Noreen

At least that is an honest response. Being given an answer that it is anxiety or another dx rather than listening to the patient and validating her concerns and experiences is half baked medicine at best. Especially at they are not giving her treatment options.

[quote name='Angelika_23' date='Jun 7 2010, 12:08 PM' post='140947 Angela I use a forearm crutch instead of a cane. I feel this gives more stability, the cuff at the top allows you to open your hand without losing the mobility aid. When things are really bad or if I have to walk a long way carrying something (e.g. medical facilities) I am apt to use my seated walker because you never know how you will feel as you make your way back. I fight to use the cane as much as possible as part of exercising and find it does help. I am not sure whether a regular cane would give me enough of a feeling of security . I use the Walk Easy crutches and find that they are easiest for shock recoil. noreen

Glad your skin is calming down and feeling better. sorry the singulair didn't work out as hoped and I truly empathize with the migraine issue - glad it is over. I am happy you have a doc who is listening to you at last and caring. Let us know how it goes. noreen

Nina- that is so cool! I love butterflies and your picture is just awesome. I live in Karner Blue territory but never have been able to capture them as you have. Wonderful to hear good news

Brian- My tilt table was done at Ellis Hospital in Schenectady.

Not a lot of input ,Julie, but plenty of cyber hugs. I do agree with Dr. Rowe on switching to the doxy for a time. The lower dose of minocycline doesn't seem appropriate for a new exposure. I suppose, if the patient had no other issues, I might agree with the doc substitute but in this case he should take a dose of ego lower something and take the advice of his betters - Dr. Rowe. wish I had your advocacy skills, Julie. Again, mack is lucky to have you. {{hugs}} noreen

Welcome Ben!!! Congratulations Erika! I am sure the rest of the family is giddy with joy - congrats to all!

Have you had a skin biopsy? Does your mouth burn (mine also tastes like metal sometimes too)? Do your hands and feet turn bright red? Do you have problems with cold temperatures and pernio/chilblains/purple feet? I have an appt with my neurologist next week. He sees me to treat the "small fiber neuropathy." I think I mentioned that this was a diagnosis of exclusion (meaning the tests weren't positive, but I have all the symptoms for SFN). He might suggest for me to take tricyclic antidepressants. I just want something I can take that won't make me drowsy and that isn't narcotic. I tried Lyrica and it worked for myul pain wonderfully, but I put on a lot of weight and it really flared all my symptoms when I tried to get off of it. Most people with erythromelalgia have it solely affect their feet, maybe their hands or face, never their whole body. For these folks patches often work (like lidocaine or ketamine) thankful- thks for your wonderfully complete post. I am being worked up for small fiber neuropathy by my new neuro by so many of the symptoms you mention - such as not being ablt to sleep with your feet under the covers and the horrible itching keeping you awake. I use to be on Cymbalta 60 mb bid and it probably dampened down things. Generally I use to blame way too much on Raynaud's but at my last rheumy appointment I looked down and said OMG as my feet were bright purple. I already use 3 lidocaine patches a day on my wrist and neck and that is the max dose. noreen

Blue- hope you get some relief soon. I am so glad that your new GI guy 'gets' PoTs. Let us know how you make out. I know how bad the brain fog can be and how scary and lonely when one's brain has gone AWOL. {{hugs}} noreen

{{Effie}}} I so understand - I call it the Algernon Syndrome - (as an academic I am sure you remember the short story and play "Flowers for Algernon"). It can be so hard knowing that if you stand up you may not be able to remember that idea, if you have to go to the bathroom, your brain may have to reboot when you lay back down. I feel like I lose half my IQ points within 15 minutes especially if the temp is above 72 degrees. I'm sorry I have no great idea to help but I can offer plenty of understanding. Before I found this forum, I kept wondering whether I should be tested for alzheimer's yet one sees docs and you're sitting down and they don't quite get it.

As noted you would never get a cooling vest in time but this is an idea I've been thinking of using in a pinch - they sell 'ice blankets' in grocery stores around here - basically about 12 iinches by 20 inches which you freeze and then are to lay on top of your cooler when picnicking. Freezing a couple of these and then using them with a light scarf or blanket might really help keep you from crashing.

60 to o65 year round? hmmm. How's your barometric pressure? Your locale could knock Hawaii out of the running for me. We just had topic 'Has anyone moved due to PoTS?" and your climate is what everyone is after. hope you have a good evening, noreen

Maggie- Thanks for the heads up. It does seem totally warped that they can't insert a USB storage device but there it is - Wonder if we could each get our own UPC code and they could scan us - the system is unworkable the way it is - it is harder than ever to get records from docs as they transfer over. I don't have the energy to call and call and follow up - if I do that, I cannot eat or clean up after my son. Going to get them and carrying them in the heat takes another three days out of me.

Thanks a bunch, simmy. I was a day or so later ordering so it is probably in today's mail. And remember the one liner - "Are you accusing me of medical bracelet fraud?" if anyone is daft enough to say anything.

Anyone ever wonder who wrote the Wikipedia article on POTS? Under treatment, it actually recommends a change in environment. Some patients report that symptoms worsen with changes in barometric pressure. (For instance, before a thunderstorm.) These patients may find relief by moving to a new location where barometric pressure is relatively stable, i.e. San Diego.

Rama- the enbrel was taken early in disease course and did protect my bones. At the time there were no recommendations for taking it early but I didn't see a lot of alternatives as my pred dose was reaching as high as 40 mg. Now there is more information available for you to base your decision upon. I think you will find this excerpt from the Journal of Neuroinflammation interesting. Of particular relevance to intersections between neuroinflammation and neurodegeneration is the ability of TNF to increase expression of interleukin-1 (IL-1), which in turn increases production of the precursors necessary for formation of amyloid plaques, neurofibrillary tangles, and Lewy bodies. More recent data have revealed that TNF, one of the few gliotransmitters, has strikingly acute effects on synaptic physiology. These complex influences on neural health suggest that manipulation of this cytokine might have important impacts on diseases characterized by glial activation, cytokine-mediated neuroinflammation, and synaptic dysfunction. full journal article The researchers were working with Alzheimers patients so this article is not going to be everyone's cup of tea.

I, too, have all the symptoms of CFS and have had for 20 years although the dx I was given then was fibro. Since then other dx which can cause fatigue have been added. I went on Enbrel the anti-TNF when it first came out and was on it for six years. It did wonders for my fatigue. I stopped it because of increasing migraines and a change in my visual field - symptoms which I now attribute more to the dysautonomia rearing its head as an early 'change' occurred. Your post about your doc's ability to test TNF levels was intriguing and I wondered whether the rheumatics were considered as an alternative to the antivirals. BTW, I do not endorse the overuse of these drugs and have a problem with the marketing of them for trivial ailments but your CFS is far from this category. On a cautionary note, all is not known yet about these drugs as to the effect on the thymus gland.

Hi blue- The term will be unfamiliar to some forum members so I was looking for a definition to post. The following is from MedicineNet - Erythema nodosum is a type of skin inflammation that is located in a certain portion of the fatty layer of skin. Erythema nodosum (also called EN) results in reddish, painful, tender lumps most commonly located in the front of the legs below the knees. The tender lumps, or nodules, of erythema nodosum range in size from 1 to 5 centimeters. The nodular swelling is caused by a special pattern of inflammation in the fatty layer of skin. Erythema nodosum can be self-limited and resolve on its own in three to six weeks. Upon resolution, it may leave only a temporary bruised appearance or leave a chronic indentation in the skin where the fatty layer has been injured. There are several scenarios for the outcome of erythema nodosum. Typically, these areas of nodular tenderness range in size from about a dime to a quarter and they may be tender and inflamed off and on for a period of weeks. They usually then resolve spontaneously, each one of the little areas of inflammation shrinking down and then becoming flat rather than raised and inflamed. They leave a bruised appearance. Then, they resolve spontaneously completely. So, while I was just looking for a definition, I think that answers it for you. It is not permanent (probably only feels that way).

Positive energy and prayers winging your way, Jana. I know the last thing you want is more surgery. {{hugs}} noreen

Still praying for your family. any news on the baby?

Tara- I understand where you are coming from - one approach you might try if you want to stay away from drugs is cranial sacral therapy. It won't hurt and might help. My PT is doing it on my neck as the docs fought in the hall last time I was in and are clueless how to proceed. I was able to pick up and read a newspaper in her waiting room last week - haven't been able to do that in a year without aggravating my constant migraine. As long as no one is doing without I think this is worth a shot - http://www.iahp.com/WestWindsCST/ I searched for a doctor in Seattle certified in the technique and got this woman. Her profile says she specializes in post surgical issues.

I tried it as a sleep aide a long time ago and slept around the clock and was still groggy the following day. Now I know it was the NCS.

Welcome Tara Lynn I am glad that you found this wonderful group. The knowledge and support here is in a word, incredible. Your journey is like many here and I am sorry it took so long for your diagnosis. Having a bad time after surgery is another common event seen often in forum members. The stomach problems probably shouldn't be treated with tylenol and advil - but you probably know that. Are you sure it helps or is the pain passing after you do something for it? Have you tried simethicone to eliminate a gas component to the pain? Is the pain in the area around your recent surgery - I'm thinking adhesions - or has your OB/GYN already cleared this? I know you don't advice on seeing a gastro guy and I've put off going back for over a year but there it is - it is your body and your decision. Does your PCP know you are taking the OTC for abdominal pain? I just don't want you to end up sicker and have to see docs in an ED when you have lost control over who you see for your medical care. We can all relate to your PTSDD - Post Traumatic Stress Disorder from Docs. Hope today is a good day noreen

{{Nina}} you're showing your true mettle girl - you are remaining strong and true to yourself as shown by keeping your medical priorities straight (and, of course, thinking about your kitties). I think your moniker should be the Amazing Mighty Mouse. So many would fall apart and if they had a chronic illness complicated by dysautonomia would fall further downhill if situations were reversed. I hope knowing that positive thoughts and loving energy is flowing toward you from this forum is a help. Remember to breathe, when in doubt, listen and - On another note - I understand how hard it can be to find a neuro you can work with - I've got way too stories on that specialty. It is wonderful that you know exactly what you need from them and refuse to take less than you deserve. Hope the headaches relent and the cats get all the petting they deserve (in their minds, of course) {hugs} noreen

It all sounds normal for this group. Kudos for figuring out the BP thing on your own. Hopefully your cardio will order a tilt table test to complete your diagnostic work-up. I, too, had a long period of recovery from surgery. Whether it is the hypermobility causing the dysautonomia and then any deconditioning making everything worse = it is all not fun. Welcome to the group. At least you found a place where you;ll be understood.