30 years of this crap

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

30 years of this crap

Postby Moon11 » Wed Nov 22, 2017 7:02 pm

Hi, I’m new to this forum, but not to the group of undiagnosed and frustrated people.

I’ll run this past you, as briefly as I can.

Background: I’m a 56 year old female who was born and raised in New Jersey. I was married 25 years, raised two great kids, got divorced, and now live with a wonderful man outside Yellowstone National Park in Wyoming.

In grade or high school, back when platform shoes were popular, a doctor noticed my right shoe was worn down nearly an inch more than the left. He measured my legs and then told me “pick your feet up!”

Fast forward to 1987, after the birth of my second child. His was a difficult birth that probably should have been a C-section. When the epidural wore off, my right leg remained numb. It progressed to my right arm, and the nurses said I must be holding the baby wrong. (Note I said *second* baby...)

The weirdness faded, but returned later (months? A year? Don’t recall) They suspected perhaps I’d had a stroke from the difficult delivery, and ordered an MRI, which they said was normal. The symptoms faded again, but I had a mild limp now.

I had (and still have) chronic fatigue. One doctor blamed Epstein-Barr, as I had had mono in college. I also have heat intolerance; enough that one doctor wrote a note to the electric company which gave me more baseline (lower rate) kilowatt hours than standard, which allowed me to run the air conditioning more without affecting the bill too much. (In Los Angeles electricity is expensive, and A/C is used nearly year round.)

More problems in 1993, and another MRI. In that one, no lesions were found, but a small benign brain tumor was. (Good job, first radiographer! It was plainly present in the first one!) So that was removed. It was by my pituitary gland/optic nerve and unrelated to symptoms.

This pattern of weird symptoms followed by an MRI and occasional spinal tap continued for years. I also had and continue to have twitches and fasculations and other odd things like that. Each ‘attack’ left me a bit worse; I ended up using a cane because of foot drop and spasticity, and then forearm crutches, and lost my job, and got depressed, but time and again, the first suspicion was always MS, until I was tested. Only one doctor looked further, and tested me for all kinds of things, including tropical diseases and Lyme and other mimics. I was living in Los Angeles for awhile, and was so hopeful when I got an appointment with the head neurosurgeon at UCLA. He patronized me and told me it was “a KIND of MS, and to go home and try to have a good life.” I went out to my car and bawled.

I continued on a slow decline with ‘attacks’ that, when at their peak, would screw up my fine motor skills and speech. At times my legs felt like they weren’t mine, and I had to recite “left, right, left “ in my head when I walked. They’d spasm so bad I’d involuntarily squat. I also had kidney infections a few times, and more frequent than normal bladder infections. I suffered from anxiety attacks for several years, and depression, too. I was only recently diagnosed with adult ADD.

I got where standing became very difficult, and an MRI revealed stenosis. I hopefully asked if that was my problem, but it wasn’t (and wouldn’t have explained the other symptoms) I had surgery to repair it.

My frustration and anger ended up destroying my marriage as I felt like a ball and chain. I gained weight and a bad attitude.

I had good days and bad, depending on what I was doing I could occasionally leave my cane at home for shorter trips to town. Then, for no apparent reason, I had a long string of ‘good days,’ so long in fact that I started walking all the time, so happy I could again. Not perfect, but I was so happy about it, that whatever it was, was leaving me alone, that I planned to finally take an adventure I figured was lost forever: walking from the east to the west coast of the US. I made 1700 miles before my back gave out. My legs had some jerkiness and spasticity but they weren’t the problem that made me sadly have to quit in mid Wisconsin. (I learned how to ride a motorcycle and started the trip over three years later, riding coast to coast.. I have written quite a long book about it that is nearly ready for publication.)

My back is awful now but can’t be fixed, the pounding on the pavement at my age (50 at the time) aggravated it and accelerated degenerative disk disease.

So, the worst I’d been, as far as MS symptoms, for years, was some wonky walking, residual weird leg symptoms, besides the fatigue and heat issues.

Until early October, that is. I bent over from a sitting position and got extremely dizzy. Even when holding perfectly still, like vegging on couch watching TV, I’d suddenly grab on like I was going to fall. I went to the ER and they found nothing odd except slight derivations in my ECG and blood pressure. They ruled out benign vertigo. My doctor sent me to physical therapy and and they too ruled it out. (Besides normal appearing ear canal, they do positioning exercises that should have made me dizzy if it was vestibular, in my ears and balance stuff).

I have not seen a neurologist yet, but will Monday. The dizziness worsens as the evening progresses, so badly that I have nearly fallen several times, I have run into furniture and doorways and only kept from falling a couple times because there was a couch nearby that I could drop my arse on.

My legs have been spastic again, and hurt from it.

I did some neurological tests at home, like standing with my feet together and closing my eyes... yeah not a good idea, I nearly fell each time. Tandem gait, eyes open or closed, another fail.

I will be bringing a few doctors notes from a few different doctors; a couple had checked MS as a diagnosis but never did so “officially,” one wrote “benign MS” and another wrote “progressive relapsing remitting demyelinating disease.”

My problem has been that all the doctors I have been to immediately suspect MS, then run tests like an MRI or spinal tap, but once they see those are clear, they quit looking, like I’m making it up. I would ask, okay, if it’s not MS, then what IS it?” but they’d say “Next!” and that was it. No one looked further. The only good doctor I had did specific blood tests that looked for autoimmune antibodies, or indicators, and found them, but once sent to the neurologist the pattern of ”looks like MS but it’s not so go home.” I also had abnormalities in nerve conduction studies, but no explanation was given.

I am dreading the neurologist appointment because I fear that he’ll blow me off and I’ll blow him away. I know that 5% of people with MS have no visible lesions or bands; and I don’t know why it’s so far fetched that I’m not one of them. I spent decades reading medical journals and about MS differential diagnoses, and the only disease or syndrome that I fit in is MS. Some are semi similar, like CIPD, but I’ve never heard a doctor even mention that.

I seriously can’t go through this again. I was so glad when the symptoms retreated, and didn’t care why they did or what had caused them, and now I am again facing a complicated issue. I live in a small town in Wyoming and the medical care here is nothing like I had access to in California, so I don’t have a lot of faith that this dude will know what to do with me. I am sick of staggering around like a drunk; I don’t even go out anymore, stores are difficult because of both the fluorescent lights and having to look around and turn my head or eyes. If I went to a bar I’d probably get cut off before I ordered my first drink!

I am going to write a brief timeline for this neurologist, and after he examines me I’ll give it to him so he’ll have a better idea of my background and that of this mystery disease.

(I never knew what to tell people when they’d ask why I used a cane, so I found an archaic old word that means ‘an abnormal body condition’ that doctors used back a hundred years ago or so, I guess to describe something they couldn’t put a finger on exactly... like me. The word is Dyscrasy. )

So, I’m not sure how this will play out, but I am going to explode if I’m poopooed and shooed away as a bored and lonely hypochondriac. Why would anyone make this crap up? I used to hike and horseback ride and such. Even with my awful back, at least I had been able to walk a mile or so up until this dizziness started, now I can’t even do that.

Well that wasn’t very brief but I figure you all know that something as complicated as a neurological issue with no diagnosis isn’t something that can be described in one sentence, other than, “Aaarrrggghhh!”

Thanks for listening. Reading, rather. :-)

Happy Thanksgiving.
Moon11
Newbie
 
Posts: 6
Joined: Wed Nov 22, 2017 5:17 pm

Advertisement

Re: 30 years of this crap

Postby Kittie » Thu Nov 23, 2017 2:26 am

Hi,

I was lucky and had insurance that sent me for a private consultation and a lumbar puncture that told me I had MS. (1980 - I was 32yrs. old). I was then put on steroids, which helped with the symptoms, but it made my hair fall out and I blew up with water retention. I stopped taking them and told my specialist. He said it wasn't the steroids but it was funny how I got better when I stopped them.

Never the less I have continued for years looking for the answer to my progressive illness. What I wouldn't accept was the drugs. Been there, done that!! I have always had a good diet. Slowly MS getting worse over the years.

Then I found the Dr. Coimbra Vitamin D Protocol. This Doctor needs a medal!

I started on 31st July, 2017 on vitamin D3 and I am not looking back. To me, and it is everybody's choice, this is the answer. You need a protocol Doctor to help you.

There is a tremendous amount of information on this site and people who always answer your questions when needed. I am sure you will get a lot of good answers.

This is the first day of the rest of your life.

Lots of love,
Kittie.
Kittie
Family Member
 
Posts: 65
Joined: Fri Sep 08, 2017 6:53 am

Re: 30 years of this crap

Postby Snoopy » Thu Nov 23, 2017 6:43 am

Moon11 wrote:I know that 5% of people with MS have no visible lesions or bands; and I don’t know why it’s so far fetched that I’m not one of them.


To clarify; 5% of those diagnosed with MS will not initially present with lesions. As the 5% indicates this is very rare. Even if a person fits into that rare 5%, which I was one of them, lesions will show up on MRI at some point, 30 years without MS related lesions decreases the possibility that MS is the cause of a persons symptoms. Receiving a diagnosis in current times without MRI evidence of MS lesions is even more rare now because the diagnostic criteria (Revised McDonald Criteria) relies heavily on MRI evidence.

The Lumbar Puncture; of those that have a diagnosis of MS and had a Lumbar Puncture(LP) approximately 90-95% will have o-bands. There are those diagnosed with MS that either had a negative LP or never had a LP.
Snoopy
Family Elder
 
Posts: 213
Joined: Wed Apr 13, 2016 11:14 am

Re: 30 years of this crap

Postby Moon11 » Thu Nov 23, 2017 10:11 am

I’m aware, and also that some are microlesions, and doctors need to really look to find them. My issue is that once their quick glance demonstrates that I don’t have (a clinically diagnosable) MS, they quit looking for another reason for decades of a relapsing-remitting neurological disease. If not MS, then perhaps it’s something that can be remedied. But I have never received an answer. There IS a reason, but find a doctor willing to look beyond seems impossible. I hope this new round of crap will bring me closer to an answer.
Moon11
Newbie
 
Posts: 6
Joined: Wed Nov 22, 2017 5:17 pm

Re: 30 years of this crap

Postby jimmylegs » Thu Nov 23, 2017 11:03 am

hi moon and welcome :) tale sounds super frustrating.

questions:
1. any past referrals to dietitian?
2. has any specialist run any of the mainstream (eg serum b12 and more recently vit d3) or non mainstream (eg serum magnesium, zinc etc) bloodwork, to exclude nutritional issues which may a. masquerade as ms or b. which are common to the average patient with ms? is so, can you share any of the results? (ie numbers and units - 'normal' doesn't cut it!)
3. how are you doing right now, symptom-wise?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10784
Joined: Sat Mar 11, 2006 3:00 pm

Re: 30 years of this crap

Postby Moon11 » Fri Nov 24, 2017 11:26 am

Yes, I had a blood panel done, fasting, plus one at ER, and multiple ones over the years. I take vitamin D, since this is Wyoming and we have a long indoor season, and my B12 is good and usually on the high end of normal range, despite being vegetarian for over 45 years. Several years back one doctor ran multiple tests and found autoimmune antibodies (MAG IGm or something) and it showed an autoimmune disease, but as you read, even the top (or so called top) doctors at universities have shrugged their shoulders at me, all saying, “it’s a KIND of MS” Okay, what kind? Ugh. I see the neurologist Monday. I’m not near any big medical center, Billings Montana is the closest “city” to me, 120,000 people, 90 miles away.
Moon11
Newbie
 
Posts: 6
Joined: Wed Nov 22, 2017 5:17 pm

Re: 30 years of this crap

Postby jimmylegs » Fri Nov 24, 2017 12:21 pm

hi ok a bunch of follow up questions :)

1. from the blood panel did they test serum magnesium?
2. if so, what was your serum level?
3. what is the reference/normal range in use for serum mag at your local lab?
4 a. what is your d3 is regimen, and b. how long have you been taking it in that way?
5. how do you balance your d3 intake with essential mineral vit d3 cofactors?
6. what's the reference range for b12 via your local lab?

also, wyoming has some pretty cool spots. major high points from cross-continent road trip many moons ago.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10784
Joined: Sat Mar 11, 2006 3:00 pm

Re: 30 years of this crap

Postby Snoopy » Sat Nov 25, 2017 5:22 am

Moon11 wrote: Several years back one doctor ran multiple tests and found autoimmune antibodies (MAG IGm or something) and it showed an autoimmune disease, but as you read, even the top (or so called top) doctors at universities have shrugged their shoulders at me, all saying, “it’s a KIND of MS” Okay, what kind?


There is no blood test that will indicate Multiple Sclerosis...at this time. Blood work is used to help rule in/out other possibilities. There is no such thing as "some kind of MS" either a person has MS or they don't. Best wishes on your appointment Monday.
Snoopy
Family Elder
 
Posts: 213
Joined: Wed Apr 13, 2016 11:14 am

Re: 30 years of this crap

Postby Moon11 » Sat Nov 25, 2017 12:46 pm

I know, (there’s no “kind of MS”) but that’s what the UCLA neurologist said, so you can see why I’m frustrated. It was a blow off; a patronizing dismissal of my symptoms. I think he thought that I wanted to hear MS, but in fact I wanted him to actually figure out what it is.
Moon11
Newbie
 
Posts: 6
Joined: Wed Nov 22, 2017 5:17 pm

Re: 30 years of this crap

Postby Moon11 » Mon Nov 27, 2017 6:44 pm

Neurologist has ordered MRIs of my brain and brain stem and cervical spine, plus non-standard blood tests for IgM antibodies and other such abnormalities. I ‘passed’ some of the neurological tests, but ‘flunked’ the balance tests like tandem gait and Romberg’s, etc.

Will update if I learn anything. I was just relieved he didn’t blow me off.
Moon11
Newbie
 
Posts: 6
Joined: Wed Nov 22, 2017 5:17 pm

Re: 30 years of this crap

Postby jimmylegs » Mon Nov 27, 2017 7:21 pm

good to hear.

4 a. what is your d3 regimen, and b. how long have you been taking it in that way?
5. how do you balance your d3 intake with essential mineral vit d3 cofactors?
6. what's the reference range for b12 via your local lab?
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10784
Joined: Sat Mar 11, 2006 3:00 pm

Re: 30 years of this crap

Postby Moon11 » Sun Dec 03, 2017 12:39 am

So far I only have the radiologist’s report on the MRI of my neck. Cysts were found, the biggest one 5mm. They are Tarlov cysts, and they am infrequently cause trouble. They could be crowding stuff in my neck but they weren’t listed in the summary; I think they are just an incidental finding. I had an overnight blood oxygen test to look for apne, blood tests and a brain and brain stem MRI with and without contrast, and this weekend is dragging. A normal MRI is going to leave me with no answers...
Moon11
Newbie
 
Posts: 6
Joined: Wed Nov 22, 2017 5:17 pm

Re: 30 years of this crap

Postby ElliotB » Sun Dec 03, 2017 3:32 am

What kind of self treatment(s) are you currently following with regard to diet, supplements, exercise, etc?

Not sure if you are aware but there are about 400 illness that mimic the symptoms of MS, and as you are finding out first hand, a diagnosis of MS can sometimes be difficult for doctors to make.
ElliotB
Family Elder
 
Posts: 1232
Joined: Mon Feb 03, 2014 4:08 pm

Re: 30 years of this crap

Postby jimmylegs » Sun Dec 03, 2017 5:14 am

frustrating stuff for sure.

elliott i have similar questions.

third and final try on two of the most easily answered questions of 6 posted above:

re 4 a. what is your d3 regimen, and b. how long have you been taking it in that way?

d2 or d3 taken? # iu/day? sun lamp? solarized mushrooms????!
days? weeks? months? years????

5. how do you balance your d3 intake with essential vit d3 cofactors?

not at all? any cofactors considered? if so which? doses? forms? timing?????

how paying attention to this kind of thing can work:
general-discussion-f1/topic29623.html#p250969

this link ^ takes you to the happy ending. once there, scroll up for the d3 / mineral cofactor connection.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 10784
Joined: Sat Mar 11, 2006 3:00 pm


Return to Undiagnosed

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service