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#1 manny


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Posted 13 June 2008 - 06:30 AM

Hi everyone.Its been a week since I last posted a message.I am very thankful to all the wonderful responses, and advice given to me.Thank you for all the support.

It can be so frustrating of not getting a diagnosis.I been dealing with scleroderma like symptoms for almost a year not and no definite diagnosis yet.Its not like I did not try taking care of this problem.You can see my pevious posts of what I been through and what I done.I hope I can reach I can reach a diagnosis soon so I can treat this properly and alleviate the pain.

I have a postgtaduate exam to take in couple of months and can't even find the strength to sit at my desk and study for it.I quit my job because of this of feeling so ill.I'm a young guy and have alot of goals to acheive.I want to go on with my life normally like everyone else.I want to get a good job,get married and have kids.I don't want to feel paralyzed and sick everyday.I guess the most frustrating part is not knowing what you have and feeling useless as everyday goes by.

The pain is so unbearable.I know I mentioned some of my symptoms before,but I just wanted to share an update.I wake up in the morning and feel like I'm at war with my body everyday.My palms and toes constantly hurt throughout the day as if they are burning.The palms appear edematous and are stating to feel leather like.For some reason if I over exert myself physically like walking and then sit down they burn even more and start to shine and look as if if there was oil dropped on them.In the begginning I assumed the shinniness was due to palmar hyperhidrosis (sweating).But I examined them closely and don't find any sweat or secretion.The shininess will go away after a while when I'm rested.

Also my fingers start to stiffen up and feel like they want to curl inwards after a brief period of exertion.Such activities like typing or writing.I constantly have to extend my fingers outwards every once and while after I type a few words.Another thing is when I'm driving and hold the steering wheel for a long time and let go after an hour or so my palms start to ache and visually I can see the reddness of the pressure from holding the steering wheel remain for while before thet return to normal color.The same happens with holding objects for a long time like a soda can.

Along with the pain,I feel ill throughout my body.Its kinda like the lethargy and weakness seen when you get the flu.I feel like all the energy is drained out of my body.I feel like that more often in the morning after waking up as if I worked a 12 work hour shift.Normally,one should feel energetic and well rested after getting up in the morning.I'm waking up late because its so hard just to get out of bed.

Sometimes I get shooting pains in my body.It will just happen in an uncommon place like my thigh or arm and then go away.However,the pain that I costantly get is in my palms,fingers and toes and that type of pain is burning in nature.

Just recently I'm getting alot of jaw pain.When I open my jaw or clench it as if I was grinding it I can feel alot of pain.The pain seems like it coming directly under the earlobe and radiates toward the chin on both sides of my head.It happens more often while I open and close my mouth.At the same time the pain spreads to my ears as if they are congested with fluid and feel like they are ringing.Sometimes at rest I can feel the jaw bone getting numb and stiiffenining up.I can feel a little restriction in the mucles while opening my mouth now.It feels tighter to open my mouth and articulate words.Sometimes at rest my head and neck feels stiiff and tired in an upright position.I contantly have to rest it on the headrest while sitting on the chair.

I'm also getting alot of shoulder fatigue on both sides.I mentioned in my previous posts that I felt as a tingling in my tendinous sheaths of the both forearms (area opposite the elbows).Its easier to describe how it feels than it looks.They feel alot more tight and tingling in nature.I feel I have to keep extending my forearms straight out like I was feeling with the fingers.If I'm typing I have my forearms bent inwards.Then at the same time I can feel this moist stiffened feeling in those tendinous areas on both forearms.I then flex my forearms outwards as if I was reaching out to grab something to get rid of that wet feeling.

I still have the lung related symptoms.I constantly get short of breath with physical exertion like walking up and down the stairs and sometimes at rest.Actually everything started with lungs before I started feeling any of the other rheumatic symptoms like pain in my fingers and toes.Along with the shortness of breath I get this sharp bilateral intrathoracic pain coming from my ribs.I guess the only abnormal test revealed was from my lungs besides having normal rhematologic blood work done (ANA negative) My pft's revealed a mild restrictive pattern along with a low DLCO.The broncoscopy revealed extensive diffuse ground glass opacities consistent with organizing pneumonitis,bilateral posterior pleural thickening and mild fibrosis at the bases of the lungs along with mediastinal lymphadenopathy.The pathologist mentioned that the report could be used to describe chronic alveolitis (inflammation in alveoili). That was a year ago.My current ct scan of the chest done a month ago shows the abnormalaties remain unchanged.The only thing that was gone was the opacities resolved from being on prednisone.Everything else is still there.It seems like an active process as if there was something like another disorder driving the lungs to flare up. Being that it appears to be an active process as well as the radiological abnormalities to remain unchanged I guess that's why pulmonolgist believed my lungs were secondary to a rhematic disorder.

In conclusion if all these symptoms are not related to scleroderma then I don't know what to think.I am no doctor so I can't really diagnose myself.There are so many other systemic diseases that appear similar to sytemic sclerosis,such as systemic amylodoises,werners syndrome,poems syndrome and etc.Alot of the pareneoplastic syndromes manifest as rhematic disorders similar to scleroderma before a malignacy is apparent.Alot of them are rare disease so its really hard for a general doctor to diagnose,unless you go to a university hospital that does alot of research on rare disorders.I guess the university hospital remains my last option to go to if the rheumatologist that specializes in scleroderma believes its not related to scleroderma.But I will still have to wait a couple months before seeing her so in the meantime I guess I just have to deal with this in the meantime.

The hardest part is dealing with the uncertainty of what you have and tirelessly losing for an answer.But for now I guess I can get that nailfold capilaryscopy done.Again,if anyone can advise me where to go to get the prcedure done and how to go about it please lt me know.Thank You.Also for those who have scleroderma please let me know if you have similar symptoms.Than you.

I know many of you advised me to see a rheumatologist specializing in scleroderma.I found a female doctor in my area,but the problem is I don't have any insurance.It costs almost $400 to schedule an appointment so I can't really afford it right now.I think my best bet is to apply for medicaid or save up some money.Also,the other problem is the next available appointment to see her is in four months.

Many of you also advised to get a nailfold capillaroscopy done besides having a negative ANA to rule out if I have a connective tissue disorder like scleroderma.In the meantime I rather get that done before waiting a couple of months to see the rheumatologist.I don't know where to look to get that done and how to go about it.Do I need a doctor's order to get it done or can I get it done privately? If there anyone here that knows a clinic in northern New Jersey or anywhere in New york City that does such a procedure then please send me the link.I would sincerely appreciate the favor.I know a doctor can help me find the place and order to get the procedure done,but the problem is I stopped seeing both the pulmonolgist and my previous rheumatologist because they were unable to help me diagnose of what I have.

#2 Margaret


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Posted 13 June 2008 - 09:47 AM

Hi Manny ,

If I were you, with no insurance and feeling as bad as you are, I would get myself to the nearst ER (preferably when your symptoms are the worse) in a well known teaching hospital. Tell them exactly what you have told us. Because you are a student, you need your strenght both physically and mentally. There are meds (like Plaquenil) that can be prescribed and can be bought generically. Please, don't delay treatment. Sclero is a rare illness and any teaching institution should be willing to take your case. Just my two cents worth, but it hurts to read that you are in so much pain and have no insurance or doctor to go to.

Take care, Everyone.

#3 jefa


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Posted 13 June 2008 - 10:01 AM

Hi, Manny. Thanks for letting us have an update. I have no ready answers for most of your questions, but I wanted to share this link to our page on Disability Resources which may help you.

It probably would have been better if you didn't just quit, but that doesn't mean you won't be able to still get some help. I am in the UK, so someone else will be better able to help you find the local resources available to you. I would see the scleroderma specialist you found out about if it is all possible. Perhaps you can make the appointment anyway, even if you don't yet know how you will pay for it. At the very least, you will have saved some of the waiting time.

I know that having a precise diagnosis seems very important now, but the most important thing is to get treatment for the symptoms that have been identified to date. Many of us don't yet have a diagnosis. I believe someone said that the average length of time to diagnosis is 6 years for women, less for men. Even if you were able to get a nailfold capillaroscopy, it might not show anything. A negative ANA will also not necessarily rule out scleroderma. If you can, try to get back into some kind of treatment situation with your rheumatologist and pulmonologist. Good luck.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#4 truman


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Posted 13 June 2008 - 10:29 AM

In agreement with Jefa and Margaret, if in the US, go under "charity care" and get some answers. ER is a good start, as they may find enough to admit you which could at least give you enough medical care to get some answers.

It is what it is...........

#5 anonym4444


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Posted 14 June 2008 - 07:02 AM

Dear Manny,

I can hardly help in recommending what to do best in the US to get diagnosis...but maybe it consoles you to see, that there are more out there that have exactly the same problem elsewhere.
I find it amazing to see your description of your hand problems as they so much equal mine...yet I have visisted a dermatologist yesterday and despite trying to explain him my other symptoms which all fit to scleroderma very well, he did nothing than taking a mental note, that I am yet another hypochonder...

Puffy fingers (I brought my wedding ring that fitted 15 years and currently has no chance to get it on), Sicca, and some other things like tendon problems did not really make a difference and the guy was a so called ANA expert for scleroderma...I told him, that so far no ANA were found and that I did not have Raynaud which is the truth...and that lead him to the conclusion that then I do not have scleroderma....as Raynaud would have to be there well in advance of limited and ANA as well....and for the real bad form (diffuse) the skin stuff should start at the body....(I do not know what some other scientific reports here on this site tell you...but systemic I read may well start with puffy fingers...). And as far as I read here many times, not 95% have ANA from day 1 or before, but mostly it kicks in much later...so not having them doesn't really mean to much after 1 year only....

So I am in the same boot....I know there is something severly wrong, it all fits to scleroderma very well (diffuse) and yet no chance of getting any diagnose without ANA and without Raynauds...or some other severe symptom that I luckily do not have yet.


#6 Margaret


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Posted 14 June 2008 - 08:19 AM

<<yet no chance of getting any diagnose without ANA and without Raynauds...or some other severe symptom that I luckily do not have yet.>>

K and Manny ,

From Oct. '06-June '07, my son had the + blood work for Sclero.....ANA (1:80, speckled pattern, diffuse cytoplasm) and positive Anti RNA Polymerase 1/111.....esophageal dismotility, restrictive lung disease, major fatigue, and loss of vocal cords. The doctors all 'thought' sine Scleroderma, but in the end, he has the diagnosis of UCTD because he doesn't have the Raynaud's or skin issues. It really doesn't matter the diagnosis, per se, it matters what drug they put you on and whether the symptoms subside. Plaquenil worked wonders for my son and he's doing fine now with no majors symptoms at all.

Take care, Everyone.

#7 Snowbird


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Posted 14 June 2008 - 12:51 PM

Hi....my tid bit!

I was diagnosed with Systemic Scleroderma Limited/CREST...and I don't have Raynaud's, yet anyway...but my ANA was positive for CREST, centromere pattern. You're right, Raynaud's does not always precede the diagnosis.

My Rheumatologist examined my nail folds under a microscope of some kind with a light on it...he didn't use the oil on my nails though like some have had done.

Like the others mentioned, just keep trying to treat each symptom...and I would move on to a new doctor if possible, if that's what it takes to get help. It's important that you connect well with your specialist no matter what the problem might be. I agree with the others, try to make your appointment and hopefully, by the time you get it, you will have figured out a way to pay for that borrowed time.

I hope you keep on posting and keep us updated!
Sending good wishes your way!