Not looking good

[hopeagainsthope]

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Last summer I had what I thought was a knee problem, xray showed mild osteoarthritis, but kept getting worse.Was sent to physio, it was here that we discovered the whole left leg is weak. I had been having many falls. I am 54. My physio said knee reflexes were v brisk. Also babinski positive. Cramps in the bad leg over this whole period of time, and fasiculations more prevelant now than at the beginning.was referred to spinal team for mri spine and neck. No evidence of cord compression or MS. I should be seeing a neurologist in a couple of weeks time, I mentioned als and my spinal
chap said he could see why I might think that.all feeling still present in bad leg. Cramps starting in right leg slightly now and an awful sticky throat with cough. Cannot see if leg is atrophied, looks okish. So things dont seem great really.i may need to get some support here soon.
Will keep you posted

 

[Nikki J]

Hi sorry to hear what is going on. I hope they find another explanation for your symptoms but if they do not we will certainly be here for you. Let us know what the neurologist says. I know this is a very stressful time as you wait for your appointment. If you have not yet done so look at the sticky about getting a diagnosis at the top of this subforum. I think it will help you get the most out of your appointment

 

[hopeagainsthope]

Thank you Nikki, you are all brilliant on here.so appreciate you all.

 

[Green Queen]

All the best for your appointment. I hope that things turn out better than you expect.

 

[Nuts]

I'm sorry for what you are going through. Nikki is right, please read the sticky and be prepared for your appointment, and please keep us posted. You've been reading, so you know that if you get bad news, we'll be here for you.
Becky

 

[hopeagainsthope]

I have been prescribed Diazepam and Quinine for increasing cramps in both legs and feet. Arms and hands are cramping a bit as well, the cramping is nothing like the start of my leg weakness last summer, but seems to be sporadic and creeping over the past few days. Does anyone know if that kind of drug therapy works for these "spasms"?:???: Have been drinking tonic water (no gin though!!)Any thoughts?

 

[Nikki J]

Hi if they are muscle cramps then yes quinine should help. The reason tonic water is recommended is it contains quinine so I do not know you should do both quinine can have some nasty side effects that are irreversible. A relative of mine who took it for an extended period as prescribed had damage to his eighth cranial nerve that left him deaf and dizzy. Pickle juice or mustard is another remedy also magnesium. In the US a heart medication called mexilitine is being used by some neuros now ( they were studying it for slowing disease and found the participants reported improvement in cramping.

 

[hopeagainsthope]

Thank you Nikki, that is really helpful. I shall start with the Diazepam and then see from there. Helpful to know not to do the x2 Quinine. I don't know whether to call them cramps or spasms, but also it is a general uncomfortable muscle "feeling" a stiffness in now most of my limbs. I am now finding the kettle too heavy to lift! Roll on the Neuro appt, which at least should not be too far off? a few weeks time. I am trying not to get too scared, as it all seems a bit fast in the last couple of days to feel like this. Maybe I am just having a couple of "off days" but there seems to be a downward trajectory.I have a fantastic, loving husband who is being more than brilliant through all this. I think for him it must be awful to see me dragging this leg around, after being so active, he used to be the slow one!! Walking has always been our hobby.... Will keep updated once seen Neuro. X

 

[Nikki J]

Are you sure you are having cramps rather than spasticity? Cramps are like charlie horses and will affect a muscle of muscle group though of course you could have cramps in more than one area. Spasticity affects a larger area and is like stiffening or spasm. Treatments for cramps are different than for spasticity though you might try applying heat or soaking in a tub for either/ both

 

[hopeagainsthope]

Thanks Nikki,I think you are right, there is a bit of both going on. I have had in the past last year when this all kicked off major cramps esp at night. I have never previously been a crampy person. I remember a few last summer right down the whole leg, the sort that make you jump up when I was just lying still on sofa .
They went away thankfully. This feels like a "starter cramp" in various muscles that is just wanting to start in a small way, but is not going into a major cramp. Very strange. It is back of thighs, toes etc etc The stiffness is in the whole left leg. Then of course the added Facsiculations all over. So I think I have a mixture of bits going on. I suppose one could set off the other. Having a hot bath this morning did not help sadly, I thought it might, hence GP visit. I think the Diazepam is the next level. At least I have something now to fight it ..as and when as this last 24hrs has been pretty horrid. Work are being understanding at least and once I have some answers at the hospital I can plan how to cope with what is happening.

 

[hopeagainsthope]

Don't want to keep asking questions here soz, but just for info.... a penny for your thoughts would be helpful.Last Friday night at rest, bad leg went "dead" stiff could not move it. Nothing. Called paramedics, after 45 mins back to limp mode again, but at least back to walking. Had Diazepam and heat, all this helpful. Tachycardia during this episode. I have some coping mechanisms for if it happens again. Felt very "unwell" just before episode, so if this feeling returns, I will take Diazepam straight away. Another creeping problem is a bronchospasm, and coughing, this is intermittent, and trying Piriton as it feels wheezy and throaty, as when one feels allergic. My GP said it would be good to capture it during an episode, as chest clear when he checked; he has said to try a puff or two of Salbutamol to see if that helps, but only with caution. Capturing this breathing problem can be hard to achieve when leg is spastic and you are coughing to high heaven!! Can bronchospasm be an early symptom, or could it just be a coincidence? I also seem to be finding it hard to get my words straight, not slurred, but recall is a bit muddled saying things the wrong way round. I guess that could be because I have a lot going on atm. As you can see by this long post, I am quite able to natter on!! Finally; I see neuro this Monday yay, so am heading towards some help and answers soon. But if you have any immediate thoughts, I would love some info from you wonderful peeps.

 

[affected]

Hi hope. You sure have something going on, but it isn't ringing ALS bells with me, rather some other issue that is possible neurological.

You have to be careful applying medical terms to what is happening to you as you are not applying them correctly. That's OK here I guess, but you don't really describe spasticity for example, yet you use is a label for things that are happening to you.

Your doc sounds interested in solving whatever is going on, so put your energy into that rather than internet searching and self interpretations.

All the best.

 

[lgelb]

Hope,
Agree other ailments are more likely than ALS. I would bring a concise list of acute/ongoing problems with dates/ durations to the neuro. Let us know what s/he says and recommends next.

Best,
Laurie

 

[hopeagainsthope]

Hi again. I am back from the fabulous Neurologist. He was brilliant and I felt I had complete confidence in him. He was shocked I had left things so long before seeing him.Agreed leg was very weak and felt right leg was stiff as well.
Reflexes +4 and upward plantar reflexes. Could feel pin pricks fine everywhere. He said tongue was normal. He has confirmed that I have upper Neuron problems, at the time we could not see any fasciculations, but I did tell him I have seen them from time to time. Particularly when leg went into the spasticity episode as outlined earlier in my posts. He has confirmed that something is seriously wrong. Brain scan showed no MS/No tumours. All clear. So we now wait for EMG appt which should be in the next couple of weeks. It is a trying time, esp as every day something else strange keeps happening in my body. I am keeping busy as much as symptoms allow. He agreed to my keeping taking Diazepam as and when cramps and spasticity come on. That is the most painful part at the moment and the cramps have moved to right leg now. We discussed the wheezy chest and again keeping on with the GP's advice as it is only sporadic. I asked re keep exercising legs, he said not to worry for the time being. Let's see what the EMG throws up, I understand this is very definitive on the whole for diagnosis. God Bless.

 

[Nikki J]

Glad you have a good neuro sorry about the findings. Will hope for the best from the emg but we are here for you!