Re: about my self (long)

[Guest guest]

Hi, Mark

Thank you for sharing your story. I am sorry you had to go through so

much to be diagnosed (partially anyway) , and have many limitations.

But, it is so good for us to share our experiences. Then we know we

are not alone. Then we know that the docs are wrong when they say

there is nothing amiss because the tests they know how to run are

negative. Then we know to just keep looking for doctors who make sense

to us and our symptoms. Then we can look for possible answers and help

from others who have similar problems.

My own history is similar to yours in so many ways. Athletic when you,

but never having any endurance. Yep, about the dancing. Always tiring

out way before the others when doing anything physical. Feet hurting

my entire life. Smart enough, but always had to work really hard to

keep my concentration. Hands never cramped, but my handwriting is/was

awful. Just could not make it neat. Arms always tired very easily. I

thought that came from the spine problems in my neck for 20 years!

Have/had several bad discs, - in the neck and middle back. Neck got

surgery - they can't get at the middle back too easily. Back pain for

25 years, 24/7. Have learned some posture and tricks to make it

livable now. (Also, my talked about weight lifting has helped that

somewhat) I would guess that spinal irregularities will come along

with general muscle weakness. I do think that is part of the source

for my spinal problems/pain. For years I felt it was always a strain

to just keep myself upright. Legs are not as bad. I was always a

walker, and they do not feel as weak. Birkenstock shoes have given me

great support for my feet. Better than the expensive orthotics I wore

for years. Birkenstocks actually mold to our feet the way they are when

we are walking, and the metatarsil arch in them is great. After 2 major

surgeries I felt really awful for over a year each. I am convinced that

something wacked my body really big time there. Don't know if it was

the trauma of the surgery itself, the anesthesia, the Ringer's Lactate,

or other meds, or the lack of physical activity, or a combination of

these things. But, surgeries do not agree with me

Ahh, getting long enough. Just want to say again, thanks for sharing,

Mark. Hope you can find more answers and some help as you look

further.

Take care

Sunny

> OK where do I start, I am a 55year old male, I first

> noticed problems when I was in my teens, when I would

> go to the local dance hall I could not finish dancing a

> fast dance, to drop a name the Bristol stomp and the

> like, also when in Junior high gym class I had muscle

> problems in my arms, I could not do any pull ups, but I

> could do some chin ups, on the track, I was one of the

> fastest runners in school for short distance runs, then

> the legs would quit, also though out schooling I had

> learning difficulty's and problems concentrating, I

> also had a speech impairment, certain letter

> combinations, I could not say, this was found when I

> was 5 or 6, my body build, well you could call me a

> tall tooth pick, I am or was 6' 1' always under weight,

> only gained weight as I got older about 30 or so, now I

> am about 155 pounds or about 11 stones for our UK

> friends, all of this was never looked into because back

> then who had insurance and you only went to the Dr's

> when you were sick. when I entered the work place, I

> noticed my arm would become tired easily and my hands

> would cramp up mostly the thumbs in the palm of my

> hands, I would get cramps in my feet, I also I had this

> problem when I was much younger,

> not sure when I started telling the Dr's about this,

> they would do some simple blood tests, and nothing

> showed up, they had no clue as to what was wrong with

> me, and passed it off, in later years I started to

> complain a litter louder and changing Dr's still no

> clue, one Dr told me to see a psychologist, and she

> found according to her that I had a Dysthymic disorder

> and a somatatoform disorder and a mixed personality

> disorder, after seeing her for a wile, I changed to a

> new Dr, and is Internist, he sent me for some tests

> including a tread mill test, which I could not

> complete, legs gave out, when the results were in, a

> month later I had a 4 way hart bypass, when I got out

> of the hospital I called the psychologist and told her

> what I went though, she darned nearly dropped the

> phone!

> so bye bye miss head DR.

> I was still having problems, so the Internist ordered a

> bunch of flow studies, nothing found, the plumbing is

> fine, let me add here, that the Internist said, he has

> not seen a patient with so many problems, I had given

> him a list of my problems. so one by one my problems

> have been found and treated or just live with them,

> which is nothing new for me as I have had to for a long

> time,

> Enter the Internet, I started looking around for

> diseases, that matched my symptoms, then I found the

> MDA site, and did some looking, Hmmmm very interesting

> as SST Sultz would say, found a lot of thing that were

> close to mine, but not an exact match, but close

> enough, so I bounced this finding/idea off my

> Internist, so he sent me to a Nuro Dr, that specializes

> in MD, Bingo, jack pot!! she thinks that I have a form

> of MD, so after some lengthy exams and tests, here is

> what she has found, they found that my hart skipped

> beats occasionally, I had hammer toes, I had some

> atrophy of the intrinsic muscles of both feet, left

> side weakness, but weak on both sides some 4/5s

> reflexes the same, but the knees were hyperflexic,

> found some polyneuropathy both legs.

> she also said something about me having a Dismorphic

> appearance, some test she did,

> EMG essentially normal but with insertinal activity.

> NCV normal.

> forearm exercise test, ammonia and lactate did not rise

> as it should.

> ordered DNA testing for myotonic dystrophy, type one

> and type 2, both negative but type 2 is very high but

> not over the standard that was set, was the highest she

> has seen. so I am up to a muscle biopsy now.

> she discussed a few types of MD with me and her

> associate, and is now leaning towered a metabolic

> disorder, mitro, my Internist is thinking alone the

> same lines,

> some of my other problems that had been found,

> sleep apnea, Renaud's, (that is a story in it self with

> the arthritis Dr) have a bad disks at L4-5, L5 S1,

> osteoarthritis of the whole spine, disgerntive disk

> disease and cervical spondylosis, these are new

> findings, and my weakness predates any relationship to

> these findings, I had old xrays and reports, also I am

> do for a few MRI's

> back in March this year I had 2 stents placed in my

> hart, and afterwords I felt like I was hit by a train,

> and every car had a shot at me.

> also my last visit to the Nuro, I was much weaker,

> enough for now, film at 11.

> markb

>

> __________________________________________________

>

[Guest guest]

Dear Mark B.,

I am very glad that you seem to have achieved a diagnosis. I am VERY

glad that you called the psych dr. to tell her about your very real

physical problems that were manifesting. Most of us here identify with

you 100%. Along the way, so many of us have been tagged with various

mental labels, and I think this has hurt us very much. It slowed the

road to diagnosis, hurt us to the core, and caused much unnecessary

suffering.

I am glad that you are here, but sorry for the reason. This is indeed a

safe harbor, where truth, freedom to tell one's tale, and tremendous

knowledge and compassion all come together.

Very sorry to learn of your serious heart problems, but it sounds as if

the doctors are being vigilant.

Good luck.

S.

Pennsylvania, US

[Guest guest]

and Mark

, you stated that so beautifully. Every single word has so much

meaning for me, and I am sure many others as well.

Mark, I echo 's good wishes for you.

Sunny

> Dear Mark B.,

> I am very glad that you seem to have achieved a diagnosis. I am VERY

> glad that you called the psych dr. to tell her about your very real

> physical problems that were manifesting. Most of us here identify with

> you 100%. Along the way, so many of us have been tagged with various

> mental labels, and I think this has hurt us very much. It slowed the

> road to diagnosis, hurt us to the core, and caused much unnecessary

> suffering.

> I am glad that you are here, but sorry for the reason. This is indeed

> a

> safe harbor, where truth, freedom to tell one's tale, and tremendous

> knowledge and compassion all come together.

> Very sorry to learn of your serious heart problems, but it sounds as

> if

> the doctors are being vigilant.

> Good luck.

> S.

> Pennsylvania, US

>

>

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