NeuroTalk Support Groups - Still no real answers

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- - Still no real answers (https://www.neurotalk.org/peripheral-neuropathy/156199-real-answers.html)

Quote:

Originally Posted by JB63 (Post 800968)

to be given several diagnostic opinions and continue to get worse. I too feel if they know what it is I can be treated and get better, but this is not always the reality. No doc will tell you that you will get better for certain, CYA from lawsuits, I guess. All you want to do is get better, regardless of the cause, and it is a long and heartbreaking journey. I hope you can get some resolution soon. I know it is little consolation, but most of us here have gone though this crazy uncertainty, so rant away, we hear you.:grouphug:

I am waiting to see the neuro at the end of the month about IVIG. I do not know if insurance will pay. It is for diagnostic purposes. 2 doses and eval for improvement. I have a new component to my motor PN...pins and needles in my feet, entering the sensory zone.

Good luck with you neuro appt. Please let us know how you make out. Can you explain to me what you mean by entering the sensory zone.

Thanks so much for the support. I need people to talk to about this. I was just told today "you would never know you are in pain, you look great". I keep thinking what do people want me to do wear a blinking sign that says I am in pain 24 hours a day 7 days a week. Only people who suffer this can understand:)

Quote:

Originally Posted by hopeful (Post 801115)

Can you explain to me what you mean by entering the sensory zone.

I am developing sensory neuropathy. Up until this point, my PN was motor, I had feeling in my feet and legs, but can't walk unassisted due to weakness and drop foot. I had no numbness or foot pain. Now my toes on the left are numb and on the right I have pins and needles over the foot with stabbing pain in the bottom. This is probably going to change the diagnosis one more time, but it may increase my justification for IVIG.

My heart goes out to you. I believe you're looking in the wrong direction. Medical doctors only deal with symptoms, not cause. Educate yourself on nutrition and diet, i.e. clinics in Switzerland for autoimmune diseases, Dr. Rau has written a book on an alkaline diet they use at the clinic. I'm on a modified version of the diet and am better. Take care and keep up the search. Get off the drugs if you can, hard on the liver.

JB 63 It is terrible having to fight for the treatments we need. Why doesn't someone in government take a look at the fact that Insurance Companies have taken over health care. The doctors hands are basically tired with a lot of this. Just my little rant! I hope you get the IVIG you need. I am sorry to hear your neuropathy has gone to small fibers. Hopeful

Jellybean Thanks I'll look for that book. I'd love to get off the medication. I had to go off everything about a year and a half ago so they could start me on something different. I could not believe how much the pain had progressed. Spent a few days in bed in tears. I'll give the book a try! Thanks again Hopeful

Hopeful, Hello,
I am new here and reading your post sounds aful familiar. I am and have been going around the dx circle for a few years. When people ask me what I have I do not even know what to say to them or where to start. I also am hypothryoid and have been for six years, it has been controlled for that long also, but just had an ANA panel done that said that my hypothryoidism was due to an autioammune disease. My question to you is did they do a ANA panel on you to dx the schrojens (sorry spelled wrong)? Are they questioning any other autioammune dx such as lupus, scleroderma? Do you have weakness in your legs, thighs, arms? Are you allergic to the sun? Sorry for so many questions lol. Just interested. I am so sorry that you are going thru this dx night mare also. I also was told mine would not get better and that it would progressivly get worst hopefully slowly
Susie

Quote:

Originally Posted by bobthebuilder54 (Post 802660)

Hi Susie, I have had blood work for ANA, Lupus and Scleroderma. Everything comes back OK. My neurologist said his mother was dx'd with Sjogrens 10 years ago and just tested positive for ANA this year. Was your ANA positive? I do have weakness in my legs and arms. coming up stairs is hard. I hope they are wrong about it getting worse. Mostly, I have been told they just don't know if it will get worse (I can answer that for them, it has gotten a lot worse). I just hope for some relief. I am also sorry you have to go through this.
hopeful:hug:

Quote:

Originally Posted by hopeful (Post 800315)

Hi Everyone,
I have been away from the site for about a year. I was on a quest for answers. I still haven't really gotten any. I'll give you a little background. I started having numbness and tingling in my feet in calves three years ago. It spread upn both my legs and hands and arms to the right side of my face within a few weeks. I saw neuro who did a skin biopsy for small fiber neuropathy that came back positive. He believed it was idiopathic and began the search for a med that could help me. Tried Gaba, neurotin, tegretol and a few others.

Then I went to Dr. Schwartzmann who told me it was RSD. Told me he could make me pain free and I jumped at the chance. I had the ketamine treatments, suffered the hallucinations all the while thinking I did not fit the profile but a promise of being pain free was what I wanted to hear. I apologize if any of you like Dr. Schwartzman. I am just not a big fan.

From there I saw a doctor at Hopkins who said you do not have RSD. Do not get anymore treatments. He sent me to a neuro at Hopkins. They agreed that it was small fiber neuropathy (idiopathic). Then they started saying they thought Sjogrens. I was seen at the sjogrens clinic at hopkins. None of my blood work comes back positive. Had the lip biopsy which was negative. Eye test were positive for Sjogrens. By the way, Hopkins did a skin biopsy that was negative. He said you definitely have neuropathy I don't know why your last biopsy came back positive. Maybe our lab is better. I don't understand this. My neurologist even showed me pictures of the first one. Seems each doctor thinks everything they do is the best or right answer.

So after a few years of my quest for answers I continue to have none. I am more confused than when I started. I currently see a rheumatologist for Sjogrens who tells me I have Fibro too!

Saw an endocronologist last week. I have had hypothyroid for about 18 years. He thinks the neuropathy along with all my symptoms is caused by thyroid disease.

Meanwhile my symptoms are getting worse. I have the burning hands and feet, sharp pains, tingling, electric shocks, etc. I started with bad fasiculations (sorry if spelled wrong) about 3 weeks ago. I have started to develop joint pain. I have a lot of weakness in my legs. Feels like a ran miles just to come up the steps. It's depressing. I use to exercise 5-6 times a week. Running was my sanity. Now steps are hard.

Everyone does seem to agree on one thing, they all say auto immune. I am currently taking Cymbalta, Synthyroid, Lyrica, just started Plaquanil and Tramadol for the pain. I still work for time. Rheumo said it is his job to keep me going for as long as possible. I had an x-ray of my knees to r/o osteoarthritis a few weeks ago. I see rheumo at end of sept and will get the results for that. Seems it can be a symptom of sjogrens.

I see endo again this week to get results of blood work. I am tired of all this. Did anyone else get a lot of different diagnosis. I have been tested for everything. Hopkins took 32 tubes of blood in one sitting.

All this running around and I am pretty much right were I started hypothyroidism ( Hashimotos). Small fiber neuropathy of idiopathic origin. I think I am giving up my quest for a cause. I just want the pain to end or at least improve.

Anyone have any suggestions? Been through all this? Should I stop looking? How is one biopsy positive and the other negative? Is it true Plaquinil may not give results for 6 mths. Has it worked for anyone? Does in significantly lower the immune system. I work in health care. I dont know what to do if my immune system gets compromised.

Sorry for the long rant just feeling sorry for myself today.
Hopeful

Hi Hopeful. We sound very very familiar. I use to love the outdoors, and now I have problems leaving my house at most of the time. I know my problem was either started or exacerbated after I took the anti- TnF blocker Humira in 2008 for Ulcerative Colitis. All my tests came back normal except in the beginning my eosinophil count was high for a months. I've been happy with my last two dx's which are small fiber neuropathy and crps. The crps was given to me by dr schwarzman who wants to start ketamine in the next few months. I'm curious if the treatment helped you at all? The narcotic meds don't help as much anymore. One thing that does offer me some relief is Alpha- Lipoic Acid. Most "natural" remedies make me feel worse, but I swear by the ALA. I know the frustration you feel not know what exactly is going on, getting a bunch of different dx's (two of my mine came in 09 from Hopkins neurology and dermatology dept), I also know the feeling you get when someone say, "you look fine!" :mad: Send me an email if you want vent or share some stories. I'd love someone to talk with as well. Please take care, Anthony.