On my own , doctors give up!
 

Briefly, I have small fiber neuropathy and just this week had autonomic testing that was normal. This was done by a PN neurologist trained at Mayo.This is my 3rd neuro.
For the last ten days I have been so extremely fatigued that I don't feel safe driving and have been unable to work(self employed). I have had episodes of this exhaustion before my first symptoms of Pn a year ago. However it was usually one day of exhaustion but I'm now on my 10th day of not functioning. On bad days I don't have the energy to use the computer so I guess I'm slightly better now that I can sit in a chair but that's it.
The neurologist said the fatigue I am experiencing is NOT a symptom of small fiber neuropathy and all my blood work for auto-immune disorders have come back negative.
My internist (15years) now says there is nothing she can do for me. so I'm on my own with this, I don't know where to turn. Of course I'm angry at her but she also has tested for everything which has turned up normal. Great but why is it tough to leave the bed and do anything. I explain this is not depression, I like my life even with the pain. I never miss work.
So I'm offered a prescription for Ritilin. I guess to give me a lift so I can function. This scares me, taking drugs to mask my exhaustion. My body is saying I can't function. what will it do to me to over ride my body with this stimulant.
Scared and on my own.
What type of doctor should I try next?

Has your iron and ferritin levels been tested? Any possibility you are anemic?
are your periods heavy?

Low iron can also be a precursor to neuropathy

You could try homeopath or naturolpath doctors. Many of these are MDs who practice nontradional medine, usually using natural products and techniques rather than pharmaceuticals.

Actually my ferritin is low normal and I am on iron supplements. Low ferritin doesn't give you any symptoms not untill you're anemic. I'm not anemic. But you are right, many of the symptoms I have fit anemia and its been tested many times so that's not it. Thanks

a few questions
 

Is your mouth sorta dry. Are your eyes bothering you with dryness symptoms? Are you having to change the prescription in your glasses often? Fatigue is a classic marker for Sjogren's Syndrome. And has he done the specific tests for sjogrens? (SSA & SSB)

Billye

Hey Savannah,

I only mention it because my ferritin was low normal and I was not anemic, not even close to anemic. They put me on iron supplements and it barely improved, partially I think to absorption issues that I have and the insulin resistance.

I now take precription iron supplements once a day (its called repliva) because the over the counter did nothing to improve it. And within three months my symptoms have improved greatly both the fatigue, the neuropathy symptoms and the shortness of breath, rapid heartbeat etc.

Then I tried for two months without cuz I thought that I had enough iron stores and within two months I was back to where I was.

Maybe its worth asking the doc for the prescription iron.

I hope you get some answers soon. :hug::hug:

Yes I've had the test for sjogren and I don't have eye problems . Its a real mystery and thats why I'm left on my own. I can't find a physician interested enough to look beyond lab work. All labs and my extensive workup was normal except skin biospy. Strangely the more severe my fatigue and exhaustion the less trouble I have with pain or any PN symptoms. Maybe its because when I feel this bad I can't do anything. It does seem that the more active I am the worse my PN hurts.
The only other thing is my skin looks 20 years older than I am. Its dry, wrinkled (arms and legs) and that actually was my first PN symptom, very dry skin an my legs.

I can relate I was on the hunt for a good internist and saw 4 this year in hopes. What other specialties have you seen? I am assuming a neuro but others? Since my internist hunt was bad I went to many specialties with not a lot of answers still but extra tests and ruling out. Have you been to an endocronolgist or a reumo? Please hang in there and just because one doc gives up you can't. I have been brushed off by so many docs and have been told they don't know what to do but after I take a little break. Usually this is after I go on my rant I calm down and move onto the next.Right now I am trying to be on a doc break but I try to remind myself it just takes 1 good doc to help.

Savannah -

Daniella is correct, it takes just one good doc. Please hang in there and keep hunting. Is there a family member or friend would could take up your "fight" and help?

I think I may have finally found an good endo doc. He said that finding the cause for enuropathy was like tire tracks on the beach. When I asked what he meant by that, he said "finding the truck that made them." He said we'd start with the normal tests and go from there. So, maybe this doc is different from the rest.

Pain
 

Will wear you out,PN pain can wipe you out,please be careful driving.Can
you feel the pedels,have you had a bad spamsa in you foot driving. Just
wondering,I know you must make a living.I had to stop driving many years
ago,did I hate it yesbut I worried about others..This must and will be your
decision. Could I ask when was the last time you had a NCS? Am very glad your not stuck with Sj. like Billye and I. But there so many types of PN and
and so many other things that may screw you up ,such as a adrilian gland
Well now that I messed up your day i'll quit..You got some good advice just
make sure you try to find a Dr. Neuro who knows what PN is not just a headacke..Sue

Savannah---I have celiac disease, you have symptoms of this disease too, be it celiac disease or gluten intolerance. Fatique can be the #1 symptom for some of us, as is low iron. My sister's iron level was so low, she had to have iron transfusions every Wednesday for a time. Once they diagnosed celiac disease and she went gluten free, she has not had to have the transfusions. Celiac is the #1 autoimmune disease in the world, and the most undiagnosed. Neuropathy is another symptom.

They can do a blood work up for this disease now, as a starter. There are others here who have found going gluten free really helps them.

I have a ? about celiec. I have had severe constipation but bad stomach issues for many years. No diareah. Anyhow stomach aches like you want to stay in bed. I was tested a few times by blood work for gluten issues but it came back negative. I also read it takes awhile to get dx. Now the stomach issues were for years and then I developed rsd, pn,the eye issue,skin issue. I am trying to look out of the box I guess cause the reason behind my issues is unknown just that it happens to people.
I agree about when you want to give up with docs to have a family or friend pusher. I get annoyed with them but usually I come around. I said I would stop seeing docs about 10 docs ago. Sometimes I just need a break cause it is very draining. I don't know if that is harmful or not. Also maybe do a search on here of your area. For me patient refferals are the best. Not from another doc or random.

Celiac Disease
 

I also have many questions about celics disease...can you have it but have be sympton free? And do my symptoms should like Celiacs?

A year and a half ago I was treated for H-Pylori, however, when I went to see the doc about my issues, they were not the "regular" symptoms of an ulcer. The doc just checked me for H-Pylori because he had no idea what to check for...my symptoms were this - over a period of about 9 months I have noticed that when I have a b.m. I would get sick to my stomach. This continued on and off until (on 4 ocassions) I actually threw up while on the toilet having a b.m. Sorry to be so graphic...while taking the meds for H-Pylori and then for many months after I did not have this problem. However, I see it is now creeping back and always after I have a meal.

Any opinions?

Good grief, Leslie, you should see a gastroenterologist! What you describe could be the signs of a partial blockage or narrowing in the intestine, causing you to vomit when your gut can't move. No matter what the cause, you need to see a specialist. However, be forewarned, gastroenterologists and neurologists are close cousins when it comes to frustrating patients. (I had severe ulcerative colitis, had my entire colon and rectum removed, an internal reservoir known as a j-pouch constructed so I do not have to wear an ostomy bag. The medications they used either caused or accelerated my neuropathy.)

I hate to say that gastrointestinal issues are the fastest growing disease processes diagnosed today. Whether it is from reduced immune system function from all the toxins in our environment, or all the antibiotics and other drugs we have ingested throughout our lives. . . . human beings seems unable to withstand the changing environment and diet they are now experiencing.

It isn't glamorous or fun, but if you have not had a colonoscopy, it might be time. That is often the first step in diagnosing digestive disorders that can cause cramping and vomiting. But while you are doing that complete blood work-up should be undertaken too, to be sure you don't have another issue contributing to your distress.

Lefthanded -- sorry I left that out. That was my first concern...I did have a colonscopy a few weeks after the H-Pylori was found so I do know that I don't have any blockage. Only a diverticuli or two but other wise he said my colon was in good shape..

H-Pylori has been shown to cause an autoimmune type of neuropathy. Or a molecular mimicry type neuropathy. When I first got PN, the blood tests showed that I was borderline anemic (iron), and I was also having gut problems and it turned out to be helicobacter infection as well. These were my very first diagnostic tests for my PN.

Over the last 3 yaers I have read the posts of many PN'ers who describe this overwhelming fatigue with their PN. I was also one of them too. I had an autoimmune type PN. I also had autonomic instability or liability. Not necessarily autonomic neurpoathy as my autonomic testing was normal too. But I knew that something wasn't right and I had fatigue yet I was also anxious. These can very well be signs of an unstable autonomic system.

Luckily in time the fatigue went away.

The test for celiac is a upper endoscopy biopsy. I had it done this spring and it was negative although I really don't tolerate wheat and for years have keep my diet fairly gluten free.Also a low fat diet.
The reason my doctor quit is I have been tested up the WhaZoo. Actually thats a term docs use and its usually accompanied by the eye roll and a look at the nurse. Sick of it.
I'd love to give up on docs but then reality hits me and in the last few weeks I've become so exhausted I am not safe driving much less working.Remember I have NO sick leave as i work for myself!
I'm also very very pale. I look sick, strangers ask me how I'm doing. I look like I have a bad flu. I don't have MS but thats how this feels.
I understand Docs not knowing what to do but they should give me some direction as to where to go, what sort of doc to see next.
Thanks

Aussie 99
How did they decide you had auto immune PN?

I had H-pylori about 8 years ago. Now I have some sort of sensory motor polyneuopathy.

Aussie...I feel the same sort of way..very fatigued but anixous as well. I'm hoping my neuro will order more testing when I see him on Thursday.

Kelly

I apologise it took me so long to reply.

My diagnosis was really a process of elimination. Meaning I was tested for alot of things, including autonomic testing and also NCS's but everything came back normal. My ESR was always high. Through a careful history and also the progression of the illness it pointed to a monophasic generalised sensory motor neuropathy as a result of molecular mimicry. I don't have empirical evidence... but it fits. My neurologist is a small fibre/autonomic specialist.

I also aquired other vague illnesses that came and went after my onset of PN that are also considered autoimmune such as CFS,fibromyalgia,hypersensitivity, and also chemical sensetivity. I have my good days and I have my bad days. It takes 3-4 years for the human body to replace all the cells and blood. (I read this). So I reckon, another couple years I'll have been replaced twice. I should feel pretty good by then.

I feel this way too. My doc said too I have been tested as you say up the wazoo(I like that). He was like only thing left to do is take apart your body. The famous words this is chronic. I am like I am 30 and I have 80 year old issues is this normal. A blank face I get. Sorry my rant.
Savannah I heard and have a lot of similar issues and not so much concrete anyhow I hear it can take years and years to get a dx. You may have said but have you sent your records to major places like Mayo?As for fatigue I feel this way too but am not sure if it is from being in so much pain or if it is something seperate. That is the frustrating issue when something happens I don't know if it is a connection between issues or something seperate. Most docs just look at there specialty and don't look outside the box. They go to school for so many years to learn about the whole body too but don't or even give a direction sometime.Random have you tried doing a gluten free diet to see if you feel better? Even though I was tested and don't have at one point I was thinking of trying it. I may still cause I have had major stomach issues this past few weeks as well as everything else. Feel better

Just saw my internist who out of blue of the blue has decided its chronic fatique and PN. I was stunned because I don't fit the syndrome and its means there's nothing to do. Its way to early to give that hopeless diagnosis just because I had this fatique. so now i need a new internist. I didn't even get to tell her my symptoms she had a speech prepared. so I take that as fed up with my troubles and I'll need someone a little more interested. Sometimes I think a young doctor is better, fresh ideas and still excited about medicine!

Meds play a part in the disease itself
 

Leslie, I would like to ask, before commenting, what meds have you been on in the past and what meds are you on now?

The meds I am taking now are:

levoxyl -150 mcg a day for an underactive thyroid, diagnosed 20 yrs ago
amitriptylene - 25 mg a day
tramadal - 50 mg every 8 hrs as needed for pain
lyrica - 75 mg twice a day
gabapentin - 900 mg 4 times a day

I am on the gabapentin and lyrica as I am transitioning from gaba. to lyrica.

I was diagnosed with H-Pylori back in Jan 2008, and was started on the medication Helidac. However, I still think I have H-P as the initial symptoms I complained of back then are back. I have an appt on 9/22 with my doc and I plan to ask him to do another blood test to see.

From late 2006 to June 2008, I was on Celebrex 200 mg a day for athritis in my left knee. At an ortho doc appt in June 2008, he advised that I do not have arthritis but had fluid on my knee. At that point I stopped with the Celebrex.

Other than taking eleve for random headaches I haven't been on any meds long term.

I know this is more that you asked for by my thinking is swiss cheese lately and it helps to line it all out!

sorry for taking so long to get back to you Leslie, for a while I had lots of trouble typing in my user name and getting all the threads I posted in to show up, so I lost track of this one...but it seems to work now.

Meds like amitryptiline, lyrica and gabapentin can affect the sphincters and how they work in the body. Anticonvulsants and antidepressants and for some the benzodiazepines can affect the spasms occurring in the body's sphincters, and muscles (relaxing/calming/quenching burning and spasms/cramps).

So, when the levels of these drugs increase or decrease ( either through adding another medication that can interact with these) then you can get less or more spasms/cramps/burning.
so if your oesophageal sphincter started to spasm and oesophagus spasms and bowel spasms it would explain you throwing up.
The helicobacter drugs could've interacted to cover you better or/and seeing you're switching to Lyrica... you could be not on the equivalent dose of neurontin you were on yet and your body is withdrawing from the neurontin.

People with neuropathic pain who have been on these meds for long periods become centrally sensitized if they weren't already to begin with due to their injury and it can spread to other parts of their body. Internally, the gut contains nerve receptors that don't respond the same way ...everything slows down (slows down cramping/spasms/) and GI tract slows.

I don't know how the thyroid meds would affect this process...perhaps lookin up their side effects will give you an idea.

I'd Keep away from all stimulants coffee, sugar etc and try to keep your body on the alkaline side as much as possible....no laxatives either...this can start off the vomiting during the bm. THere is also a connection between the enteric nervous system (ENS) and the central nervous system (CNS), I understand it occurs through the vagal nerve. THis can explain vasovagal syncope (complete blackouts) or to a lesser extent, dizziness and starting to throw up, whilst having a bowel motion.
This is very scary, I know. Hope some of this helps. Take care.