Muscle weakness

[motherbear]

Hi everyone,

It has been a while since I last posted.

I was just wondering if anyone or maybe everyone out there suffers from severe

muscle weakness in their arms and legs as part of the disease? My son has had

spasmodic occurences of this from the getgo and is now having another.

It worries me to death as he just becomes completely disabled when this happens.

He is neg for Lyme . Also this has been investigated by neurologists who can't find a cause.

Is this just part of the disease process? He is diagnosed with Ankylosing Spondylitis and if anyone out there with AS can help I would be very grateful.

Many thanks.

Caroline

 

[Tonya]

I had severe muscle weakness in both my arms and legs but was diagnosed with Dermatomyositis.  I have been on AP therapy since April which is working wonders now just trying to rebuild all the muscle mass I lost.

 

Tonya

[motherbear]

Hi Tonya,

thanks for your reply. I will look up Dermatomysis and see if there is anything there. I was wondering if it could be caused to the fact that he is anaemic and has a very low vit D?

The muscle weakness gets him down more than anything as he can't even lift his arms very well.

Just had a look on the net and he hasalways had an elbow rash like the one shown. The attacks are very spasmodic in nature. His Creatine Kinase has always been raised. How have they treated your condition Tonya?
 

Caroline.

[Tonya]

I have been on AP therapy since April.  The pain/swelling is gone finally!  I went to my rheumatologist last week and said all my tests are within normal range.  I am still fatigued but says that is caused by the anemia.  It was definitely a long road to recovery.  There were many days/weeks that I felt I could not do anything due to the muscle weakness.  Now I just have to work on building the muscle mass that I lost.

I wish your son a quick recovery!

Tonya

[Seaside Shell]

Hi Caroline,

So sorry to hear that your son is dealing with this. 

I do experience muscle weakness at times.  It seems more extreme in my arms.  At times, I can barely raise my arms at all.

And vitamin d3 does help.  Have you had your son's level of vitamin d checked?

I wish you both all the best.

Shelley

[motherbear]

Hi Tonya,

sorry for the late reply, I have been so busy.

It has made me feel much better to know that other people have been suffering from this weakness . I always go into panic mode and jump to frightening conclusions.

Hope you continue to have wonderful healthy days ahead of you.

Thanks.

Caroline

[motherbear]

Hi Shelley,

thanks for your reply too.

Again I am sorry for the late reply myself as I am looking after the in laws and with my son feeling like he does I haven't had time to go online.

It is so strange that you mentioned vitamin testing. I recently asked my son's GP if he could test him for vitamin D levels. He did and they came back low.

 Anyhow he has decided to do a full vitamin test on him now which is wonderful but he won't give him any D supplements until he speaks to the endocrinologist.

I guess he is worried about over dosing and toxic effects?

Now I know it has helped you I will push for supplement and if he doesn't come on board I will have to supplement him myself.

The GP was talking about sunshine and foods rich in Vit D but we all know when you live in Scotland sunshine is a rare thing. Also sunshine gives you up to 95% of you Vit D requirements so it does look like supplements me.

Thanks again.

Caroline

[keith_nufc1]

Hi

I have AS (a moderate case). I am on doxy and doing well after 6 weeks(I think). Has your child tried the no starch diet. I combine abx with no starch/very little sugar/ no dairy.

Have you checked out kickAS.org?

Cheers

keith

[motherbear]

Hi Keith,

I am sorry not to have replied back earlier but I am not being told via e mail of posts.

thanks for your reply though and I am sorry to hear you have AS.
My son has been all but anorexic for the last three years to a point that I felt his general health disregarding the AS was becoming a serious issue.
I would love to try the low starch diet but at the moment he is being looked after by a dietician as his vits and mins are so low they are of concern. Part of the diet is high in diary as his Vit D is very low.

I actually joined kickAs.org a short while back thanks. In fact it’s time to have a look back again.
I always have the no starch diet in my plans for him but I have to choose the right time medically.

Hope to hear from you again and take great care of yourself. We will beat this!

Caroline.

[lynnie_sydney]

@motherbear wrote:

Hi Keith,

I am sorry not to have replied back earlier but I am not being told via e mail of posts.

Caroline.

Caroline – you need to subscribe to be notified. Here is a section from the FAQ’s. LynnieWhat is the difference between bookmarking and subscribing?
Bookmarking in phpBB3 is much like bookmarking in your web browser. You aren

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Parisa]

Caroline,

My husband had very poor appetite while he was sick so I know what a struggle it can be to try and feed someone who doesn’t want to eat. Your son’s appetite should start to rebound when you kill of the bugs.

[motherbear]

Hi Lynnie,

thanks for the advise and I have done just that so hopefully all will be well in the future.

I must admit without my glasses on I couldn’t see the subscribe forum bit, that will teach me, Ha! 🙂

[motherbear]

Hi Parisa,

thanks for the comforting thoughts. You are so right about the antibiotics giving him his appetite back! Since he started he has it back already and I am delighted.
Hope your husbands has picked up. I was giving my son a couple of Scandishakes a day. They are just calorific but taste just great, like a milkshake should. Then a good multivit on top.

Take care.
Caroline

[lynnie_sydney]

@motherbear wrote:

Hi Lynnie,

thanks for the advise and I have done just that so hopefully all will be well in the future.

I must admit without my glasses on I couldn’t see the subscribe forum bit, that will teach me, Ha! 🙂

Caroline – it seems at the moment that subscribing may not be working or notifications of PM’s. It is on a list of things that are to be ironed out over the next little while. And by the way it’s taking all of us time to work our way through the new stuff here! Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Author]

Posts