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Endless infections with fluctuations in neuropathic pain

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Old 05-09-2015, 11:38 AM #11
MAT52 MAT52 is offline
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Originally Posted by mrsD View Post
Gentamycin is heavy duty but the main nasty side effect is on the nerves in the ear, and not everyone gets that.

I really don't think it is normal for people to spit up blood after singing. (and your nose bleeds concern me too).

Have you had your platelets checked?

I can certainly understand how you feel though...being so ill is very stressful and frightening. I would be a mess if it were me!
So do baby yourself so you can heal.

I was wondering where you were... but I am concerned that you were so ill and in the hospital!
Mrs D it's so nice of you to be concerned! We have just put our house on the market as we plan to move down to the Scottish mainland. This is partly for health reasons as very limited access to specialists here but also because we want to be nearer to family and work opportunities. So I really need to get myself better in order to help my husband be able to pack up and move house.

Yes I had a full blood count done on Monday after the last Gentamicin and platelets were all fine - so I can't be that ill! I get full blood count plus ESR and CRP taken again on Monday morning by GP nurse and see the surgeon again on Thursday. My GP thought that blood clots in mouth were probably from the trauma of endoscopy on Tuesday - exacerbated by singing perhaps. But someone on a Vasculitis forum suggested that, as with them I might have Wegener's Gramulatosis which might explain a lot including the neuropathy. But I doubt I'll get anywhere mentioning this to my doctors here - they will just say I've spent too much time on Google!

Do you happen to know if Vasculitis would show up in serum bloods for ivg or in a skin biopsy from calves for small fiber neuropathy? Mine came back normal but I wondered as never really seen Vasculitis mentioned much on this forum as a cause for peripheral neuropathy.
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases
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bluesfan (05-09-2015)

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Old 05-09-2015, 11:44 AM #12
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Here is a link on the various tests for vasculitis:

http://www.nhlbi.nih.gov/health/heal.../vas/diagnosis
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Old 05-09-2015, 11:54 AM #13
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I think you misunderstood what I was saying. I was talking about your regular immune system, NOT autoantibodies. IgG is the main part of your normal immune system, to fight infections. It has 4 subclasses (just called, 1,2,3,4). IgE, IgA, IgM are other important parts of your immune system.

I was talking about an immune deficiency, not autoimmune process. As in, you not making enough regular antibodies to fight infections. Autoimmune is where your antibodies attack yourself. You may have a problem making normal antibodies, as for why you keep getting sick to begin with. Then you get a drug like Imuran that suppresses your immune system making matters worse.

25% of people with autoimmune disease also have immune deficiency and don't make enough normal antibodies. You should have this checked before receiving any more immune suppressor medications, like Imuran.
Gosh thanks for explaining - this never occurred to me but I will definitely ask as it is all getting a bit scary I admit! X
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Last edited by MAT52; 05-09-2015 at 12:12 PM.
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Old 05-09-2015, 12:32 PM #14
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Default About Imuran
This may not be relevant AT ALL to your situation.

But, Imuran caused me to have acute pancreatitis.

This is a known possible side effect.

GI doc (with phone consult with my neuro) took me off as soon as he saw me so desperately ill.

Now I have chronic pancreatitis. Comes and goes. VERY unpleasant when it flares.

And, no, I am not an alcohol drinker. Never have and never will be.

Well, I admit; I have had a GLASS of wine/champagne probably once or twice over the past 10 years. At wedding "toasts".

I know PN and pancreatitis sometimes are caused by alcohol abuse.

Anyway, just a little heads up on Imuran. I now take Cellcept.


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Last edited by SoftTalker; 05-09-2015 at 02:52 PM.
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