New here- need your help and support, auto-immune/neuro-muscular?

[jayejaye]

Thank you so much for sharing that bit of info... I'm 32 years old and have been diagnosed with sjogrens for about a year and still just tryn to figure out things. Doctors having been able to tell me anything other then you have sjogrens and use eye drops and chew gum or suck on hard candy for the dry mouth which is a problem but not as much as my joint pain. Do u have anymore helpful info?

[Iwantmylifeback]

Joe thank you!  Very interesting..will read up on that one and store it away, lol
No black walnuts for me though, English all the way!

[quietdynamics]

Black or English walnuts are often used a parasite cleanse.

Joe, I buy Papaya and use the skin to exfoliate and the seeds can be used for parasites. The seeds taste like mustard and have to be chewed. Of course I eat the fruit 

[scarlett6]

Hi Ana:

I believe that the EMG/NC studies are mainly for damage to large nerve fibers or tracts. Someone correct me if I am wrong here. Anyway, I think your Neurologist might do an intrapidermal skin punch biopsy to take a look at the density of and condition of small nerve fibers, if you ask. It is a simple one, easily done in the office.

I have been on Prednisone now for years, which has helped with pain and weakness. I think what first helped with my muscle weakness were the rounds of IVIGG's given back in 1993-94.

Your post made me think of a lot of things I had put in the back of my mind. I do plan to ask my Rheumatologist about repeating the IV"s when I see her this week. My symptoms were quite subtle in the beginning. In 1992, they arrived kicking and screaming. Venus will NOT be calling me to practice with her anytime soon.

Cathie

[Gayle]

JayJaye

Are you on medications? It is hard when first diagnosed to know what you should do. If you feel your dr's are not providing enough info or help, find a new one. Best of luck... Glad you found this site, you will find a lot of answers here by smart, amazing people who 'get it'.
Gayle

[anabanana]

Hello everyone and thank you so much for your responses, supplement suggestions, and questions about my specific circumstances.

Things have been so turbulent, stressful, more testing, that I forgot about this post.
Seems that the stress and the illness is affecting my memory.
I will post more later...

Currently in short:
-4 months later the scleroderma test was low (10) from the last SCL-70 (105, I think)- not sure which to believe, and I feel that I should repeat this one again (any thoughts?)

-I have not had a small-fiber skin punch biopsy- but I will ask for one-great suggestion.

-I will bring up muscle biopsy, even though the rheumy claims that a negative EMG doesn't give us much to work with when looking for a spot for muscle biopsy, but I will push this year. Hopefully the muscle biopsy is not too bad,I fear that one

-My Ferritin is 19 and 16%-iron saturation. I am starting iron for 6 weeks to see if it does anything positive.

-I am not currently on any meds (just D3-4000 mg(originally low)/calcium citrate/b-vitamins).
The Rheumy I see is more artheritis focused but has stuck with me when the neuros didn't want to deal with me(and sent me for lip biopsy/SJ evaluation), and has been liberal in lab tests (but not assertive in my opinion on thinking too hard on what could be driving my illness). We talked about trying Planquil(sp?) as a tool to see if there is a positive effect. This is on hold now because of the following, and I agree:

-I had a spinal tap after pushing for it hard (even though this last neuro wanted to back out of their offer to send me for one- they suck!).
Finally I have been validated: the CSF analysis showed restrictive bands(I think it's the same thing as oligoclonal bands?) in my spinal fluid and my blood (the origin cannot be determined according to the lab that tested it-whether coming from blood origin or spinal origin). What's real lame is that this neuro would not explain the meaning of the results to me, so I have to wait unit my appointment at a MS clinic, very pathetic, let me suffer longer why don't you...

So this is what's been happening since I posted last, a lot to take in mentally. But I've already known for 2 years that something was wrong, if only the first two neuros did the spinal tap, a lot of time lost and stress could have been avoided.

Now I am wondering what else immune driven, disease, pathology, infectious, could cause these spinal tap results(besides MS)?

Thank you for reading and please share your knowledge, insight, and experience with me freely.
I truly appreciate this communities input

[Tivia]

Ana, I know how you feel. A few years ago I had terrible tremors weakness and muscle wasting, it got to the point I couldnt support myself sitting up and walking was like a drunk. At that point I had already been dx'd with Graves disease, and the first thought in my doc head was its your thyroid. Well after the tests the thyroid was still in remission so it wasnt that, we then went on to check adrenal fatigue since many of my symptoms were also symptoms of that.

That came back neg, then the doctors pulled out the big gun tests, at this point they were thinking MS MD or some major brain/neuro disease. The ideal of a CJD disease even entered the convo at one point, since I live in an area with a lot of livestock. Radiographs, MRI'S with and without contrast, CT scans blood work for just about everything...the next step was a brain tissue biopsy, and a spinal tap.

I was deathly afraid of those procedures..but resigned that it would have to be. Then while getting ready to make the date for the procedures..which required a trip to St.Louis 3 hours away, things just kinda started to get better. A few days later I was feeling stronger and its like just as suddenly as it came on it dissipated. I started to rebuild loss muscle mass and strength.

My doc was absolutely astounded, because they had even measured the muscle loss and withering. We never know to this day what it was...long story short I am betting it was the start of sjogrens or somehow related.  God the body is frail and amazing and strong all at the same time, it really is so complex and until I became sick with Graves I never really thought about it.

[irish]

I had a muscle biopsy back in 2004. It is usually done on the thigh under anesthesia---mild IV anesthesia. They need really good muscle relaxation to get this biopsy. Also, make sure that you find a good surgeon that does these biopsies a lot as they are very tricky to do. Not everyone has enough experience to do it.

I had mine done through the U of MN doctors and they said there were only 2 docs in the twin cities that they use to- do the biopsies. It takes about 4-6 weeks for the results to come back from pathology. Not painful at all really. Not much for us to do as the doc has the big job. The incision is about 3-4 inches long as they have to separate tissues, etc to get a good view of the muscle for the biopsy. I think that it is very worthwhile having this done as it sort of rules things out. Good luck. Irish

[MaryBee7]

It took me 7 yrs to get to this point....I haven't had alot of help from Nueromuscular specialists.. all I can say
the emg is not conclusive the problem is the drs like to act like it is. they seem to be very black and white in their thought process.
[/quote]

I think if you have a true wish/drive/faith to pursue these specialists, do.  I agree that some have this Black & White thinking.  My EMG was done just a week or so ago.  Neurologist replied so quickly and dismissively when I asked if the arm/hand numbness could be Sjogren's.  She quickly said "No, it's probably carpel tunnel."   Immediately.  Sorry, but in my book that's called Ego.  Unless I progress to the point of a Pile of Jello, am not spending any more time with these "professionals".    And no, it was not carpel tunnel, it was "nothing" according to the doc.

[anabanana]

Hi Mary, I've had nothing but bad experiences with neuromuscular specialists. I just did not like any of them.  To make matters worse, I have what neurology books deem peripheral symptoms, muscle twitching being one of them.  I felt like since the emg/Ncv didn't show anything according to them, that it must be in my head.  They sure are real quick and happy to point a mentally stable person (other than the no diagnosis torture/stress) to a psychiatrist and push psych meds.  I always say no thanks, it's in my body, not my head.  I really have a lot of hate built up for them, because they could use their knowledge to save someone, but choose to be lazy, black and white in my opinion. If I go there dragging a leg, then it will be too late by that point...
One of the Neuros kept trying to find excuses for every symptom that I listed, I just wanted to scream and deck them. But what use would that be said my other half, when we need them in order to convince them to do more testing. I have a lot of anger at these doctors  and they are responsible for contributing to my stress, when they could relieve it if they tried harder.It's disgusting, some of them are so rude, tactless, apathetic...

The last one didn't want to do a spinal tap and we pushed. Got abnormal results. No dr these days will go out of their way to help us, and we just need to push when it feels right in our gut...I pray I find a neurologist that will care enough not to give up and use their brain...

I will be pushing for muscle biopsy and small fiber skin biopsy...all wish me luck...