Now very severe HELP

[sb4]

There is a small chance his problems are coming from craniocervical instability; perhaps you could try elevating the feet of his bed such that pressure is taken off the neck/skull area. This of course could also make him worse but perhaps it's something to consider.

 

[Mary]

@MichaelK , @sb4 might be right - I'd thought of this myself the other day, and then unfortunately forgot about it before I could post it . Have you seen this thread about chiari malformation and cranio-cervical instability? @jeff_w was extremely ill, he reminded me a little of Martin at his worst, and it was found that he had cranio-cervical instability. He was initially put into a halo brace and then had neck surgery, and his symptoms have disappeared. See his post here. HIs brain stem was being compressed, causing all his symptoms.

Jeff_w has been very generous in answering questions about this problem and I'm sure would be glad to provide any information you might wish about this.

 

[MichaelK]

I have never heard anything about these things. After reading some minutes, I am not sure what to do without sending him to hospital that is still a thing he doesn't want to. If "elevating his feet" doesn't work we have the same situation which happened many times in the last weeks: Martin blocks the next ideas. So we are pretty careful not to overdo anything.
Have to gather some information and talk to his doc. @Mary : I can't open the hyperlink behind "this thread".

Thank you

 

[sb4]

@MichaelK It's not really about elevating the feet, more about de-elevating his head. Basically, in some people, there symptoms are caused by, or made worse by the area where the spine connects to the skull being too squashed, possibly damaging the autonomic nerves that come out of that area. If you tilt the entire bed up at the feet, then gravity will be pulling his head slightly away from his spine, relieving the pressure. I figure it should be relatively harmless and quickly reversed if not suitable. Of course I understand if you do not think it wise to do so.

 

[Mary]

I have never heard anything about these things. After reading some minutes, I am not sure what to do without sending him to hospital that is still a thing he doesn't want to. If "elevating his feet" doesn't work we have the same situation which happened many times in the last weeks: Martin blocks the next ideas. So we are pretty careful not to overdo anything.
Have to gather some information and talk to his doc. @Mary : I can't open the hyperlink behind "this thread".

Thank you

Hi - sorry, I fixed the hyperlink in my above post. And it's here as well. It's actually the same thread that Jeff_w's post that I linked above is in. I suggest you read jeff's posts, he has several of them in that thread, to get a better idea of what this is all about. Jeff recommends a special MRI to diagnose if there is a problem with the neck/spine. I know this is rather involved.

I suggest you read Jeff's posts, see what condition he was in, which was very severe, and then see what you think. Jeff ended up having neurosurgery which resolved all his problems. However, before the surgery, he used neck braces, which alleviated his symptoms to a great extent. I think initially he used a basic neck brace which helped some, and then eventually was fitted with a halo brace, a much more involved device, which alleviate all his symptoms. So I think it's possible to see if Martin has neck issues which may be a significant factor in his symptoms, without invasive treatment.

Again, I'd suggest tagging Jeff_w with any questions you may have after reading his posts.

I wish you both the best --

 

[MichaelK]

After reading through the whole thread, you are totally right. We should try the "soft" things like Trendelenburg position, Traction Test, Neck stretching device or a basic neck brace just to see how it works. An MRI ist no alternative at the moment. I summarized everything I found and forwarded these information to Martins parents that they can talk about these ideas with Martins doc.

Thank you all. I hope Martin wants to do that and I will report how things develope.

 

[Seadragon]

Have doctors considered referring Martin to a specialist who has experience with IVIG or Rituximab etc or is this not something he has access to?

After a one off trial dose of Prednisolone which worked a miracle for a few days in my case but which caused severe PEM afterwards, I am now being treated by a rheumatologist who has an interest in ME/post viral syndromes. He is considering treatments such as the above or perhaps experimenting with other DMARDS (cheaper and easier in the UK!) or/and low dose Prednisolone or Hydrocortisone.

Some people here have had some success based on this type of approach but they tend to be patients with an autoimmune aspect to their illness or/and autoimmune markers on blood testing.

 

[MichaelK]

I'm really sorry to answer so late. To many things to handle at the same time.

Currently we have no access to those specialists. We are focussing on LDN (which doesn't seem to work) and the Chiari/CCI-Problem. The specialist who should do the traction test checked Martin during the first visit and found out that the sympathetic is not very active. I hope he will do the traction next week but he is very careful.
The next steps will be as many metablic tests as possible before we have to go to a clinic. Finally there is no other chance to do further necessary tests.

 

[percyval577]

Worth a trial might also be to look at the following nutritions, which would be also "soft".
Fat, sugar, manganese. I myself improve very slowly by reducing them (to be short).
Sugar might be the first time difficult (at least that´s how I´ve experienced it, especially when ill with mecfs)
Fat I eat now only one time a day, with a "good" improvement - so far. Both are long term changes in lowering acetylcholine. So, there might be also the opposite possible/needed. (Here I remember the symp/paras. occur?)
Same with manganese, I reduce it to say the min RDA´s, lowering the activity of the iNOS in the brain, with a significant loss of pain over three years, and an immediate improvement of sleep. It´s no fun though.
I´ve made threads on the issues for the theoretical background, piercing some things together.

If it works, there is a good chance that it appears in autumn more clearly. But it would probably take years ... (that´s my experience so far.)

 

[jesse's mom]

Still have Martin gently in my mind. I hope something moves for him to get better...
I will keep checking this thread and keeping him in my thoughts and prayers.

 

[Seadragon]

I'm really sorry to answer so late. To many things to handle at the same time.

Currently we have no access to those specialists. We are focussing on LDN (which doesn't seem to work) and the Chiari/CCI-Problem. The specialist who should do the traction test checked Martin during the first visit and found out that the sympathetic is not very active. I hope he will do the traction next week but he is very careful.
The next steps will be as many metablic tests as possible before we have to go to a clinic. Finally there is no other chance to do further necessary tests.

I'm really sorry to answer so late. To many things to handle at the same time.

Currently we have no access to those specialists. We are focussing on LDN (which doesn't seem to work) and the Chiari/CCI-Problem. The specialist who should do the traction test checked Martin during the first visit and found out that the sympathetic is not very active. I hope he will do the traction next week but he is very careful.
The next steps will be as many metablic tests as possible before we have to go to a clinic. Finally there is no other chance to do further necessary tests.

@MichaelK I just need to say that I tried Prednisone again, this time with disastrous effects, so one needs to be very careful with this approach I feel now, especially if it is not clear whether the patient has a true autoimmune disease or if it is a chronic immune dysfunction instead (where the immune system is both over and under active maybe) in which case, steroids etc may make things worse.

It seems a subset of people here do very well on IVIG/Rituximab but that others gain no benefit or get worse.

Obviously each patient is different though so I hope Martin's doctors find something that helps him after more thorough testing has been done.