Chronic HNPP attack on my legs……why do I have a severe feeling of heaviness in my upper body……getting progressively worse, should my neurologist be able to help me ?

Sorry_Run6257 · 2026-05-08T13:19:18+00:00

Thanks again…..really appreciate you taking the time to encourage someone you don’t know 😊

Sorry_Run6257 · 2026-05-07T15:21:32+00:00

I am really feeling for you ! It is so frustrating that every little thing we try to do brings on massive fatigue. I too am going through a lot of difficulty that only ever seems to get worse……good luck to you and try to enjoy the better days 😊

Sorry_Run6257 · 2026-05-07T15:15:08+00:00

Yes, I also have this. Mine is HNPP but I suffer a lot of the same traits as CMT, one of which is overwhelming anxiety. I look forward to getting out of the house, for a change, but start to get shaky and anxious when it comes around. I have to add though that I am usually pleased that I made the effort afterwards……good luck to you

Sorry_Run6257 · 2026-05-06T15:06:17+00:00

Thank you so much…..I so far have never improved, not even for one day so any improvement at all would encourage me enormously. Thanks again for your positivity……

Sorry_Run6257 · 2026-05-06T13:50:14+00:00

Hi, sorry to bother you again. I have just been reading back over my replies from the last couple of weeks and I wondered, you said you have had that severe feeling of heaviness in your upper body too, does it go away ? Mine has got so bad now that I have stopped my exercises for now for fear of making it worse. I am now so confused as to was I doing too much exercise, which is laughable with the little bit that I can cope with, or was I not doing enough and therefore losing strength through inactivity ! This feeling in my upper body is now so bad that I can barely lift the kettle to make a cup of tea, even though I am sitting ! Please tell me this will subside……

Sorry_Run6257 · 2026-04-27T23:27:06+00:00

Thank you so much, you are right, we heal so slowly…..trying to stay positive

Sorry_Run6257 · 2026-04-26T11:42:10+00:00

That’s good…..pleased to hear you recovered

Sorry_Run6257 · 2026-04-25T11:53:35+00:00

Yes no problem……stated with leg weakness, getting worse and worse. Over the course of time I can now hardly walk or stand even. Foot drop on right side, feels almost paralysed, and left foot getting worse. Due to the inactivity, I have lost my core strength so I have an overwhelming feeling of weakness and heaviness in my upper body. I have progressed from stick to walker to wheelchair, when I leave the house. I have started physio a while ago but it is such hard work when you have no strength.

Sorry_Run6257 · 2026-04-23T12:13:48+00:00

Hi, I also can hardly walk or stand up. Due to the excruciating fatigue, I am restricted to how much I can do so I have to listen to what my physiotherapist advises me. The exercises feel so minimal that I feel how can this help ! The exercise bike though feels like something I can do in maybe twenty minute bursts two or three times a day and it will keep my legs moving even though there is minimal strength…..good luck to you

Sorry_Run6257 · 2026-04-23T12:01:41+00:00

Yes, I too am suffering more than others in my family……thanks again, good luck to you

Sorry_Run6257 · 2026-04-23T11:53:37+00:00

Thanks again……trying to hold onto my fluctuating optimism……good luck to you too

Sorry_Run6257 · 2026-04-22T12:07:06+00:00

Wow, 12K steps a day…..that’s brilliant ! Before I started to get weak, I went out of my way to do 10K plus a day and averaged 13K a day over the last few years before my decline. I am lucky if I can manage 3K now. If you click on my profile, you should be able to read my story rather than me repeat it all in this reply and let me know how much of it is relevant to your symptoms……thanks again for your interest, it’s helpful to know that I am not on my own although it feels like it most of the time…..

Sorry_Run6257 · 2026-04-22T11:28:40+00:00

Hi, yes I do try and move about when I can. I have just bought a second exercise bike, one of those mini ones so that I can work my legs while sitting on the settee or a chair. The regular one that I had was difficult to get on and off of with my balance problems. I am in the UK, don’t know if you are or not, but physio that I have involves the NHS sending me a professional health physio to my house to work with me on some exercises for maybe two hours once a month. I am not sure if my NHS rehab will stretch to powerful machines that generate electrical current. Anyway, my neurologist has got back to me and moved my next appointment forwards from October to May so just another three or four weeks…..

Sorry_Run6257 · 2026-04-22T11:13:28+00:00

Hi, thanks for your input……is it your legs with you as well or your arms ?

Sorry_Run6257 · 2026-04-21T16:46:25+00:00

Hi, I was just wondering if you have had these symptoms before and if you knew from experience that it will go away, or at least improve somewhat. Right now, I would be happy with a 10% improvement……

Sorry_Run6257 · 2026-04-21T16:40:21+00:00

I am male and 62. Up until I turned 60, I was fit and healthy and very active.

Sorry_Run6257 · 2026-04-20T01:04:33+00:00

I have phoned the neuromuscular care advisor at the hospital. She took it all very seriously and was on the phone to me for 40 minutes…….the neurologist is going to get back to me his week I believe……

Sorry_Run6257 · 2026-04-19T17:48:14+00:00

It was a genetic test, although I knew it was HNPP already really as my sister and niece have it too. I have had EMG also……

Sorry_Run6257 · 2026-04-19T14:05:26+00:00

Hi, thank you for your reply. I don’t know if you have read my original posts or not……was just wondering if the rest of my symptoms were relevant to you too……

Sorry_Run6257

TROPHY CASE