Update

[simplysal]

Hi all,

It's been a while since I've posted anything.

It all started back around July of last year when I noticed things were amiss but at the time, things were literally just that. I had the sensation of someone pouring warm oil right on the inside of my thigh that came and went. At the time, I also felt as though I'd had the chills and my appetite just disappeared. Then came the twitches.

I went along to my general practitioner in September of last year who ran a series of blood tests and said that if the blood tests came back normal then a referral to a neurologist would be indicated. When I went back to my general practitioners surgery for my blood results, yes they were all normal however, that doctor felt that his colleague was ahead of themselves and that it was too soon to be concerned enough to warrant a referral to a neurologist and it was left at that.

I decided that should I have anything wrong, it would become apparent over time. I'd managed to take my mind off it for most of the time. On a few occasions my worries would spring back. I also thought well if it is MND no-one can cure it anyway and there was an element of me that would somehow rather not know and just hope and pray that these symptoms would simply disappear of their own accord.

Unfortunately symptoms have not disappeared. I twitch. In my right thigh often, my right arm, my cheeks on my face. My toes just jerk on their own. I have between my thumb and index finger this pulse like movement but it's going almost twice as fast as the pulse in my neck. My arms are heavy. My legs are heavy also. I cannot even comb my daughter's hair without having to drop my arms to my side for a rest. I sleep well but wake around 4am most mornings. I have this thick sticky saliva that gets lodged in my throat. My appetite has gone. I've lost just over a stone in weight in a month.

So whilst I'm on here updating you, I know now that there is no point in 'panicking'. Been there done that when I first made the biggest mistake of consulting Dr. Google! I'm over that now........it feeds nothing but fear and isn't at all productive. The only way I'll find out what is going on with me is by going down correct channels so I went back to my general practitioner. They ran another series of blood tests last week and has made a referral to a neurologist.

My first set of bloods all came back as normal except for a low white blood cell count as 3.2. He sent me back to have my FBC repeated. The White Cell Count is now within normal range at 4.2 or something I think they said but another part of it is wrong........I think it was Mean Cell HP or HB or something which was 32.

Anyhow, I don't post often. I have to be honest and say that I have read often on this forum. I would like to know if there is anything going on with me and hope that an appointment with the neurologist will come sooner rather than later but here in UK, within the NHS waiting times for a neurologist are huge.

Ah well, nevermind.......I can't do anything to push it forward so I'm not going to worry about it.

Many thanks for reading. I of course will post again once the neurologist has done whatever they feel needs doing if anything of course. Not very much looking forward to an EMG though if I have to have one - it sounds like a painful/uncomfortable test to have done arrgghhh! I'm afraid to say I'm a little wuss bag and am not at all brave.

Thanks again, Sal xx

 

[simplysal]

Sorry I forgot to say that I cramp often in thighs mainly and my walking is very stiff, my thighs just feel so weak. Anyhow, that's enough for now. Thanks again, Sal x

 

[HelenL]

Hi simplysal, the EMGs aren't that bad... if you've had children, you can definitely handle it.

Try upping your vit D intake and see if that helps the twitches at all... I currently take 2,000mg a day, down from 5,000 when I was twitching a lot more... there's evidence that it helps the twitches in MS patients, which is why I started taking it.

Do you have muscle atrophy, clinical weakness, quick reflexes or a positive Babinsky? Your GP would have done all this as a first rule-out of diseases.

Hope you don't end up belonging here, but keep us posted. Sounds like you have anxieties under control, good for you for keeping a positive attitude!

Helen

 

[simplysal]

Hi Helen, thanks for taking time to respond. The GP I saw for the first time last September asked me to push against his hands and pull my own back. He may have tried that with my legs too but I cannot remember. At that time though, symptoms had only been going on since the July. I think he did do that knee reflex thing by tapping his stick just under my kneecap but that was it. When I went back for the results a week later again in September of last year he thought that what the GP had already done and suggested was a little premature. I explained how I was doing to a locus GP at the surgery last week, she looked at the computer system from my last visit, said she'd do another series of bloods but would send me to see a neurologist. That referral was sent on 24/5 do we'll see what happens when I go. Re. muscle atrophy clinical weakness quick reflexes or positive babinsky I can't really comment about yet as this hasn't been formally tested by anyone but as soon as I know anymore I'll of course let you know. I'll Definately buy some Vit D tho, it can't help! Thanks Helen x

 

[simplysal]

Excuse typos OMG I meant Vit D can't hurt, sorry x

 

[notme]

Ok, you were here first months and months ago--I know things are slow in the UK--but I think you were here last October and supposedly going to a neuro.

Just this last month, this forum has lost multiple members -- some that posted in your last thread have passed away this week.

Why am I telling you this? Hopefully, to point out to you that with months of symptoms--and NO loss at all--ALS is very, very unlikely.

If you're losing weight--that is something your doctor needs to address. There could be hundreds of things going on. Please don't mistake muscle fatigue with muscle loss.

Muscle fatigue causes muscles to become tired with use--then the symptoms get better when you rest the muscles. With ALS--when the muscle gets weak--very quickly it gets atrophy. WHY? Because the nerves are no longer feeding it. The body reabsorbs the muscle for energy. Atrophy is not something that would be missed by a doctor.

I don't know what I have--but I know what weakness for me is. For me, it's not difficult to push a button--it's impossible. It's not difficult to hold clippers in my hand, it's impossible. It's not difficult to hold my arm up and brush my hair--it's impossible. WHY? because after several months of inability to USE the muscle--it simply died. The neuro noticed the twitches in the dying muscle before I did. It's still there, by the way. The twitching didn't start until the atrophy did in my case. My dominant hand and arm look like they belong to a child. That process took less than a year in my case. You've had symptoms now for a year--you apparently have no 'loss of function' which is a good indicator that it's not ALS>

As for my legs--they look absolutely great. WHY? Because they have spasms and cramps and the muscles are as hard as rocks. Now, with my exam by the doctor--my hyper reflexes and posisitive babinski sign and loss of strength were easy for her to spot. As was the 'spastic gait" I apparently have. I worked in the medical field 30 years and didn't know I had a spastic gait--I just know my legs don't work and I fall a lot.

What I don't have is a diagnosis of ALS. There can be a LOT of things that cause weakness--and even atrophy. Weight loss isn't a sign of early ALS--but it can be a sign of numerous very bad things.

GET SOME ANSWERS. Insist on them. I remember you have two young children. You owe it to them to find out what, if anything, is wrong with you.

I wish you luck--but I find it hard to believe that after a year of symptoms, you haven't done more than see a GP if you were seriously concerned.

 

[simplysal]

Thanks for your comment. To be honest with you you can believe whatever you like. I'm not a liar thanks very much. When I saw my GP for the first time, they said they were going to send me to a neurologist if the bloods were fine. When I went back for the results, that doctor confirmed the results as normal but disagreed with his colleague and felt it was way ahead of themselves to send me to a neurologist. I was therefore not sent. I hadnt been back until last week. A referral to a neurologist has now been sent. I can't say anymore than that until I'm seen and tests completed. You don't know anymore than I do whats going on. Of course I'm taking proactive steps to find out. With respect you don't know me and I'm offended at your tone. Using the words 'supposedly' and 'I find it hard to believe' are utter rubbish. I hope more than anything that an answer to what's going on can be found for mine and children's sake and naturally hope that what's found is treatable. I'm more than happy to keep updated and hope to provide good news. Again appreciate that you've taken the time to respond but don't ever imply I've lied - have never lied in my life. I hope you find answers to, the not knowing is definately the worst so good luck to you. That's all I have to say.

 

[simplysal]

Notme, ive already responded to your comments which isn't showing yet, awaiting approval. Just wanted to add to that though I didn't understand when i read your response to my thread the appropriateness of mentioning those that have passed this week to my post as the only one I knew had passed this week hadn't responded to my original post (Grampa Al). I've only just now this minute read that Allen passed also. I'm sorry to you all for having to lose such amazing people. They definately gave themselves to help, support and empower all who visited this site. Believe it or not, even though I've posted minimally, I read quite a bit and am very much saddened too at hearing of their passing. I'm sorry, my timing is pa nts to say the least. I just wasn't aware.

 

[simplysal]

Just in case it doesn't show I just wanted to say how grateful I am for you to take the time to respond to my thread. I take great liberty though in fairness at anyone using terms like supposedly and hard to believe. I wanted you to know that you don't know me personally but if you did, you'll know you'd never find someone anymore honest than me and implying I'm being dishonest has offended me. I'm on the w/list now to see a neurologist and I'll keep everything crossed that any worries that I have are alleviated. I do appreciate you taking the time to respond though. Again very sorry for lousy timing, Sal.

 

[HelenL]

Good luck and keep us posted...

 

[simplysal]

Thanks Helen, I will do x

 

[Toto's Dorothy]

Sal,

Did the doc tor ever give you a reason for the extremely high Mean Cell HB? You mentioned feeling under the weather when all of this began. Is it possible, that you have contracted a virus? What were the reasoning behind doc tor 1 to give a referral in haste? Now is the time you must take control of your healthcare. You have already fallen through the cracks. Get copies of all tests and doc tors notes and start a notebook. Take it to every appoint ment and before leaving whatever doc tor ask for lab results and doc tors notes to be mailed to you.

Now I'm not saying this because I think you have ALS, far from it. Like notme said, you would have progressed this past year. You haven't so that's a good sign. Helen mentioned taking vitamin D. Yes it doesn't hurt. Also, check your B-12 results. Often times, these can be extremely low in women. And by reading. You know that twi tch ing is the body's way of telling you the muscle is dying. So its an end stage symp tom, not in the forefront. So a symp tom that puts you in the NO category. Couple that with no progression of weakness, moves you again on the NO side. I know this has probably been mentioned before, but have you visited the B F S web site? It wouldn't hurt. And I have read where they have c h a t sec tion where someone can answer you right away.

Good luck to you,

 

[simplysal]

Thanks toto,

Yes BFS website was mentioned on my previous thread and although I haven't registered as a member have read through posts (putting eggs initially into one basket and a fault on my part registering here but not there). Of course it hopefully is the case that what I have is benign. All I can do for now is to keep an open mind, enjoy life in the here and now which is what everyone in the world should be doing anyway. Appreciate what I have, not what I don't. Realise that I just need to wait to be seen, have the tests done and go from there. I'll provide more specific info once its to hand. Again referral to neurologist was sent off by my GP on the 24/05/12 and have no idea yet when an appt will be sent. Ill just wait and see and hope for the best. Thanks again, Sal.

 

[Robynnblue]

Yep I run the B.F.S chat..and you are welcome to join us there..we have several members from the UK as well...You sound like an absolute case of B.F.S to me and I would be shocked if you find out anything different...Your symptoms presentation is classic including the weight loss...Its very common for many of us BFSers to experience significant weight loss...If you would like the link to my chat site...feel free to contact me on my page here or leave me a PM whichever..


Take care and hope to see you there at some point..I think you would be amazed at how your story matches up way better over there.

Robynn LeAnne

 

[notme]

Sorry---but after a year, I'd have thought you'd have done more than see a GP twice by this time. I hit up my doctor, then a neurosurgeon and then two neurologists when I lost the use of my hand. The GP that ignored me--well, quite simply--I ignored her and found a new GP.

Shrug. I wasn't calling you a liar at all--I was questioning your lack of seeing someone during the months that have passed since you were last here.

So--yes, I find it hard to believe someone would not see someone with drastic concerns. Hard to believe as in amazed--not as in 'lying'.