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Kamlesh

Coming back after a while

13 posts in this topic

Hello All,
I am coming back after a while, but never forgot any of you.
Still, continue to struggle with impacts of scleroderma to internal organs. Under care of half a dozen very competent doctors. My skin is normal, but according to my doctors scleroderma is responsible for damaging many internal organs, Neuropathy pain which is extreme (almost 8-9 out of scale of 10) several days a week, scleroderma is producing scar tissues in intestines, blocking small bowl obstructions, my 2008 partial fundoplication surgery is no longer working and my acid reflux has shoot up to almost highest level, etc.

Any one with Neuropathy pain?

I have exhausted all medications for Neuropathy pain and last few which provide some relief are extremely toxic with so many serious side effects, too many serious ones to list. But, without those I will be always in extreme pain.

But, I am happy for what life has given me. Simply enjoy when I am well and I have developed ability to manage pain when I am in pain.

My meditations and faith have given me strength.

Thank you all for listening. Looking forward joining some of the chats - I am in west coast.


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

 

Thanks so much for updating us and I'm so sorry to hear that you're suffering so much with Neuropathy pain. It must be very wearing and debilitating and it's a real shame that there doesn't seem to be a medication that can help you without making matters worse.

 

As it does seem that your specialists are doing their utmost to help you, I'm afraid I can't give you any practical advice. What I can do, however, is assure you that you have our support and friendship and I'm humbled by your positive attitude to your pain and illness. I'm thinking about you and hoping that the good days will outnumber the bad for you.

 

My very best wishes to you,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Kamlesh ,

 

I am sorry to hear that your neuropathy has gotten so much worse. If you Google "Sjorgen's and neuropathy" lots of educational material will come up I know that when they said Gareth had the dry eyes/mouth, that I read a lot about Sjorgen's. One of the meds used for Sjorgen's is Plaquenil, but Gareth's been on it for years and he still developed dry eyes/mouth.

 

It's interesting to read about the affects of Scleroderma on your internal organs. Gareth just had an endoscopy and the doctor said his esophagus looked like a "silly, curly straw" due to his connective tissue disease. I will have to keep tabs on his intestines, etc.

 

Take care, Everyone.

Margaret

Mom to Gareth, 26 years old, DS/ASD

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Hi Kamlesh,

I also suffer with neuropathy pain at times; it just seems to drive me crazy, at other times it is much better. My doctor started me on a new pain medication; it takes care of the pain better then any others I have taken and the side effects are less severe than many of the others. My faith is also what keeps me going.

I also have projects that help; I am a quilter and when I am sewing I am not thinking about the pain. I also do a heat treatment every night before bed; I put it on my back for 30 minutes, then my legs for another 30; it does help a lot.

Bless you and good luck.

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Hello Kamlesh,

 

Nice to hear from you again even if it is an update on your woes.

 

I, like you, have no skin involvement only internal damage and as I get older that damage is having more impact on my general ability to keep well.   I am very lucky that I don't have any pain of any sort as a regular thing but I do get Migraines from time to time.

 

I know that I am fortunate and can't imagine having to put up with daily pain like lots of us do.

 

Keep in touch,

Best wishes

Judyt

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Hello All,

Thank you. Today, I came back from my new Rheumatologist, and according to her, Scleroderma can attack internal skin as well without any involvement from external skin. There is no treatment available right now except few clinical trials.


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

 

That comment from your rheumatologist is interesting.   I have been told before the the muscles/tissues in  my organs are atrophied and that is why things don't work the way they should.   Affecting internal skin is more or less what I envisaged from the comments I have received.   Like you I have no external involvement but I would suggest that the internal involvement is more disturbing to our health than external would be.

 

From what I have read external skin softens but does it go saggy and baggy or does it return to something similar to what it was before?   Internally I have been given the impression that saggy and baggy is more like what I have got. 

 

Oh! what fun this disorder is!!

 

Best wishes

Judyt

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Judyt,

 

Thank you and I appreciate your support.

 

I have been having Scleroderma since 1998. My earlier involvement was primarily external. My skin was thick and shining. I had esophagus involvement according my GI.

 

Now, my skin is soft and normal, it does not show any sign that I had scleroderma. However there is extensive internal involvement.


Kind regards,

 

Kamlesh

 

 

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Hi Kamlesh,

 

You say your skin is just as it was before the hardening and that is more or less what I had thought from comments made by others.   Sad  to say that internal damage is not quite like that from what I have experienced.

 

My Oesophagus is distended and baggy and there is no peristalsis, I have to rely on gravity and careful eating to get my food to my stomach.   Then when it gets there they tell me there is no peristalsis there either, once again gravity and goodness knows what else is responsible for digestion.

 

These days I have been troubled by bleeding in the duodenum and maybe other spots and that has led to quite severe Anaemia.    The bleeding, coupled with lack of adequate absorption of nutrients, is making it hard for me to maintain adequate Iron and Haemoglobin levels.  Over the past 5 weeks I have had transfusions of 3 units of red cells and 2 units of Ferritin so just now I am feeling almost human again for a while.   How long it will last I don't know.

 

As well I have bowel incontinence and although I have had several surgeries to try to improve things and have an SNS, it is just something I have to live with it seems.   During one of my recent stays in hospital I had a Colonoscopy and the Gastro who was looking after me commented that everything moves so slowly inside me that it affects what they can do in the way of investigations.   For instance a Pillcam was ruled out because it is supposed to pass through in a set number of hours and with me that might not happen and it might even get delayed to a point that became a problem.

 

What fun we have!!!

Take care

Judyt

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Hi Kamlesh,

 

I'm just dropping by to say hello, and welcome back! 

 

In fact, I'd like to use this as an opportunity to remind many of our members that it is never "too late" to touch base again. You'd be surprised how many of us remember, and miss and wonder about, those who are not actively publicly posting on the forums. It doesn't matter how much time has elapsed, our collective memory goes back for over 15 years. And if it's been so long that you've even forgotten your username, feel free to join again; and if you let Jo know, she can often find your old username and reunite us with your old messages, as well. In short, we are always happy to hear from all of you. 

 

Okay now, back to you, Kamlesh.  I'm very impressed with the way you are hanging in there, and using your meditation and faith to fill the gaps left by the ravages of illness. It's pleasant when our medications or treatments work and allay the pain or quell our symptoms. But frankly, we all know that sooner or later, there will be cracks in the system that may leave us mostly to our own wits for somehow coping with symptoms that cannot be halted, reversed, or assuaged.

 

That's when those of us, like you, who have studiously developed our emotional strength and resilience, find ourselves so grateful for the attitudes - and friends -- that we've developed along the way.  Kudos to you, for using everything at your command for helping deal with scleroderma -- and not just exclusively medical treatments. You set a fine example for us all! :yes:

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Judyt, Shelley and others, Thank you

 

I seem to have most of the problems, Judyt, that you have. My esophagus to entire digestive system has slowed down. I had severe acidity before 2008 with Demister score 72 (Normal is around less than 14). Most of the surgeons declined surgery. Finally, I had partial fundoplication done at UCSF and my Demister score dropped to just 2.

Now my surgery has failed as stomach wrapped around esophagus loses elasticity, and my Demister score has jumped to 80. The consequence of the high acidity is further damaging esophagus and lungs. I am constantly coughing, but no solution.

 

My neuropathy pain in both legs jumps to extreme every day, on top of that I developed sciatica nerve pain in right leg. These are only some of the problems to list.

I am not sure any of the symptoms are reversible.

Thank you for listening/reading

Kamlesh


Kind regards,

 

Kamlesh

 

 

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Hello Kamlesh

 

Welcome back! I remember you and am so pleased to hear from you again although not because of an increase of symptoms. Someone told me that the medical community are coming to the conclusion that fundoplications do not work for people with scleroderma and you are not the only person I have heard say theirs has failed.

 

Now pain is something I can discuss in the first person, I wish it was not. This week I had a lumbar sympathetic block on the left side and wait to see the effects of it fully manifest themselves. Should it then back I go for more of the same. Other than that it's medication and distraction. I am actually in a good place because the majority of my pain is now only flared into action with movement so if I don't walk, use my hands and so forth, it's not so bad, really.

 

I do wish that pain was more understood, more recognised, more treated. 

 

I found that heat helps sciatic pain, well it did mine anyways, that and sleeping with a folded up towel under the arch of the back with a view to supporting the arch.

 

I really am glad to see you again, I just wish it was for different reasons.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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