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i'm 50 yr old woman who has had progressive health problems for 3+ yrs. still, no diagnosed. aaah. before then, very active, athletic, no health problems. earliest symptoms: difficulty remaining standing even for a minute - needed to sit, squat down, bend over, take weight off lower legs, lean on counter/furniture, lay down. intermittent weakness in arm/s or hands. at times want to put my arm in sling, hands clumpsy/uncoordinated.
stiffness in limbs as well. often after waking, couldn't move, felt like i needed a crane. walking in am often stiff/zombie like. (strength in mid-section normal). In first year and half, no pain except very sporadically intense muscle pain in neck/shoulders. brushed it off to stress but at time no unusual stressors in my life and this was one brutal pain that would go from base of head/down neck and across shoulders, like having a migraine in yr neck + rigidity and stiffness.

Primary complaints now about 3 yrs in are: leg weakness, pain, stiffness, numbness and pins and needles. i have pain in lower legs on average 4-5 hrs a day. it's terrible muscle pain in calf, or diffuse pain that is symmetrical in both legs, or pain in shin etc. as a result can't find a comfortable position, sitting difficult, best is to be in semi reclined position. sometimes i tightly swaddle my legs in a cotton blanket or if muscle pain is bad wrap Velcro ice pack around lower leg. pain/weakness causes an exaggerated limp at times. drag foot at times. despite significant weakness, I haven't had falls. I can squat down, sit down. I'll sit anywhere. I use can 30% of time.

I also have muscle weakness inside front of neck and throat. it's 24/7 and i'd say very painful 7 hrs a day. feels like anatomy is stiff, rigid, like rigamortis has set in. Tight/stiff muscles. at times difficulty speaking. i can emit volume but too weak and can only say a few words. clear my throat often. while pain is inside front of neck at times i can feel it if i turn my head or touch area. (have had thyroid biopsy, scope of throat, MRI neck etc) problem with neck and throat started about 10 mo ago and at first was pretty minor cough, occasional sore throat. this ain't no sore throat anymore. it's often excruciating. I also have mind boggling pain in inner ears.

when pain began, about 1.5 yrs ago it migrated to different areas of body - almost everywhere except abdomen. the pain currently is only a problem in neck/throat, legs, feet, arms (but usually more fleeting) and upper chest. feeling in upper chest is more like tightness/muscle weakness.

Misc other: difficulty with stairs, muscle tremors when laying down, tongue gets stiff in back like a cramp.

i understand those with PLS have brisk reflexes. I have brisk reflexes sometimes but other times normal. sorry to ramble and be so long-winded. i realize PLS effects people very differently - doesn't any of this resonate. i'm beyond frustrated and lost. i've tried muscle relaxants no effect and currently taking pain meds but desperate to get to bottom of this. haven't worked in 1.5 yrs; can't do much.
oops mistake in lst thread "feel lost

oops just reread first line of thread.
it says still no als diagnosed?
that's a weird typo. meant to say still no diagnosed.
hi apple,welcome to the forum.
though i can relate to some of your symptoms in all honesty i could not say it sounds like pls..........your symptoms could be caused by many things.

pls is a clinical diagnosis based on clinical findings indicating umn dysfunction when no other cause can be found.
clinical findings are..........hyperreflexia/brisk reflexes,positive babinski,clonus,myoclonus and positive hoffmans indicating loss of balance,ataxia/co ordination problems.

symptoms are.........muscle stiffness and spasms which in time (over years)results in muscle weakness though sometimes clinical weakness in an extremity can be found on first neuro appointment,abnormal movements caused by clonus/myoclonus such as a limb twitching,poor balance and co ordination,abnormal gait usually stiff/spastic but it can become more waddling as weakness increases.
as for bulbar,slurred speach when tired or like myself attaxic speech,some difficulty with swallowing due to spasticity as well as spasticity and weakness of chewing muscles.

usually you start of as limb onset,rarely bulbar onset and symptoms spread upwards over several years.

what tests have you had done? what was the results of your clinical exam?
more information on these would help us to help you more.

as for your other post if you put in d*x it will come up with the als* before it sometimes,no worries.
take care.
What ideas have your doctors been working on? What testing have you had done so far.?
i've had soo many tests, mri spine, brain, neck; emg...
seen a slew of docs; feel like my neurologist who i've seen for 15 mo is on verge of throwing up is hands. pain disorders are ruled out given other features and since pain was not a characteristic early on. two docs hv said maybe a motor neuron? when i have outside consult they typically suggest another test. the primary symptoms presently are lower leg weakness, pain and numbness (hv had lower leg weakness for 3 yrs), significant problems with throat and neck. this is newer yet debilitating. i do not slur speech except very rarely and only if tired. the main issue in throat and front of neck is severe pain and some difficulty swallowing. also weakness/stiffness arms. sorry i'm repeating myself. i don't have babinski so that and other may possitively rule out PLS. don't know what my next step is. suggested by doc (not my primary doc) that i have mri thigh and muscle biopsy by specialist but...? thanks again for yr input.
First, have a big hug. Whether you have a MND or not, we've all sat where you're sitting, and we know it sucks.

Ok, so honest truth time: 3 years is just not long enough to diagnose a test-evading neurogical condition like the one you're describing. I know it feels like an eternity to live with it, like I said, we've been there, but it just isn't. If you hadn't mentioned any symptoms in your arms, I'd say you don't sound too atypical for someone with HSP. (HSP is a motor neuron disease like PLS, but mostly in the legs with just a few upper body symptoms at most, but it regularly causes minor sensory problems in the legs as it is more prone to "collateral damage".) But even if it is, the average time from symptoms to diagnosis for a HSPer with no family background is 10 years. Even PLS diagnoses are tentative for a few years.

So where does that leave you? The most key thing your doctor can do for you in the meantime is to write about your symptoms functionally. If you need a handicapped parking permit, it doesn't have to say "PLS" or another disease, "spastic quadriplegia" does just as well. If you need a walker or a wheelchair payed for by insurance, same deal. If they can't find and name it, it means they can't treat it, so you wouldn't do poorly by simply treating it as a currently incurable problem of some sort and organizing your life as if this is so. I was in a wheelchair for 4 years before diagnosis, and they were great years. It would have been a shame to wait for a formal diagnosis.

So what can help you around the house? How can you most comfortably do your hobbies and necessities? What kind of assistive tech could help? If your speech problems are interfering with your life, ask for advice on how to set up an ad hoc speech device. If your leg problems are, pick whatever fits your life best: cane, crutches, walker, wheelchair, etc... and again, there is plenty of advice available. There are techniques for just about any activity of daily living for people more disabled than you are.

And as the years go by, things will clarify themselves one way or another. But I'd urge you not to spend those years focused on a diagnosis. If 15 months of neuro tests haven't shown it out and they are just guessing motor neurons, you're in something for the long haul. Living now means a lot more than having a cool name to tell people.
apple,as beky said for many of us it has taken years for a 7yrs.

you mention alot of pain in the front of your neck.........just above the shoulder blades?
this type of pain is classic in fibromyalgia,it can cause wide spread pain muscle stiffness and spasms.
have you seen a rehumatologist? was this ruled out?
you guys r the best. thank you so much!
not be focused on finding diagnosed i think is really how i must and want to live.
from most people in my life (all v well-intentioned) it's been the next doc will figure it out. and for a long time that was my belief as well.

i can't bear to chase a diagnosed, to see another dr. it's not just that i've exhausted + my financial resources but i can't emotionally bear to see another doc or rather obsess about finding the answer. i truly believe it's about shifting my perspective.

i've had a handful of misdiagnosis along the way - fibro one of them. this is still on my very short list and possibly should be re-visited. i do worry about being dismissed - all in yr head - which is more prevalent i think the longer one goes undiagnosed. i'll need to apply for disability unless i miraculously recover pretty soon and unlikely i'll qualify without a diagnosis. beky, i loved what u wrote that you were in a wheelchair for 4 years undiagnosed and they were great years. that's such an inspiration!
What Beky wrote was spot on. I like many of us have been and still are searching for a diagnosis that fits the box. Having a working diagnosis pf PLS did huge things in helping me, move on and get away from the diagnostic nightmare. After the muscle biopsies I had had enough. A new dr said that it could be PLS so we will treat it as such until a better option may appear or it may develop into ALS. So a few years of observation and regular EMG if indicated.
What was helpful is I joined the MND association and got busy on the committee helping others. I can no longer work many hours, but can achieve heaps in bursts.
As my signature says, " it's not what you have, it's how you deal with it" excuse the stupid bit I added in the middle of the night when I couldn't sleep :(
I am in a better framevof mind this morning and not so self indulgent.
It's been a joy talking to you
disability benefit is for the disability not for the disease or its name.
i went 5-6yrs without claiming because i thought without a diagnosis i would not get it,then a pt i had said i would.
put in the forms and got it.
though i do believe they need enough medical information from your neuro to back up your claims of disability.
diagnosis has completely come for me in a way that does not set it into stone. My GP doc is convinced that its pls, a new neuro doc was the first to suggest that it might be that. They both sent me to Mayo clinic in florida and I got a very newbie doc who scratched her head and the supposidly 'experienced' doc she called in did a sloppy exam and ordered tons of test. All came out ok except the EMG and they still were scratching their heads when I left...with no answers or diagnosis written on paper. Since they didn't order a biopsy, my doc did and it proved that I had muscle wasting caused most likely by UMN disease. Yet still nothing written on paper.

All the above happened within the past 2 years. I have been stuggling with this for about 20 years and have seen specailist after specialist off and on throughout the years. Diagnosis will not change the way I am being treated now that I found a doc who will treat me as if I do have pls. Muscle relaxers help minimal, the power wheel chair has given some of my life back. Walking with 2 canes is becoming more difficult now that my arms are loosing their strength. Living life to the fullest of my abilities is a must!

We just started a new business so we can work from the home. I am 52 years old and this disease will not get the best of me, which is my faith and my family. As for disability, I have wondered about it recently since my hubby suddenly became unemployed for the first time in 35 years, but I decided that I should try and put my energies into something that wont be gone tomorrow (hopefully).

I've had fibromyalgia for over 20 years. Only now is it being taken seriously by doctors--and certainly not all of them by any means. Lyrica can help if it IS fibro.

I hate to disagree with Olly, but in all the years I've had fibro--I've never talked to ANYONE with pain in the front of their throat as a symptom. Definitely not one I've ever had. Pain in shoulder blades? Certainly! Pain near all my joints? Definitely. Weakness? For sure.

But--there are some things easily ruled out:

B-12 (and both tests--one that checks the levels and one that checks the body absorbing it properly.
Potassium levels (likely already checked)
Barium swallow to be sure it's not something in your esophagus. Do you have GERD? Left long enough-the acid literally erodes the esophagus and can cause severe pain.

Your age--if you're in your 50's with pain in the calf--you should always be evaluated for a possible blood clot. That's the classic place for pain to present.

Fibro is now thought to be over-active nerves--hyper sensitive to any painful stimuli. I find things others would think of as mildly painful very painful for me. (And at least my neuro DOES believe in it, as does my new pain doc)

People with fibro have poor stage 4 sleep (I could cite the studies if I had the energy--which I don't) During my sleep study, for instance, I had ZERO time in stage 4 sleep. Nada. Zip.

My fibro was diagnosed by Mayo clinic. My symptoms were so severe at the time, they told me it was the worst case they'd ever seen. At the time, my legs were swollen almost twice their size. Walking was severely painful. Touching me was painful.

If an EMG/NCV has ruled out nerve damage, then the sensory pain (numbness and tingling) can be B-12 or problems in your spine somewhere.

Lots of things needs to be ruled out.

Sounds like you really do need a full workup. Blood tests to rule out things. It took two years before a doctor thought to check my B-12 level.

You'll have better luck with continuity of care. Going from one doc to another makes it hard for any of them to find a clear picture. start with your GP and let that doctor do any needed referrals.

If all else fails--find a pain management doctor. If it IS fibromyalgia, you'd be noticing poor sleep most likely. And pain would need to be above and below the waist.

CRPS is also something that can cause pretty severe pain.

In PLS, and others will correct me if I'm wrong, the pain is felt from the spasticity--and it's not pins and needles type of pain.

I hope you find some answers.
There are at least 11 of 18 specific areas called tender points on the body. The pain experienced when pressing on a tender point is very localized and intensely painful (not just tender). Tender points are found in the following areas:

• The left or right side of the back of the neck, directly below the hairline.
• The left or right side of the front of the neck, above the collar bone (clavicle).
• The left or right side of the chest, right below the collar bone.
• The left or right side of the upper back, near where the neck and shoulder join.
• The left or right side of the spine in the upper back between the shoulder blades (scapula).
• The inside of either arm, where it bends at the elbow.
• The left or right side of the lower back, right below the waist.
• Either side of the buttocks right under the hip bones.
• Either knee cap.
(Some people also experience tender points at the bottom of their feet.)

----------------- taken from the athritis society website and is also on other fibromyalgia websites.
Exactly, Olly

Still lots of docs do not think fibro is real. It's also often diagnosed when they just have no answers.

I'm with Beky on doing whatever it is you need to do to function. I was using a walker long before doc said I had to. Cane before hands became too weak to hold it. Problem comes when they find no answers and any assistive devices are out of pocket due to no diagnosis which sucks.

If EMG/NCV were normal, how was B12?
Hi, I've been away from the forum for quite some time (long story there), but did want to respond.

I was diagnosed with PLS last December - but only after what has been years of confusing symptoms - likely my diagnosed was clouded and made more complex by back surgery and associated (severe) leg pain. But after - what seems to be thousands of dollars of - testing (EMG, myelograms, CT, bloodwork, et al), I now have a diagnosis of PLS. The funny thing is that I've also developed syncopal episodes (unrelated - I think anyway!), and now they want to refer me to another neuro in order to get yet one more opinion (from someone who doesn't know either). In short, the diagnostic process can wear you down very quickly - it costs a lot of money....and then when you're through it all, they STILL can't say for certain that you have PLS, ALS, or other (unless you have a gene mutation - and DNA testing costs a MINT)!

I'd agree that the best barometers are spasticity, Babinski, knee hyperreflexivity, clonus (I have knee clonus)....I had left hip weakness early on (related to PLS? I can't say for sure)....I had negative EMGs, negative this, negative that....I cannot have MRI because I have spinal cord stimulator - which I've decided to keep, as it helps sometimes. I have some upper arm pain and tiredness, but the biggest problem in my life is with the feeling of (what I can only describe as) fullness, pressure, pain in my lower legs - often upper legs. It's not a sensation that I'd ever felt before in my lifetime....except when I ran a marathon in 1998.

I have a great neuro - but he doesn't know for sure. He works in a high-volume city practice --- and is better than the neuro I saw at one of the major centers in the United States. He was the first neuro who asked about my mental health (he didn't do anything about it per se, but at least he asked)!

....and a year from now, they'll probably tell me that I never had PLS....I really doubt it, but they very well might -- because they simply can't say for sure! :)

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