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[honeybun]

Anyone got any input on this.

My BIL is undergoing tests and he is a poor soul to be honest. He has terrible back pain, he struggles to walk, his balance is awful and he finds it difficult to stand unaided.

He has been for electric conductive tests and has an appointement tomorrow with a neuro surgeon.
I think his X Rays have shown a problem with his spinal cord. He has just turned 74 this week.
They have mentioned a genetic condition.

My sister is very down as he has deteriorated very quickly over the last two years. His brother was undergoing tests before he died....it was unrelated.

Any thoughts or insites anyone.


Honeybun
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[Limpy]

Phew - don't know what to say Honeyb.
Has your sister been able to get much information about the genetic condition?
There may well be support groups who can give sensible practical information and more to the point, know what help is available.

Hugs for your sister & BIL    

[Joyce]

Goodness HB, never heard of the condition. Just want to send your sister & BIL 

[honeybun]

We just need to wait and see what the tests show. It's so damned slow though....twelve week wait for most things. They are hoping that the next department won't mean another 12 weeks.

I think there is a faint option of spinal surgery....his spinal cord is being compressed I think....but that's a very big thing.

He does not cope well. He has had three breakdowns over the past twenty years....and they have been really bad. The one before last.....he was at my house almost everyday. He walked my Goldie...she helped more than me through tough times.


Honeybun
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[Limpy]

Sadly, don't think anything can be done quickly.
The cause of the peripheral neuropathy will need to be identified before anything at all could be done and that is unlikely to be quick. Spinal surgery is not to be undertaken lightly, that would be for anybody but especially so for a 74 year old.

[honeybun]

I know, his decline has been quick. Two years ago he was painting his house.

I really noticed  a huge different at my nieces wedding. He was awful walking down the isle. Then after the photos we had quite a walk back to the cars. I made the excuse that my feet were really hurting and got him to take my arm. It's very sad really.

He has been my BIL since I was 9. He drives me nuts but secretly im quite fond of him and I dont like to see him suffer like this.

It's a waiting game. 


Honeybun
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[Taz2]

My mum and my father in law both had this but it was related to their diabetes.

Hope you get some answers soon.

Taz x

[rosebud57]

Check it out on NHS choices.  It gives all the different types and causes, but as they are so varied you will probably just have to wait until the docs do their tests.

[CLKD]

From NHS:

It's thought diabetes leads to peripheral neuropathy because the high levels of glucose in your blood damage the blood vessels that supply your nerves.   If you have diabetes, your feet will usually be examined at least once a year to check for ulcers (open wounds or sores) as well as signs of possible nerve damage, such as reduced sensation.

Other causes

As well as diabetes, there are many other possible causes of peripheral neuropathy. If no cause is found, it is called an idiopathic neuropathy.

Health conditions   : Some of the health conditions that can cause peripheral neuropathy include:

excessive alcohol drinking for years
low levels of vitamin B12 or other vitamins
physical damage to the nerves, such as from an injury or during surgery

an underactive thyroid gland (hypothyroidism)
certain infections, such as shingles, Lyme disease, diphtheria, botulism and HIV
inflammation of the blood vessels (vasculitis)

chronic liver disease
chronic kidney disease
monoclonal gammopathy of undetermined significance (MGUS) – the presence of an abnormal protein in the blood
certain types of cancer, such as lymphoma (a cancer of the lymphatic system) and multiple myeloma (a type of bone marrow cancer)

Charcot-Marie-Tooth (CMT) disease and other types of hereditary motor sensory neuropathy – genetic conditions that cause nerve damage, particularly in the feet

having high levels of toxins in your body, such as arsenic, lead or mercury

Guillain-Barré syndrome – a rare condition that causes rapid onset of paralysis within days
amyloidosis – a group of rare but serious conditions caused by deposits of abnormal protein called amyloid in tissues and organs throughout the body

conditions caused by overactivity of the immune system, such as rheumatoid arthritis, lupus or Sjogren's syndrome

Medication

A few medications may sometimes cause peripheral neuropathy as a side effect in some people. These include:
some types of chemotherapy for cancer (especially for bowel cancer, lymphoma or myeloma)

some antibiotics, if taken for months (metronidazole, nitrofurantoin)

phenytoin (a medication used to treat epilepsy), if taken for years

amiodarone and thalidomide  … "

seems that this condition can have many causes so hopefully a full medical and working history will be taken so that any background information can be used to form causation and diagnosis.

A worrying time 

[thorntrees]

I have peripheral neuropathy in fingers and feet as a result of cancer and chemo(lymphoma). I find I need to keep my hands and feet warm or it is worse. Also not wear shoes that are too tight fitting as anything that constricts the peripheral nerves makes the pins and needles sensation worse. I also find pressing buttons and keyboards tricky as I don't always press hard enough due to lack of feeling in the finger ends. I really don't know what can be done to help as nerve damage seems very difficult to treat but maybe if the underlying cause can be found and resolved that will bring about improvement. In my case I know it's irreversible and just live with it as best I can, thankfully it doesn't seem to affect my balance at the moment though when I walk it feels like my feet are spongy on the bottom if that makes sense..Do hope the blood tests show something that can help your BIL Honeybun.

Thorntrees

[Kathleen]

Hello honeybun.

So sorry to hear about your BIL and I hope he gets the correct diagnosis and treatment.

Sending hugs and let us know how he gets on.

K.

P.S.My MIL has this due to diabetes and I always assumed it was confined to the hands and feet but maybe the problem can occur in the peripheral nerves in any part of the body?

[honeybun]

He has had a diagnosis today. It's genetic....his mother had it, his brother and now him. It has a name....can't remember what. It's irreversible. And will get worse. It's effecting his balance, walking,and lack of feeling in his arms and legs. They don't have a diagnosis for his back pain. He is to see a physio again and different pain killers.
He has hardly any feeling in his feet which makes walking difficult. The neurologist said that the back pain was not his area.

Not what he wanted to hear I don't think. He was hoping there would be some kind of operation.

I think his back pain is wear and tear...my hubby has the same. Men of a certain age who did apprenticeships, lifting and carrying over the years...

My hubby is diabetic and this can be a diabetic problem.....the only thing that he has in his favour is he has only been diabetic for about seven years. Although he suffers from very cold hands and feet if he controls his blood sugars well the chances of this are reduced.

I feel so sorry for my BIL, he does not cope well at the best of times with anxiety and depression.


Honeybun
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[Joyce]

Not the news any of you were wanting to hear HB. How's your sister taking it?

[Kathleen]

Hello honeybun.

So sorry to hear the news about your BIL.

The bad back issue is a common one unfortunately. My husband has problems from playing rugby and his brother is the same and he was a professional sportsman.

Sending hugs to you and your family.

K.

[rosebud57]

Hi honeybun,

So sorry for your families troubles.  Had another look on NHS choices and found this heredity form.  Don't no if it's the same one but you might be able to find some more info from this.

http://www.nhs.uk/Conditions/Charcot-Marie-Tooth-disease/Pages/Introduction.aspx