Neurologist what's your experience

Sorry you're feeling so down Tina, we've all been there in our own way so do know how you're feeling. I'm glad they haven't found anything else wrong with you too.

Although my legs have never given way they are often very weak and wobbly. Personally I have found physio helpful and have a good relationship with her, (tho I do go privately). I think a part of my difficulties is that of becoming deconditioned, my muscles easily tire and become weak and I have a constant struggle to get stronger again.

I wish you well

Jgw

Hi Tina,

sorry you are feeling so down, but not surprising after such an appointment. I hope you find some answers and start feeling better soon.

Yes, my legs feel like they are giving way when I am very tired. I don't actually fall over, but one knee decides to bend without me telling it to! So I quite often use a stick when I am out and about.

Is the swelling in your legs related to circulation? not sure where the neurologist comes in. My GP referred me to a neurologist two years ago, I think because she was a bit stumped about where to refer me, and she thought it might be myasthenia gravis. The neurologist did a lot of psychological tests, memory stuff, and then said there's a blood test for myasthenia gravis. (So why not just do that and I'd have been out of there in ten minutes.)

I don't know about physio, if it was gentle, maybe it would help. Physios are good at building up confidence and balance, I think, which would give you more courage to go out. Is there someone who could go out with you, until you build up a little strength? It's miserable not being to go out, and no wonder you feel isolated. But you're not, there's all the people on here with similar problems rooting for you and wishing you well.

 

Hi , my daughter has hydro physio ! This really helps as very gentle and the water takes the weight from your joints. She only has 20 minuets at a time as finds it very tiring but does seem to help . She also gets her legs giving way mainly as she is getting tired. Hope this helps and good luck .

Hi Tina,

?OOh sorry you feeling down, I must admit I've been feeling a bit that way myself the past 2 weeks.  I'm putting it down to the fading light as Autumn creeps in, at least that doesn't help much, until I remember, actually it's cosy with the fire on and the lights and a blanket round me.  I too visited a neurologist (I refuse to give him a capital letter at the front!) a couple of years ago, and had virtually the same treatment.  All still clothed like you, same minor tests...follow this with your eyes, etc.  And he said,

"Oh, I see you have Chronic Fatigue." .

My reply, "M.E. yes.".

?"Oh, we prefer it to be known as Chronic Fatigue, as we think there is no evidence to show brain inflamation.".

?"I notice you've put down, migraine.  Have you considered the fact that you take Codeine which is well known to cause dependency headaches?"

"Yes! I do not have dependency headaches."

?"Well I am going to write to your G.P. that you have migraine and suggest you start a course of Beta-blockers. Next patient nurse."

?I researched Beta-blockers and decided not to take add them.

?I think until they find a pointer in research that says this is a bone-fide illness, neurologists are a waste of time, or at least HE was as was the one you saw.  I also took note of the Action for M.E. people who don't recommend GET, although I do think of course that there is a definite out of condition element to most M.E. suffers, because of the inactivity of course.  Physio...umh I've only had unproductive treatment from the one I visited, however I have seen an Osteopath weekly for the past 17 years who treats M.E. with 'The Perrin Technique' which is basically a massage of some lymph nodes. I haven't been cured (of course!) however I do find it beneficial in keeping me going.  Osteopaths treat the whole body, so if you could afford to go to one who knows of that M.E. treatment it might just help you, and certainly they might be able to tell you what is happening with your legs giving way so suddenly.

?I do hope you have support, it makes a massive difference I find, especially when I'm feeling overwhelmed.  That's why I find just putting things 'out there' on this forum such a help when we're at a low ebb.

Big hugs to you,

Yvonne

 

Hi Tina, first of all well done for losing some weight (even if they don't appreciate it!). It's so difficult when you are not active so they should take that into account when telling you to lose more weight. I find having things like soup and more vegetables can fill you up without all the calories but you still need little treats too. You could try kids fun size chocolate bars. I was bedridden when first got M.E. and legs used to go all the time but very slowly built up my walking trying to go a tiny bit further at a time. But the thing that made the biggest difference to my leg strength was yoga. I joined a remedial yoga class which helped me strengthen different muscles and can now walk a bit further. Physio might be worth a try but if it makes you a lot worse just stop doing it. I had nerve tests done too (with no clothes on!) but nothing showed up. Good luck.

An "unsteady gait" can be a symptom of Vitamin B12 deficiency which is also associated with CFS/ME

Here was my experience with a neurologist. I have issues like a leaden sensation in my legs, and a feeling almost like paralysis when I walk. The neurologist did a nerve conduction test, which was normal. So he then tried to link my leg problems with lower back issues and sciatica. I tried to explain to him that I knew the difference between these back issues and the leg problems. He was kind, but remained perplexed and unconvinced. I can't blame him. He was just doing his job and was not familiar with ME/CFS. This is why I think it's so important to see a doctor familiar with our illness, so that when we get symptoms, the doctor can sort out ME/CFS symptoms from other problems. I have yet to find a GP who can do this, so I see a rheumatologist for GP-type stuff, like doing regular bloodwork to rule out other illnesses. And I see an ME/CFS specialist to deal directly with the illness.

Might well be some muscle wastage in the legs, which may be why they suggested weight loss. I'm still fairly skinny though and get the same wobbly knee giving way sometimes that's been mentioned elsewhere on here. Won't be B12 deficiency in my case as its been measured (and I've been taking a soluble supplement as well). But if you do have some muscle wastage, being overweight won't help, as you know.

I'm currently well enough at least to try walking around the block every day - the last 2 times I've done it without my stick. When I'm able to go out anywhere its usually with the stick, so I'm going to see if this will lead to an improvement.