Desperate for help, I feel like I am dying, no exaggeration...

[daybyday]

 I am writing a short intro as I am having such bad issues I can barely type right now.

My name is Victoria, and I am 53 years old with IGa nephropathy that resulted in a kidney transplant in 2001 that lasted 5 years and failed, and was subsequently removed. I am currently on the list, 3 1/2 years now for another transplant but have many things against me, antibodies and need an O blood type. I am losing hope. I am on hemodialysis 3x/week 4 hours each session.

In the meantime, I was fine @ 6 weeks ago, then developed extreme muscle weakness and pain to the point of now barely being able to move.  I can barely wash my hair, go up steps, walk. My leg and arm muscles just give out, shaking with weakness. Even my neck muscles holding up my head are in pain and weak. I also have visual problems with blurring and a brightness to where I wear sunglasses to tone it down. I am so scared!! I don't know what is happening to me. No one should be this weak and helpless at my age. Typing this hurts very badly.

I have been hospitalized all week with no answers. They finally sent me home with the option of home health aides or a nursing home or just wait to see if something "presents itself." I cannot tell you the frustration and hopelessness I feel. They did test for aluminum poisoning which they said was high, but that dialysis patients generally have a higher reading so thay didn't think it was that.

To become this debilitated so fast, and no answers, I am in so much distress and wanted to see if anyone else may have experienced this. Any help will be so appreciated, as I am getting extremely depressed right now.

I will write more as soon as I am able as to a more social post, but am so desperate for help right now.

Nice to meet you all, Victoria

[kristina]

Dear daybyday,
I had a similar experience and it was due to an MCTDSLE-flare-up.
I was also extremely weak and photosensitive during that flare-up
and needed to wear sun-glasses at all times.
Fortunately it was a flare-up and went away again after a few weeks.
But it was frightening all the same!
The most important thing for me was to keep as calm as possible.
Of course I don't know your circumstances
but I wanted to let you know I wish you all the best.
Take care! Hopefully someone else might be able to tell you more soon.

[thegrammalady]

i'm sorry i don't have any answers, but i do have hugs   

[Ken Shelmerdine]

Kristina's post seems to give a possible answer. I'd mention it to your renal clinic and tell them to test you for it.
 

[kristina]

Hallo, daybyday,
it is me again with another quick note.
I have had flare-ups of MCTD/SLE with photosensitivity
and muscle pain, neither of which could be diagnosed
(don't worry about that), and I have found
that it was important for me
to keep life's stresses to an absolute minimum if possible
(because stress causes flare-ups),
and to keep away from fluorescent lights (UV-rays),
to have filament bulbs for my lighting,
and to relax as much as possible
with perhaps hot baths, hot water-bottles etc.
I do hope some of these ideas may be helpful,
I wish you all the best and I understand precisely what you are experiencing.
Good luck and all the best!

[daybyday]

Thank you so very much all of you for responding. I have no idea what that is but will research it right now. I have been in tears of frustration so much because they cannot diagnose anything, and I am NO hypochondriac. I know when something is very wrong with me.

My doctor had in the past said try L-Carnitine (I have sever muscle cramping even on off dialysis days)

I am off now to see what this is you wrote about, I am so very curious.

Will be back soon, thank you again!  Hugs to all

[kellyt]

Sounds miserable!    

[monrein]

 

[KICKSTART]

Its probably not much help to you right now , but way back i had something similar and straight away we think ' kidney related' but as it turned out i had 'shingles!' I felt very much like you do now and i know you get a rash/blisters with shingles but it took mine nearly 2 weeks to come out (on my back) and that was when it was diagnosed ..up to then the doctor didnt know what was wrong. Hopefully you will get a diagnosis soon , but dont think the worst cause it isnt always 

[G-Ma]

 

[kristina]

Hallo "daybyday",
I don't know whether this would apply to your situation:
in my experience of muscle-pain blood-tests for muscle inflammation have shown raised levels of CK (Creatine Kinase)
which is an enzyme in the muscle. In my case, and typical in MCTD/SLE,
the levels recorded often may be not that high and some doctors tend to dismiss the existence of a problem.
This might be the case in people without MCTD/SLE
but for people who suffer from these diseases it is often the case
that blood-tests do not reflect the true severity of the symptoms.
So, you may be in great muscle pain but your blood-test might not reveal that much,
but don't let this throw you.
It is also the same with photosensitivity,
which is NOT to be confused with photophobia.
Photosensitivity can affect the surface skin
but it also can go deeper and act systemically.
I do hope, you feel better soon,
kind regards and best wishes from Kristina.

[daybyday]

Thank you all so much for all this information. Your time and depth of answers is so much appreciated.

I just returned from my doctor who ordered yet more testing including RF, RPR, Lyme antibody, TTG/(can't read-antiglandin?), anti RO, Anti La, Hepatitis C, HIV, blood porphyrins, and blood heavy metals. From what I can tell some of these are for possible autoimmune things? Still have outstanding cortisol and myasthenia gravis tests, and if they still cannot find what is wrong with me I will go crazy. The pain and weakness is so intense, every hour seems like a day.

He did give me Cymbalta to try in the meantime for the pain, said it often helps with neuralgias? neuropathies? of unknown cause.

Now is a waiting game as I dread each day, as being an active person who now takes a couple hours to drag through daily hygiene is so frustrating. Then what to do, lay in bed? Painfully try to do minimal activity? (even brushing my teeth takes bracing my arm on the countertop and taking breaks) I am so in awe of those that deal with this each day with such good attitudes.

One good note, Johns-Hopkins has agreed to evaluate me for transplant and will work with me financially on the 20% co-pay. Hope at last? But with all this going on idk what will happen now.

Hope everyone has a wonderful day, and ty again..HUGS to u all! 

[Swee_tone]

 
I have IGa nephropathy as well. I hope you are feeling better soon.

[glitter]

Hi- I hope you feel better soon...

[daybyday]

Hello again! All I can say is I hope no one else has to go through this frustrating batch of symptoms with no clear answers.

My dialysis nephrologist finally said we need to just bite the bullet and forget about the whole antibody issue and do a 2 unit transfusion. I readily agreed bc I could barely function. I was so excited for it, and when the day came I thought I would go dancing out of dialysis a new woman. Didn't happen.

I have felt slightly better, but am no where near normal at all. The extreme weakness in my thighs, my arms, shoulders, is debilitating. I go back June 4 to my pcp to see if any of the tests revealed anything, but I am not holding out much hope, bc I would think if they had he would have called.

If this is my new self, my new life, idk how I can handle this. I truly don't.

I did get my catheter out today bc it was yet again infected, so will totally depend on my buttonholes-in-training. I don't think my center lets the patients do their own. Will ask that.

Anyway, trying to keep my spirits up even as I feel I am fading away, and I thank you so much for this board. Wonderful ppl here. 

Hugs to u all, Victoria

[KICKSTART]

I really dont know what to suggest because it sounds like you have had every test going?  As for blood transfusions well no they dont make much of an impression do they . Just out of interest whats your Hemoglobin ? I have had similar but not as bad symptoms when mine was down to 7.1 , so maybe its worth finding out?

[greco02]

I would like to know what MCTDSLE is?  Thanks...I have learned so much on this site, everyone has been terrific sharing information with me.   

[G-Ma]

My body is such that when I get blood transfused they immediately have to give me iron as well and that still takes a few days to feel better.  I know you are tired of all of this but check and recheck..perhaps another Dr.  Please let us know how you are.       

[kristina]

I would like to know what MCTDSLE is?  Thanks...I have learned so much on this site, everyone has been terrific sharing information with me.

Dear Greco 02,
to answer your question, MCTD is Mixed Connective Tissue Disease. It appears as though the antibodies (the police in our body) attack good tissue as supposed to just defending the body against outside “predators”. People with this disease never know when the good tissue is going to be attacked and where the attack, or attacks will take place. An attack (or MCTD-flare-up) can be simple and short-lived or, at the other end of the scale it can be life-threatening or last for years. Of course organ involvement is the worst. The inflammatory action which is a response to an attack can be most serious if it hits the brain, kidney or heart, but this disease, being a tissue-disease, can affect any part of the body, even the blood and cell-wall and veins. So haemorrhages can also be a huge danger. There have been described other types of auto-immune disease like Lupus, Sjoegren’s Syndrome, etc., but MCTD is the most complicated and complex type. There are other ailments which often accompany this type of auto-immune disease, but I don’t know the scientific relationship, for example, it is often seen that drug-intolerance (=hypersensitivity to medicines), allergies and photosensitivity accompany MCTD and Lupus (SLE).  But what this has to do with antibodies attacking the body I don’t know. So MCTD is an extremely complex disease with many faces. It is very common that patients exhibit their own particular type, or pattern, or group of problems in this disease. Therefore some patients can have a very rare form of the disease and that is where I come in. As a teenager I suffered my first kidney failure, then later I suffered cerebral haemorrhages and then a CVA-stroke and now end-stage kidney failure and a multitude of other problems resulting from MCTD-flare-ups. In my experience of myself and talking to other people with auto-immune diseases, stress seems to be a very potent trigger for flare-ups. It is said that in something like LUPUS (SLE) nine of ten sufferers are female. In my experience I have not yet come across a doctor whether a family doctor or a specialist, who can take on and face the tremendous complexity of this disease. I very much appreciate that doctors are experts in diagnosing and suggesting a particular form of treatment for the ailment, but with MCTD such a simple procedure is not possible. A doctor must be a free-thinking medical expert who has the qualities of patience, the characteristics of a detective and the belief that they only know very little of how the body really works and that they have a desire to learn more. Doctors cannot deal with this disease by merely learning the medical books. They have to be able to combine all these other qualities in order to begin to deal with this disease. I have had many doctors literally throw their hands in the air and say to me “what do you want me to do”. This is a very frightening and devastating situation because I am relying on doctors to help me. I can understand their position because they have only studied the books and they have only learned to identify symptoms, give it a name and provide a known solution, but MCTD is so complicated, it completely throws the very organised mind of ordinary doctors. The characteristics of MCTD are sometimes so bizarre that doctors have to step beyond the confines of their current medical knowledge. For example, generally doctors never bother to talk to a patient’s spouse or partner, but it would be extremely useful if they did so in the case of MCTD because people who live with those suffering from MCTD are used to all the flare-ups and manifestations etc., which accompany this disease and by talking with the patient, their partner and perhaps others doctors might begin to appreciate how devastating this disease is and begin to think of ways of helping patients. I don’t know why, but people with MCTD and SLE (Lupus) often suffer with kidney problems. This is why I am contacting IHD because my kidneys are now failing and I don’t know whether it is avoidable, because it might be a flare-up or whether it is an unavoidable deterioration of the kidneys leading to Dialysis or transplant. I have been trying to find a doctor with those characteristics I have mentioned above to work with me and my husband to see if my kidney failure can be stopped. I am still searching to find a doctor who is able to face the complexity of my rare form of MCTD and not just to face the kidney failure alone because it could be a  flare-up destroying my kidneys right now. I know that you can read about MCTD if you google but I wanted to mention some points you might not read about in scientific documents about this devastating disease.

[Sluff]

Wishing you the best.   

[okarol]

 
For Victoria and Kristina

[hurlock1]

I am writing a short intro as I am having such bad issues I can barely type right now.

My name is Victoria, and I am 53 years old with IGa nephropathy that resulted in a kidney transplant in 2001 that lasted 5 years and failed, and was subsequently removed. I am currently on the list, 3 1/2 years now for another transplant but have many things against me, antibodies and need an O blood type. I am losing hope. I am on hemodialysis 3x/week 4 hours each session.

In the meantime, I was fine @ 6 weeks ago, then developed extreme muscle weakness and pain to the point of now barely being able to move.  I can barely wash my hair, go up steps, walk. My leg and arm muscles just give out, shaking with weakness. Even my neck muscles holding up my head are in pain and weak. I also have visual problems with blurring and a brightness to where I wear sunglasses to tone it down. I am so scared!! I don't know what is happening to me. No one should be this weak and helpless at my age. Typing this hurts very badly.

I have been hospitalized all week with no answers. They finally sent me home with the option of home health aides or a nursing home or just wait to see if something "presents itself." I cannot tell you the frustration and hopelessness I feel. They did test for aluminum poisoning which they said was high, but that dialysis patients generally have a higher reading so thay didn't think it was that.

To become this debilitated so fast, and no answers, I am in so much distress and wanted to see if anyone else may have experienced this. Any help will be so appreciated, as I am getting extremely depressed right now.

I will write more as soon as I am able as to a more social post, but am so desperate for help right now.

Nice to meet you all, Victoria

Vicky,
In the first place, Try just not being scared. It's your choice. I know that that sounds just silly. I am scared of getting a transplant just because of what happened to you with your transplant. I am 60 years old.  I am on hemodialysis 3x/week 5 hours each session. Don't sweat the small stuff. The secrete is, comparatively, it's all small stuff. I am weak, so weak that when I lean on my cane, my hand shakes and people ask me if I'm all right. I keep a chair in the bathroom because after I take my shower I have to sit down (or fall over)   I have three steps coming into my house that I dread climbing or descending. (every time) I Need sunglasses, but I either lose them or break them shortly after getting some shortly after getting them. So, How am I doing? GREAT!
 I'm not saying this to belittle you. I'm just saying that there are people in here probably doing much worse than you or I (eve if it's had to see) that encourage you to feel better. I am trying to encourage you to decide to feel better. It's a tough life we live. It takes tough people. If it was easy everybody would want to do it? LOL But seriously, Most of us a weak, most of have pain, most of are light sensitive. In my case, sunglasses alone don't do the trick. I need polarized sunglasses. At walmart the cost $18+ I am thinking about getting some Prescription sunglasses thinking that maybe I'll take better care of them, but I don't know if they make polarized prescription sunglasses, I'm thinking that they just coat the lenses, kinda dye the plastic, I don't know. As it is, my copay for Rxs is $10 for generic and supposedly $20 for non-generic I have 2 Rxs that are $40 (one is the binders) I take a mouthful of pills every night, and none of them are fun. I feel weak lousy and am sick of neuopathy in my hands. I'm to young for all of this crap! But, How am I doing? Not horrible.

[glitter]

Very informative- thankyou for posting that.-Julie