what they think?

I will also start to work on the time line, thanks for your suggestions.
God bless you

[sllowe]

I frann.  I know of the slowed sensations, speech, eye, balance (tripping), clumbsy issues you speek of. Not to mention the hand/eye body coordination that you describe when you move your head.  Your Neuro ran Lyme titre and Western blot I'm assumming? Also, do you have any weird sensations prior to the speech slurring? Does it fade only to return within 20 mins, or 30 or no rhyme or reason all day, every day? Asking because I experienced this for about 3 months and it's difficult to describe.

[Want to feel well!!!]

Hi frann and welcome here.  You certainly are not feeling well.  

It sounds like your neuro is taking you seriously and sending you on to a specialist.  What does the new neuro specialize in?  And when is your appointment?

Your symptoms are so much like so many “things,” as well as MS.  Hopefully someone else with more expertise will jump in with more comprehensive help.  

My place in this space has become the forum time line crier.  Have you created a time line?  There are many examples here in the forum and I wrote a "how to" post to help anyone interested in writing one.

Good luck to you.  Hang in there.  

Wanna