PNH suffering

Hi

I was diagnosed with PNH benign about a year and a half ago. My potassium gaite was extremely high and Nerve Conduction tests also confirmed this the condition . I am being treated with carbamazapine tegratol and gabapentin. Other brands of carbamazapine seem to go right through me and cause no end of worries. It did take some convincing my GP what I felt the cause was.

My gp attitude is its benign no need to worry.

Since, the potassium gaite has normalised , I assume this is the tegratol, however the pain , cramps and spasms seem to be getting worse despite being benign.

It has always been the lower half of my body in the last 6 months my arms chest and shoulder are agonisingly painful , and simply getting a tea spoon from the drawer is so painful , yet I can lift 25 kilo.

This would seem to onlookers that the pain was when it suited me and it's really not .

Work is my escape , it relives the burden from my partner but also distracts, I can still do my job but It's still painful, it seems to be less affected by the micro movements I make .

I feel so alone sometimes with it all I feel like i look so fit and agile yet under the surface I hurt so much and feel so depressed and stressed that some days every movement almost reduces me to tears, which in turn on occasions can really affect my emotionally .

I have read so much on here today you all have made me feel like i am not alone and there are people who do know and do understand, I am not alone .

Thanks to you all

10 Replies

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  • The term benign can feel terribly hurtful and innappropriate I know. How can anything be benign if it makes us immobile or stops us from living a full life?

    I too suffer from a type of neuropathy. Neurologists blame RA and rheumatologists say it's not RA because mine is serognegative and SFN is very rare with this type. To be honest the pain of mine has gradually eased over the years but has caused some permanent loss of sensation now - which in turn gives me proprioception problems so I can't judge surfaces or spaces always - or keep my balance if I turn my head quickly.

    When the pain was severe it used to feel as if I was imprisoned - turning into stone with bone and burning nerve pain. I still sometimes have flares of this same pain but it's not quite as scream worthy. The neurologist told me that I look too well to have a multisystem disease in March. This is what doctors said to me last year despite my suffering from pneumonia, pancreatitis and sepsis! Someone I was in hospital with told me that those of us with autoimmunity sometimes look extra well despite feeling dire because our immune systems are overactive and this can give us a false sheen. Not sure about this but it does feel as if we are being punished just for fighting with our immune systems and trying against the odds to keep going.

    I wish you could give "it" to your GP to try for a day or two and see how benign it felt to them! I can't tolerate any of this family of nerve pain drugs so am always looking for natural alternatives such as B12 and magnesium supplements. Some people find going gluten free helps enormously.

  • I feel I want to punch the sky today, thanks for you words of support and the reassurance that someone somewhere does understand and can relate .

    I seems you have had a right old time of it. I wonder how your none pharmaceutical approach has helped.

    I feel site this is what i have been searching for for a while .

    Origjnally I went to the GP with white fingers and little or no feeling in my hands and feet. Using a tablet would send minor electric type shocks up my wrist and arm, and the numbness was unbearable in my feet. They put this down to Reynaulds, with a view to the problem in my knees being arthritis .

    After seeing a wonderful Polish consultant she was a little confused as none of the above were present at all. She was brilliant , made me feel at ease as she could and sent me for nerve conduction tests.

    I was then prescribed Tegratol and the numbness and tingling and white fingers vanished . And this is where the condition had developed . The "ticks" as i call them "jerks" and jolts never really stopped but probably became more frequent .

    I have been having folic acid and some d supplements . However I really feel the Tegratol made quite an impact as far a controlling some of my symptoms.

    Can i ask how long you have suffered for. ?

    Regards and thanks again.

  • No trouble at all - I always relate strongly to others with uncertain diagnosis for horrible symptoms.

    Mine started prior to onset of seronegative RA in 2011. The hot flashes/ surges in my arms/ wrists would come and go for at least a year prior to this. Then, with the RA would come lightening bolts of pain through my wrists and hands - I'd feel really nauseated by them. My GP gave me Sulfasalazine which I had a severe allergy to and then steroid injection with Amitriptyline. After RA diagnosis I was put on oral and then injectable methotrexate and two other DMARD medications. I could tolerate none finally - had anaphylaxis to Hydroxichloraquine and pancreatitis last year from Azathioprine and Methotrexate made me sick although I suffered it for two years.

    I have also tried Pamiprexole, Gaberpentin and Duloxetine - all of which either hospitalised me or made me go nuts - or both!

    Meanwhile two neurologists have suggested my issues were part "functional", while acknowledging that my inflammatory levels were too high for this all to be a product of my imagination - so blamed RA for the rest. Rheumatologists test and test but seem unable to find a cause for inflammation so far - but I'm getting a lip biopsy to test for primary Sjogrens soon. They won't treat me unless the synovial joint swelling returns though - apart from these anti-convulsants and anti-depressants which I'm equally terrified of now!

    I had a lumbar puncture last year which showed paired oligoclonal bands, indicating something more systemic is causing my small fibre neuropathy. My ANA is positive now but this could be a false positive so I'm having lip biopsy in order to verify. I've had a few biopsies around my body and nothing has yet shown up to indicate Lupus but we will see.If not Sjogrens then the latest idea is possible Vasculitis or a very rare type of seronegative RA. I haven't liked the neurologists much I must say but the rheumatologists have been far less dismissive.

    You don't mention what type of consultant you've been seeing? There are inflammatory neuropathies which can often relate to certain connective tissue diseases. Hope this is helpful. Twitchy

  • Neurological, I have a meeting with him next week , he priviously mentioned seeing another consultant I am not sure for what .

    I must admit though that I think I have spent a lot of time in denial of what is going on for the last year , taking my GP advice and not worrying about it literally. I am Not sure how much good that has done me physically and emotionally. I am only really paying attention to my own condition In the last few months. My own fault may be, but the "don't worry" advice is a complicated tool when given out incorrectly . I am over that now and need to stop worrying what others think , focus on me and get to grips with "the new me"

    Thanks

  • I agree that being told not to worry and acting on it means that anxiety is less likely to exacerbate things if your problems are autoimmune. Worrying isn't exactly effective or purposeful most of the time.

    But not worrying isn't in my nature - no matter how hard I try to relax and take my mind off it all - I am simply a born worrier! The plus side of this is that I channel my worrying into research and into my work as an artist and I think it has helped keep doctors on their toes as well as I have a terrier like disposition and won't let go until I've got to the bottom of my bizarre symptoms!

    By not investigating your symptoms as thoroughly as possible, your GP has ultimately postponed diagnosis and has caused you more stress and anxiety now, as the realisation that your symptoms are slowly progressing makes denial impossible.

    If I were you I would request bloods to be taken for autoantibodies (inc lupus) and inflammation and request to see a rheumatologist if possible too.

    You may also find NeuroTalk - which is a world forum - as helpful as I have.

  • Is neurotalk another thread in this site please ?

  • Wow ur an artist ..

    I do mutimedia and sound installations using found technologies .

    I studied how frequencies affect the body as my focus at uni ( a long time ago)

    You just inspired me..

    Just by writing this I see how I can turn my condition into a piece.

    Synchronicity at play ...

    Omg I have become emotional 🙏🏻

    Yet another angel affects my day .. All from one wonderful forum ..

    I am blessed

  • Awesome! There is so much inspiration to be derived from things neurological if you set your mind to it.

    Neurotalk is different to HealthUnlocked. People are staggeringly knowledgeableon there about the workings of the brain and nervous system (here too but it's more for emotional support That we come here) but then I think knowledge is power! X

  • I worry way too much in general and I think fight or flight kicked in and I chose to fly .

    Normally a fighter so clearly I am emotionally affected and probably quite depressed .

    This forum has really mad me feel I am not alone and has really kicked me up the backside to start getting real .

    X

  • I think there are some things that are too massive for us to take on board at first. Actually I think I need some denial just now with possible rediagnosis around the corner and my lip biopsy tomorrow morning! X

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