Status
Not open for further replies.

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi,my name is caroline and i live in the uk . ive been ill for 8yrs . i was 31 when ibegan with severe muscle spasms in my legs,fatigue,hyperactive reflexes and twitchings that come and go,also alimb or oneside of my body twitches (clonus/myoclonus)mri was normal, ithought it was ms for many years.2yrs ago my health started to go down hill.muscle weakness of my hip girdle and legs is bad(walking,climbing stairs,getting out of a chair ,even standing).my balance is terrible and im getting more and more fatigued on a daily basis,i also have bad insomnia. 1yr ago i started with minor problems swallowing and my speech is slurring more. ive had hypotension with some blackouts and despite a blood test showing my salt levels were ok my neuro said i need to increase my salt(looked on webb and said mnd effects pottasium and sodium channels) i had another mri done a yearago was ok,had tests done for other stuff plus genetic tests all ok. last year during a neuro exam found i had loss of muscle tone(hypotonicity)is it definitly a lmn sign? if so i have umn and lmn signs.no atrophy as i am aware of but i have lost over a 1stone in past 2 months.my shoulder joints are boney and past month are in pain and my right hand has got worse with dropping things and cramp in it if i use it too much.my neuro said last november theres worse things that dont show up on a mri,there is definitly something wrong but stay posotive.(yeh right!).i know he suspects mnd because he said it is something effecting my mns but he wont say what.igo back in april and im going to ask for emg .does anything ring a bell?.is hypotonia a definite lmn symptom? if i have spasms,hyper reflexes and hypotonia in a limb is it u+l mnsymptoms combined?(a clinical d iognostic factor in als
i cant understand 2 contradictory symptoms in my legs otherewise.i need closure to this im tired and need help and support.please help if you can (only those with a diagnosed and good knowledge to reply) also considering it could be pls(do you get hypotonia with pls?)
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi , its me again. idont mean to be awkward about replys but there is alot of wrong and conflicting information about and i need real answers. alot of people get weakness and twitchings and think they have als. this is the last thing i thought i had and its only after 8yrs of tests to rule out everything else and definite neuro signs, deteriorating symptoms(slow till 2yrs ago)that it is now suspected.
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
Welcome to the boards. You will find many caring and helpful people on this site. For now, you are doing what you need to do by seeing a neurologist. Yes, the waiting game is very difficult because we want to know what we have. Of course, you have been at it for 8 years, which is quite a long time. Hopefully, after further testing, the news for you will be good.
 

mamaoftwo

Distinguished member
Joined
Aug 16, 2007
Messages
224
Reason
Other
Country
US
State
NY
City
larchmont
Olly - if I am reading your post correctly, you've had symptoms for 8yrs but are only now about to have your first EMG? How is that possible? Most neuros run all the tests up front, esp, if you are having weakness and other MND type symptoms. Very strange. I hope you get some answers soon but I would be surprised if it were MND. 8 years is a very slow progression.
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
i dont know, had nvc a few yrs ago was ok. this is the uk and they do things different here.i know they have ruled out everything else and from the different sources i get care from my they dont think my future prognosis is good and i will continue to deteriorate. i dont know what it is like in usa, but here its like the secret police,they only tell you what they want to
 

mamaoftwo

Distinguished member
Joined
Aug 16, 2007
Messages
224
Reason
Other
Country
US
State
NY
City
larchmont
I'm originally from the UK and am well acquainted with the NHS. It is far from the "secret police" and frankly, IMO, one of the better healthcare systems in the world. Ok, you have waitlists to deal with but at least no-one is ever denied healthcare on the basis of money. Here in the US, if you do not have insurance, well life is very tough so thank your lucky stars that you at least have access to the specialists you need without being out of pocket.
As far as your patient rights go, you are absolutely entitled to read your own medical files. So I say go back to your GP and demand to know what tests have been done, what has been ruled out, what is still in question. Refer to the "what tests to have" section in the "Do I have ALS?"board (posted by MTPockets) and then armed with that information, request the tests you still need in order to get a diagnosis. Good luck.
 

Steve100

Distinguished member
Joined
Oct 5, 2007
Messages
164
Reason
CALS
Diagnosis
10/2007
Country
UK
State
Wales
City
Cardiff
I've found that we've had to ask for EVERYTHING on the NHS. I had to request tests for Lyme and MG, as they wouldn't run them otherwise. Last time we went the neuro more or less said, no more questions, its MND. I have no faith in him, but my Mother is too weak to want to trudge around looking for other Doctors.I don't know whether its the system at fault or whether I have a particularly lousy neuro.
 

mamaoftwo

Distinguished member
Joined
Aug 16, 2007
Messages
224
Reason
Other
Country
US
State
NY
City
larchmont
Hey Steve, I guess in that regard, it is different. Here, they're delighted to send you off for a bunch of tests - more docs, more tests = more money! I just got a bill in for $4,200 (yes you read it correctly! - for MRI's).
Anyway, all I was trying to say to Caroline is that she needs to be her own advocate and push to get an answer. There are people on here who waited a year or more for a diagnosis (some, like Pat, as long as 5yrs or more) but during that time, the docs were at least actively trying to figure out the problem. Reading Caroline's posts, it looks like she's just been left to hang out to dry and that is just not acceptable.
 

Steve100

Distinguished member
Joined
Oct 5, 2007
Messages
164
Reason
CALS
Diagnosis
10/2007
Country
UK
State
Wales
City
Cardiff
Hi Mamaoftwo, sorry to hear of your medical bill, I often think how lucky we are to have a free service without having to worry about insurance etc, myself, but the doctors do seem comparatively lax in comparison to what I read here. I didn't think about the 'more tests more money' angle. My Mother was diagnosed just a few months after being referred to the hospital, which does make me wonder whether they investigated properly. I have tried to encourage her to see another neuro, but she's too poorly and wants to be left alone, and I can't really blame her. I just wish I KNEW for certain, especially as she seems not to have much twitching, or spasticity, but weakness (she's lost any effective use of her legs, very weak in arms and hands) and swallowing/speech issues.

Take care

Steve
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
because of my slow progression i feel it is pls but i have some lmn signs like limb girdle muscle weakness and last year during neuro exam found i had hypotonicity(loss of muscle tone in some spastic areas,how is that so if it is not als? i asked my neuro about it and he just said he did not know! here in the uk they dont like to diagnosed till they are 100% sure. but all test s ok. my neuro is not a specialist in mnd ,so when i go back in april im going to ask to be refered to some one who is and a emg. some years ago i had nvc and was ok i asked him if it was neuropathy or myopathy he said no , so after everything excluded it only leaves als or pls
 

caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
very slow progression

Hello Oily,

Sorry to hear you are experiencing so many uncomfortable symptoms. It would not surprise me if this is not ALS, but another disease.

Husband was not diagnosed until after several symptoms of ALS appeared which is the norm, I am told. In husbands case it was 18 months after the initial slurred speech.

Take care of yourself and seek more information where ever you can. Hopefully more on this forum can contriubute more information to you, also.

You have come to the right place, many knowledgeable people here.

Regards,
Caroliney:-D
 
Status
Not open for further replies.
Top