SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
This is my life....
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
521 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

This is my life....

I thought I would post my timeline and see what anyone might have to say about it.  I don't know if it is MS or not.  What I DO know is that it is not Lupus, Scleroderma, Sjogrens, RA or Lyme.  Please feel free to give me any insights you may have!!

2000: This episode happened during the summer and was a Mild episode that included loss of concentration, brain fog, muscle weakness and pain and severe fatigue.  Saw my family doctor who diagnosed Fibromyalgia and began treating me with Fibroplex, Celexa, Vioxx and Zanaflex
2002: In march of this year I began having the same symptoms as before, they came on quickly. I went back into my doctor and he continued the medications listed previously. This episode lasted about 2 weeks and I bounced back fairly quickly.
2003:  October--- same symptoms listed previously, also came on quickly. Saw my doctor again and voiced my concerns that this may be MS as we had a family member (1st cousin) that has MS. He was concerned as well. I could not get an MRI at this point as I had no insurance.  Stopped taking meds previously listed as they were not helping.
2004:
February- recently married, now had insurance, this episode worse than before : severe fatigue, tremors( first time), dizziness, difficulty concentrating, difficulty swallowing, gait disturbance, zoning out, difficulty talking(forgetting words) and bowel problems. New doctor concerned might be MS, wanted to rule out Lupus first. Put in referral to Rheumatologist.

April-  Having another episode, symptoms same as listed above, just as severe. Doctor sent me to Rheumatologist. Rheumatologist diagnosed polyarthralgia, fatigue and Raynauds. ANA was positive 1:640 with a speckled pattern, all other blood work negative.

October- having another episode, doctor noted bilateral shaking in legs, loss of balance, tremors throughout body and failed Romberg test: Also having severe fatigue and loss of concentration and difficulty swallowing. Put in a referral to Neurology.

November – saw Neurologist. Would not listen to my symptoms and said they thought it was Poss Intermittent Claudication with Diminished Circulation  Ultrasounds = Normal , no evidence of plaque formation nor stenosis  Did not seem concerned about other symptoms as they had cleared up
2005: Moved to CA and now seeing new doctors. December - Severe Fatigue, muscle pain, tremors throught entire body, difficulty concentrating, swallowing difficulty, gait disturbance, and memory loss (forgetting everything) new doctors wanted to rule out Lupus again. Put in request for bloodwork.  ANA 1:80 all others normal. Doctors did no follow up.

2007: August – same type of symptoms listed prior, went in to see new doctors (happens a lot with military docs) They ordered Ordered Neck CT: Impression: Normal Soft Tissue Neck Symptoms went away..no follow up Began having problems with bladder function: not making it to the bathroom. Doctor checked to make sure bladder had not fallen and it had not.

2009:
August – same symptoms as listed prior, more severe this time, episode came on really fast. Went in to see doctor, this one also new as we had moved, This episode lasted almost a month, the longest episode I have had. Doctor did not want to put in a neuro referral because he thought it was bursitis.

October- Another episode just as bad as previous one, was able to get a new doctor. Doctor saw how bad the tremors were and put in a referral for Neurology and Rheumatology. This episode has new symptoms: tingling in legs, burning in legs, and squeezing sensation in legs and chest, also total numbness in right leg that would last several hours. Issues talking included not remembering words and stuttering and loss of balance caused me to fall several time.  Bladder function and bowel function not good. Unable to hold and make it to restroom. Doctor ordered forearm crutches.

November: Had MRI  Impression:  3mm focus of chronic white matter ischemic change within the right periatrial white matter tracts  Neurologist stated these are normal aging spots. My doctor did not agree as I do not suffer from migraines, high blood pressure, diabetes or stroke and sent me to another Neurologist

December: saw new neurologist he said spots are from Migraines, but I do not suffer from migraines, told him that, he told me he does not have any answers and that my symptoms do not match MS symptoms. I told him there is a cousin with MS and there may be other MS in family, he still told me that my symptoms are not MS symptoms, I asked about the tremor, he said it is essential tremor, I told him I only have tremors during flare, he still called it essential tremor, I decided to leave.
Saw Rheumatologist: he ran blood work ANA 1:80 all other tests negative. Ruled out Connective Tissue Disease.

2010: saw my doctor told him what Neurologist/Rheumatologist said.  He put in referral for MS specialist and Mayo Clinic.  My episodes are closer together now and I am not 100% after them now…still feeling fatigue and leg weakness, confusion and memory loss are still there, I have to write everything down and even then I forget things. I walk around the house confused as to what I need to be doing.  Bladder and bowel issues are continuing as well.

Sorry it is long!!
Related Discussions
5 Comments
Blank
1137779_tn?1281546105
Ah! Here it is...

My goodness, you poor thing, this has been a real trial, hasn't it? And a definite conundrum.

Your GP sounds very helpful though.

Migraine, mechanical cervical spine and lupus sprang to mind when I first started reading. But these have been ruled out (clear dsDNA?). Are you 'normal for you' between episodes? Do you ever get any headaches? This is all a bit early to be peri-menopausally related, isn't it?

Have you had thyroids done? Whole spine MRI? What about MRAs? Sleep apnoea test? Seen an endocrinologist?

This white matter business is intriguing. Have they talked about TIAs? Or PICA syndrome? Or Addisons (long shot)? or CADASIL ?

The confusion and memory loss could be part of a post-episode cerebral oedema. To me it all sounds like something going on centrally in your brain. I was reading something the other day about the breathing/chest squeezing prob vis a vis the central cord - I'll see if I can remember what/where it was (my memory's a bit wonky these days too!).

When the 2004 neuro said 'claudication/diminished circulation' did s/he localise the spasms?

Any allergies? and have you checked the side effects of the drugs you were taking?

But what do I know? ;-) I've just got a head stuffed with masses of bits and pieces of neuro facts!

Your timeline is great BTW, really easy to follow.

Whatever it is, there's a name for it! Somewhere out there is the perfect label and the perfect treatment.

hope there's something helpful here anyway...
bestest
samxx
Blank
1166523_tn?1264368243
Thank you so much for your response!!  

I do not suffer from migraines, so I know it isn't that.  I had one positive ana 1:640 back in 2004, and they have been positive at 1:80 (supposedly normal) ever since, but when they run the other bloodwork for connective tissue disease they all come back normal. In between episodes I tend to go back to my normal self, except for these last ones, I am not so normal in between anymore, some of the symptoms seem to just carry on into the next episode.
Thyroid functioning is normal, I did see an endocrinologist because they thought it was my thyroid, but he said everything was normal. I had the MRI of the brain and cervical but not the whole spine.

I have not had an MRA(?), not sure what that is, no one ever brought that up. They have never mentioned TIA (?)PICA syndrome(?) Or Addisons (?) or CADASIL (?) . I will have to look those up!!

The 2004 neuro only saw me once, did the tests and told me I was normal.

You have so much information here!! Thank you so much!!  I have a cousin with MS and just started talking to her about 2 months ago after my last really bad episode and she said I sound so much like her.  She is the one that told me to press on and find out what this is.  I know the symptoms are similar to MS, but I also know it could be so many different things.  

Thank you for posting because now I have some other things to look up.  Something to keep me busy for the next week until I see the specialist at Mayo.
Blank
1166523_tn?1264368243
I forgot to mention that two neuros have seen the MRI, one said they were old age spots, but I am 38, so I don't see how that could happen, and my doc said the same thing.

The other said they were migraine spots, but I don't suffer from migraines, I never have.  It is so weird how doctors think different things.

I had help with my time line.  I have never had one to take in and Quix over in the MS forum helped me with it.  It wouldn't have been so easy to follow if she hadn't helped..LOL!

I know someone will figure this out, I am hoping its the people at the Mayo Clinic!
Blank
1137779_tn?1281546105
So glad there's some food for thought. I think personally, I'd want to be making sure cerebral circulation/perfusion is all ok. Also, what DNA tests have they done? There's one for CADASIL (which you really don't want to have - MS is preferable by far). Mine came back normal, thank wotsit.

I know you had a positive Romberg - what about L'Hermitte's and Babinsky signs? Vit B12 and/or anaemia (though latter would surely have shown up on standard bloods)? Friedrich's Ataxia - in fact, you could look up all the ataxias.

The Mayo sounds a great place to go to. And your cousin is right! Keep on pressing for answers - they are out there!

SAMXX


Blank
1166523_tn?1264368243
You have definitely given me a lot to look up!!  My Babinsky was neutral the last time they did it, whatever that means, I can't find anything on a neutral Babinksy!  B12 deficiency  and anemia have been ruled out.  I think I will go look up the ataxias.  Up to this point all I have been looking at is MS because i was thinking that is what it was and so did my family doc.
Blank
Recent Activity
803938_tn?1403751853
Blank
Ecologic commented on mhv's status
3 hrs ago
1204245_tn?1356904325
Blank
898_1 commented on photo
Jul 11
572651_tn?1333939396
Blank
Lulu54 has been on vacation - will... Comment
Jul 05
MedHelp Health Answers