I'm new and frightened

[Plum]

I've been reading this board for quite a while and finally made the decision to join. I'm a 64 year old woman. Two and a half years ago my knees were really painful so I went to see a physio for advice. She said I had lost the muscle on the inside of my knee and gave me some strengthening exercises which I did, to no avail. The knees settled but a couple of months later (Dec. 2008) my calf on the same leg started twitching. My leg "didn't feel right" - hard to explain. I waited a while then saw my GP who was worried and referred me urgently to a NHS Consultant Neurologist. He told me I was imagining the twitching, the muscle loss was probably due to a bad knee and dismissed me. HIs words in the letter were "well she does weigh 90kg and wears tight underwear". I am 5'10" and yes, overweight, but he was really insulting and my GP was quite angry on my behalf. He did, however, arrange an EMG and it was normal. I did lots of walking that year. The leg continued to twitch - along with the arms and buttock. Last year I was told I had fibromyalgia but the Rheumatologist was quite alarmed when he examined me because my buttock had wasted, and the back of my leg as well. I didn't know about this because I don't look at the back of my leg or my bottom if I can help it. He measured it and there was a 2" difference above the knee and all the way up. He made another neuro appointment which I went to last November. Doctor just looked, said I had brisk reflexes, a bit of muscle loss but nothing else and saw no reason to repeat EMG.

Fast forward to last week. After major twitching down one side and developing a numb foot (left leg as usual) I went to GP who was alarmed when he saw my leg. Referred me back to neurologist. I said "is it possible that I have got ALS or another form of MND". He said "wouldn't have thought so because of timescale". When I pointed out that some people took two or three years to diagnose he agreed it was possible and said "but I have to say that it does seem to be progressive". I have told him that my walking is affected and he was not suprised "given the degree of muscle loss on the leg
I would expect that". 26 August is neurology appointment and I don't know if it is the one who dismissed me so curtly but I am very worried now.

Having said all this I still can walk three miles but my thin left leg feels stiff, particulary when I start off. In fact, if my right leg felt like my left I would have trouble walking. Sorry this is so long but I've got no one to discuss this with - my friends just tell me to stay off the internet and there's nothing wrong with me, but you know your own body don't you?. I am just dreading the appointment yet can't wait because I need to know yet I'm scared.

 

[Ms. Pie]

Your friends are very wise. Wait for your diagnosis. Stop reading posts here. Good luck Plum!

 

[Alyoop]

I think there is clearly something going on, but friends always like to say " you are fine". Not sure where they all get their medical degrees from. It could be caused by many different neurological conditions, so just wait for your appt and try not to self diagnose. It's always pschycologically disastrous.

If you get the same doctor, tell him you were upset by his rudeness. Easily said I know.
I cannot see that 90 kg for your height is a huge weight issue and would have no bearing what soever in the atrophy. What tight underwear has to do with anything I have no idea? I think his are obviously much too tight!

Good luck Aly

 

[kmendsley]

I know it is hard but wait for the appt. Most likely you were given a different neuro would be my guess as well. And if not, take the opportunutiy to 'throw it back' in their face and say look it didn't get better! Whatever it is, it has got progressively worse. Doctors cannot ignore what is right in front of them. Best of luck.. sounds like you have a good gp. Stick with them till they figure out whats wrong with ya! Until then, enjoy your 4th of July.

 

[notme]

Hon, my best advice to you is to see a different neurologist. Tight underwear. Please. I would have told him where to go and given him directions.

 

[olly]

hi plum,welcome to the forum.
there is definatley something going on but at this stage it could be many things other than als.
i have had doctors like you had,you have to remember that despite there godly ego they are no better than the rest of us.........you have to be firm and stand upto them........believe you me,i have.
take care,caroline

 

[Plum]

Thanks for all your support. I'm really worried at the moment because since I did a 3 miles up and down cliff walk the other day things seem to speeding up. My leg feels really "odd" = stiff down the back, buzzy on the calf and thinner than ever. I had put it to the back of my mind for the last year or so because things seemed to stay about the same. I knew there was something wrong but "didn't want to go there". Now I have to. If I just had the twitches I wouldn't worry too much. if I had atrophy but no weakness I wouldn't be SO concerned and if I had the weakness with no atrophy or twitches I'd probably have put it down to old age (at 64 yesterday). It's the combination of all three. I've found a MND specialist about 80 miles away and I hope he will see me as a private patient. I need to know. I'll have to use my 'rainy day' money but it's raining! I've spent too much time on the internet lately - I left ALS alone for ages and my favourite sites were Amazon and QVC, now in three weeks it's really hit me and everyday is worse. My best friend now agrees there is something wrong but is praying that it is not a bad as I fear. But I would never say "Why me?" more like "Why not me?". I'm going to bed now Bless you all and Goodnight.

PS. Should I stop walking so far ? that will break my heart because I enjoy it so much.
I thought it would help keep my muscles but it seems to have the opposite effect.

 

[Ms. Pie]

If it's okay with you I'll keep you in my thoughts and prayers.

Yes, don't do any major exercise until you know exactly what you're dealing with. I asked about that very thing when I was diagnosed and she said that strenuous exercise can speed up the deterioration of muscles. My husband and I are avid skiiers and hikers. No more for me. I'll do anything to keep what I have including stopping doing some of the things I love.

I'm so sorry you are here Sweets. Keep us posted. May God bless you and keep you.

 

[Plum]

Well trawling the internet may have paid off! I have discovered a consultant neurologist who specialises in MND and related conditions. He is about 80 miles away. I phoned expecting to get his secretary and he actually answered his own phone, so I had a chat with him. He is willing to see me and he would do the EMG tests himself and I would get answers the same day! Told me to ring his secretary to arrange appointment and it could be within the next two to three weeks. Must take copies of all correspondence and I will ask my supportive GP for a letter as well. Unfortuntely I won't be able to go next week because I'm having a small operration on my "trigger finger" (tendonitis). Before this leg business blew up again the trigger finger would have been a big deal, now it's just a nuisance, albeit a painful one.

I have to say this doctor seemed very helpful and approachable, I know this won't change the outsome but at least I feel as if I am getting somewhere.

 

[olly]

wow plum,i take it its a private consultation?
if you pay out of pocket you get seen asap and of course there very nice................totally the opposite to nhs,wait months and then get a grumpy egotistical moron...............you get what you pay for.

 

[Plum]

Hi Olly, yes it is private. This thing has been going on three years with the initial diagnosis of neuropathy caused by overweight and tight underwear. As I remarked to my GP, I sound like "Godzilla meets Ann Summers". I still get angry and upset when I think of that man so I really did not want to see him but in this part of the world options are limited. I always go by my GP - if he is worried then so am I. He tried to bypass neurologist and just have emg's first but NHS says no. So - a two month wait for consultatation followed by a two month wait (at least) for emg, then goodness how long before the results. Actually the price is really reasonable - under £400. If I haven't got too much to worry about then it's money well spent and if I have, well - I may as well spend the my savings and live my life while I'm still able. I worked hard from 16 years to 59 years and went without things ' now I'm glad I am able to afford this consultation, and if any of my friends were in the same boat I would pay for them as well. It makes some people think "It's alright for her" but at least I'm freeing up an NHS appointment for someone else.

 

[Plum]

I'm in a lonely place today - I've been twitching and trembling down one side all night - it's not so bad if I don't lie on the left side. I've got great friends but I live alone. I spoke to my GP yesterday and he advised to cut walking down to just strolling about. My left leg and buttock seem to be vanishing before my eyes and it is very obvious through clothes even.. Sometimes the twitches are not so much twitches as tremors and vibrations and the top of my left arm feels like I've got butterflies in it. The leg really doesn't stop and when I'm alone of course I can't help focusing on it. The one thing that did distrat me, cliff walking, I don't think I should do at the moment.

I wonder if being diagnosed actually comes as a relief because you know what you are up against - or is it more terrifying still. I could not presume to know how it feels. When my sister was diagnosed with ovarian cancer (in complete remission for 11 years now) she felt some relief because her GP had been dismissing her for months and she knew she had something seriously wrong. I have spent hours reading some posts and have so much admiration for the courage and patience the members have. Also, it's the people living with the diagnosis that are trying to prop up the ones like me in limbo land. I told my GP that I felt it was bad and he didn't disagree. The other thing that worries me is that no matter what I eat - chocolate, chips, cake, etc. for the first time in my life I am not putting on weight but I realised I am actually putting on fat around the middle and losing my bottom completely. Today I will go shopping for really healthy food but when I'm frightened I think "oh what the hell". I have always been a comfort eater so I will continue to eat for comfort but concentrate on protein, fruit and veg. Sorry to bother you with all my fears and ramblings but I'm scared and lonely...

I'm so grateful that I belong to our "church family" because I couldn't wish for more support and love from them, but, in the end, I'm alone.

 

[olly]

so sorry your having a down day plum,we all get them.
yes,when something has been going on for a while it can get frustrating with doctors,waiting for results,told results are ok ect ect.
finally getting a diagnosis can be a relief..............at least then you have a name to it and know what your fighting against.........but ,ofton after diagnosis you go through a wave of different emotions..........anger,more frustration,feelings of giving up but then the feelings get more positive you start to except,plan and vow to fight to the end.
pretty exhausting on the emotional front really lol.

go shopping and treat yourself,take good care.
caroline.

 

[Ms. Pie]

Olly, you have put it in to words exactly. Personally, I get frustrated from time to time. It's like a little roller coaster. Up, down, Up, down, UP...I like to stay up.

As for keeping the weight on, I'm quite small and eat high calorie foods constantly. I've managed to keep my weight steady but I have to stay on it. Heavier people do better with MND. Us puney ones have a rough time.

Be careful with yourself Dear. I'm glad you found us.

Hugs,

Marta

 

[notme]

Thanks for all your support. I'm really worried at the moment because since I did a 3 miles up and down cliff walk the other day things seem to speeding up. My leg feels really "odd" = stiff down the back, buzzy on the calf and thinner than ever. I had put it to the back of my mind for the last year or so because things seemed to stay about the same. I knew there was something wrong but "didn't want to go there". Now I have to. If I just had the twitches I wouldn't worry too much. if I had atrophy but no weakness I wouldn't be SO concerned and if I had the weakness with no atrophy or twitches I'd probably have put it down to old age (at 64 yesterday). It's the combination of all three. I've found a MND specialist about 80 miles away and I hope he will see me as a private patient. I need to know. I'll have to use my 'rainy day' money but it's raining! I've spent too much time on the internet lately - I left ALS alone for ages and my favourite sites were Amazon and QVC, now in three weeks it's really hit me and everyday is worse. My best friend now agrees there is something wrong but is praying that it is not a bad as I fear. But I would never say "Why me?" more like "Why not me?". I'm going to bed now Bless you all and Goodnight.

PS. Should I stop walking so far ? that will break my heart because I enjoy it so much.
I thought it would help keep my muscles but it seems to have the opposite effect.

The thing with MND and exercise is trying to maintain what has not been lost--without overdoing it.

If falling is a potentiality, I'd suggest perhaps using support. If you enjoy walking and it doesn't worsen any of your symptoms--then enjoy them unless or until a doctor says otherwise.

Glad you found a neuro that can give you some concrete answers. I think sometimes limbo land is worse than an answer--we tend to imagine the worst case scenario so often. Try to keep in mind, if you can, it's can only be ALS when it can't be anything else. There are a lot of other possibilities out there--I hope they find one of them that is fixable.

Good luck with the trigger finger surgery.

Hugs
Hope