Other Symptoms Not Explained By Pots And Autonomic Neuropathy

[pickledfairy]

I have had a reoccurance of symptoms that I had when I first got sick, they haven't been a problem since August, they just seemed to go away on their own. For the past three weeks I have been dealing with insomina, severe joint pain (mostly on right side), night sweats, and flushing. I talked with my neuro today for or weekly check in and he said that these symptoms are not a result of my autonomic neuropathy or POTS (which is still not fully under control either) and cannot offer any explanation as to why they have come up again.

Does anyone else deal with these symtoms and do they wax and wane like mine have? An EP doc I saw before my dx swore that there was something autoimmune going on despite negative ANA and Lyme titers and said that autoimmune illnesses can take their time to appear fully. I also had very high plasma cortisol levels the last time these were a problem, but the testing at Mayo ruled out Cushing's.

I have made an apointment with my internal medicine doc, since my neuro doesn't think it is related to the dysautonomia. So, if anyone can shed some light on their experiences it would be helpful. I guess I just don't want to think about something else being wrong with my body the POTS and autonomic neuropathy are enough!!

[MomtoGiuliana]

Have you been evaluated for EDS?

Insomnia and flushing I believe are associated with POTS (at least I also get both.)

Katherine

[Guest malosp]

Pickledfairy,

Some of your symptoms sound like they could be lyme despite your negative tests. I too had pots symptoms and started out here on this forum thinking I had post viral POTS. I ended up having lyme instead. Lyme can cause POTS symptoms. Some of your new symptoms also sound like lyme.

I don't know for sure if you have lyme but I do want to point out that lyme tests are not accurate. There are hundreds of people on lyme forums that will tell you their lyme tests were negative.

I was negative but when I took a antibiotic (tetra) I knew without a doubt I had lyme. It it me like a truck and I was very ill for about a month....then I slowly started to improve. I am much much better and am weaning off antibiotics at this time. I have no more POTS symptoms what so ever.

I just hate to see anyone else go through what I've been through.

Please check it out....you may have to go to a LLMD....and ask for a trial of antibiotics to see what happens. You may have to ramp up slowly at first.

I feel better now at least letting you know that you MAY have lyme.

[Guest tearose]

I have neuropathy that comes and goes and it is extremely unpredictable. It is hard to explain to the specialist doctor why the bladder will malfunction for three to four months and then seem improved! Then I will have facial numbness and some blurry vision for a few weeks and it will go away!

I believe some of us have a strain of dysautonomia that is more inflamed at times than at othersl

My pcp has seen me through many years of this unfolding dysautonomia and is convinced that many symptoms are related and will speak to any specialists I have to consult with to explain my problems.

I hope your pcp can be an advocate for you too!

Doing the presumptive lyme treatment is a serious decision.

For some it works, for others it does not.

I was treated for lyme and regretfully must say I HATE the fact that now I am allergic to many antibiiotics and the symptoms did NOT go away after months of oral antibiotics and weeks of IV with a PICC line.

I think there are other causes for dysautonomias that are not yet discovered.

I was offered neurontin for the neuropathy but declined it.

For as long as I am able, due to all the negative side effects and/or long term problems drugs can cause, I am trying to do all non-pharmacutical treatments.

...I'm not sure how long I can manage, but I continue to try...

Where was your POTS dx?

Can you go back to that place and ask these questions? I have found no local neurologist knowledgeable, so my pcp calls out to Minnesota as needed.

best regards, tearose

[mcpucho]

I have neuropathy that comes and goes and it is extremely unpredictable. It is hard to explain to the specialist doctor why the bladder will malfunction for three to four months and then seem improved! Then I will have facial numbness and some blurry vision for a few weeks and it will go away!

I believe some of us have a strain of dysautonomia that is more inflamed at times than at othersl

My pcp has seen me through many years of this unfolding dysautonomia and is convinced that many symptoms are related and will speak to any specialists I have to consult with to explain my problems.

I hope your pcp can be an advocate for you too!

Doing the presumptive lyme treatment is a serious decision.

For some it works, for others it does not.

I was treated for lyme and regretfully must say I HATE the fact that now I am allergic to many antibiiotics and the symptoms did NOT go away after months of oral antibiotics and weeks of IV with a PICC line.

I think there are other causes for dysautonomias that are not yet discovered.

I was offered neurontin for the neuropathy but declined it.

For as long as I am able, due to all the negative side effects and/or long term problems drugs can cause, I am trying to do all non-pharmacutical treatments.

...I'm not sure how long I can manage, but I continue to try...

Where was your POTS dx?

Can you go back to that place and ask these questions? I have found no local neurologist knowledgeable, so my pcp calls out to Minnesota as needed.

best regards, tearose

I had many courses of antibiotics for Lyme, with some success, but in the end it was not fruitful. There is a debatable post-lyme syndrome, where your body becomes autoimmune because it thinks you still have the Lyme antibodies but you don't. I found IVIG (intravenous gamma globulin) to be fantastic for this and has gotten rid of 95% of my neuropathy (tingling/numbness). You can speak to a neuro or immunologist about this.

[pickledfairy]

Thank-you for responding everyone, it means a lot to get new "ideas" when I am suffering so and thought that the POTS and autonomic neuropathy would be my final diagnoses. I will be sure to ask my neuro as well as internal medicine doc (I see my internist Wed.) about further Lyme testing as well as any further testing for possible autoimmune related illnesses.

I am thinking I am going to push for further cortisol testing and possibly more 24 hour urine catches to see if my cortisol levels are up again...my docs in Memphis thinking I had Cushing's disease is what brought me to Mayo where I was ultimately dx'd with POTS and nueropathy...so it can't hurt to further explore this avenue too.

When I saw my neuro (an autonomic specialist) in Aug. for the first time he thought we would be on the "upswing" by my three month appointment (at the end of this month) I guess that is not going to be the case. I am trying to come to terms with the fact that this may not be as quick of a recovery as I had hoped. I miss working, I miss my patients, but I know that in my current state I would not be of any help to them....I guess I am just mourning the fact that I may be on disability longer than I had ever anticipated.

Anyway, this has gotten lengthy...thank-youso much for your support. I really don't know what I would do without this site and the love that I feel from the people here!

Sheridan

[corina]

i have the (horrible) nightsweats, and insomnia comes and goes. i've always thought it was part of dysautonomia. i was diagnosed with early menopause and thought that could be part of my problems as well. i do think that hormones have A LOT to do with dysautonomia.

my lyme testing came back negaive, so i left the lyme track because i already have enough and can't handle this tracke as well as all the others!

hope you will find answers to your questions!

corina

[Jersey Girl]

Yes Yes, and Yes... My cortisol levels were also abnormally high when I first came down with POTS, unknown at the time. I also have the neuropathy, much worse a few years back that I was so thankful I was prescribed Neurontin for. I still get the facial numbness at times and have joint and muscle issues on my left side. I never received an adequate explanation for many of my symptoms from any M.D. but wonder if it's not related to fibromyalgia, another condition without adequate explanation, or just part of the POTS I still deal with. I insisted on PCR testing (not covered by imy insurance) for Lyme just to reassure myself that it wan't related. I also agree that hormonal issues are a big part of what makes my POTS worse sometimes. Hope you get some answers. Martha

[pamyla]

Hi Pickledfairly,

One other thought - have you been tested for Babesia? Night sweats are one of the most telling symptoms for that. I bring it up because while I had many negative lyme tests over the years, no one ever thought to check me for babesia until recently. On a good note, after going through about 8 months of treatment, my night sweats have gone away

Anyways, just something else to consider. Hope you find some answers!

Pam

[MightyMouse]

I get night sweats only when I have an underlying infection, like bronchitis, sinusitis, etc.

[Donna F]

I have the night sweats, and insomnia, until reading this never thought it was related, seems that since i had a full hysterectomy in 2000, i have had them almost daily and severe anxiety attacks. I have days where i thought i would go crazy as even sleeping pills cant keep me asleep for more than a few hrs. Was curious lots talk about night sweats, but does anyone experience like cold sweats if attempting to sweep or even go to the mailbox? I feel really useless, at times, i am lucky to be able to lie down in peace, i do wonder if they have ever researched the idea of hormones as from what i understand mostly women have this

Curious

Donna

[pickledfairy]

Well, I had an eventful appointment with my internist last week. She looked over my labs from the past year (I just moved back home to Maine from Memphis in Sept. and started seeing this doc) and she thinks there are couple of roots we can take to further explore these symptoms. She said it is not normal for a 29 yesr0old woman to be having the severity of night sweats, hot flashes and joint pain I have been having.

My thyriod panels have had something high or low each time it has been done, so she is redoing th epanel to see where we are now. She suspects there is something autoimmune going on as well, especially since my autonomic neuropathy is post viral and my symptoms (other than POTS symptoms) are waxing and waning in nature. I have also had a number of CPK labs that have been abnormally low (which no on told me) and she said this can be the case in people with some connective tissues diseases. She strongly suspects that all of my symptoms are caused by a mixed connective tissue disease or lupus...but said that it may take a number of these flare episodes before we get a true positive answer. She has also decided to recheck my plasma cortisol levels and also wonders if it may be a vitamin D deficiency. It sound slike we may not have a quick answer, but she is determined to figure this out.

So, off to the lab again...fasting....and my veins are horrible even when I fluid load....ugh!

Sheridan

[Radha]

Sheridan, could you please tell me what CPK stands for, what is this blood test for? and any medicines affect the test? thanks for any info

radha

[pickledfairy]

Rahda,

Here is a link that explains the CPK blood test.

http://www.nlm.nih.gov/medlineplus/ency/article/003503.htm

Here is one to the article my doc mentioned in regards to low creatinine kinase and connective tissue diseases.

http://www.ncbi.nlm.nih.gov/entrez/query.f...p;dopt=Abstract

Hope it helps, I am still trying to understadn it all myself.

Sheridan

[calypso]

I get occasional bouts of insomnia and episodes of severe flushing (the latter often accompany a POTS attack). I don't think these are abnormal for POTS patients, but the night sweats are concerning. Glad to hear you'll have some more testing. Another possibility could be some sort of hormonal imbalance -- for instance, I would get these symptoms more during times when my period was approaching.

Amy

[Radha]

sheridan, thanks so much for the info, do you know if any meds would affect the test, thanks again for your help, and how did having this test help you, what did it diagnose?

radha

[pickledfairy]

Rhada,

I'm sorry I'm not sure if any medications can effect the results or not. I had the test the for the first time to see if I was having any break down of my muscle tissue (which would give you high result). All my doc told me at that time was there was no muscle tissue breakdown and at the time I wasn't savy about getting my lab results for myself and just moved on (it was actually pretty low). Then when I was at Mayo it was run along with a battery of other tests and I didn't realize it had been done until my internist pointed out that I have had two results that were low (the original and one at Mayo).

So, we just retested it again on Tues. I believe the test is only specifically used to watch for muscle breakdown and thus a high result ( I believe it is used as a definitive test for Muscular Dystrophy), but it has been seen to be abnormally low in people with some connective tissue diseases. So, since I haven't had a positive ANA yet and have many symptoms of a CTD, my doc wants to keep track of the creatinine kinase level to see if it can lead us to a dx of a CTD in the future.

I hope this helped.

Sheridan

[Donna F]

I have a ? for anyone who may know, I woke up in the middle of the night last night and was freezin in here but yet I was drenched with cold sweat, i have never had sweats, had some NIght time hot flashes,as I did have a complete hyst. in 2000, but does this sound familiar to anyone and which doc should i call, my gyn, always wants to up my hormones, which in general makes me feel not only worse but makes me act and feel like i am having some sorta mental breakdown. I wonder what to do, i feel like they just play with me goin well it is just hot flashes, etc. but i know i never use to even sweat when i ran so this is so miserable for me, ihavent been back to sleep.

Also, i see and hear alot about lyme on here, what is that, and i have never had a doc mention it, nor the other name someone mentioned on here, this can be so confusing esp when u have docs who dont even know what dys/pots/ etc is, so tired and miserable and just dont know the answers, maybe some of u can give me advice , and maybe i can call the new dys doc i saw last wk tomorrow??

Donna