Frustration at no diagnosis

[Shanni]

Hi Everyone. I was hoping that someone may have been in my position and maybe able to help me. For the past 6 months I have been unable to work fit to numbness and pain in my arms and legs. My arms and legs are now weak and I cannot walk large distances. Neurologist today said that everything neurologicaly is fine and now wants to refer me to a rheumatologist. I’m feeling as though everyone is passing the buck. I also have chronic fatigue. Sleeping 10- 12 hours overnight then maybe sleep up to 4hrs throughout the day. Someone please give me some suggestions as what to do. My bloods were all fine but I have a critically high B6 level

[geoff]

Hello Shanni, I'm really sorry you are struggling with this and I'm not a doctor to even suggest this, but know that lack of Potassium or other vitamins may need to be considered.

I do know someone who did have very low Potassium levels and affected her in many ways.

Geoff.

[Shanni]

Hi Geoff

i have had all bloods done. All are fine but b6 levels. I get so frustrated and am told I have depression. That’s fine but the current situation is what is making me depressed and so sad 😞 Thanks Geoff

[geoff]

Hello Shanni, I know of your frustration and that's what really confuses us, no one being able to diagnose us when we suddenly become ill and once again I'm not a doctor, however, when our immune system is not capable of fighting off what it is expected to do, then follow on effect creates other problems and sleeping 16 hours a day wouldn't give our muscles the exercise and strength.

I sleep about half the day because of the mixture of medication I need to take every day, I've lost count of how many pills I take but need 2 Webster packs per week.

Both my sons have bought different exercise machines so I can stretch my arm and leg muscles, which I use every second day which has certainly helped me.

Take care.

Geoff.

[Raava]

Hi Shanni

Have you tried going to a physio trained in spinal alignments or going to a good chiropractor. Even though you may not feel it, it may be your neck or back. Especially the C vertebrae in your neck (or even tight upper trap muscles). There are a lot of nerves that run though that area and from personal experience (I have joint hypermobility so my neck & spine go out of alignment regularly) it can really mess with your energy levels and sleep. It can also cause brain fog. I have had short numbness when I pinch a nerve but not long term, however it could still be a possibility or maybe linked to it. I will always recommend a well trained physio over a chiropractor as from what I have experienced/heard they just tend to be better, but that may be different for your area.

(Additionally maybe try neural glides and/or wall angels and see if that makes a difference. A set of 10 or so once or twice a day for 5 days would be a good way to see if they improve things or not. You can do neural glides for arms & legs whereas wall angels really only effect the upper body. If the wall angels pull or hurt a little then they're likely doing good things (but don't over do it), if you feel nothing then they probably aren't doing anything. It's important to keep your shoulderblades back when you try them though otherwise they feel like they're doing nothing.)

I hope things get better and you find the cause of your symptoms.

Best of luck,

Raava