What to insist my doctor do

[yesterdayschild]

I posted a really long intro in the intro forum but here is a quick thing, I have a doc that does not listen but he is state assigned due to my medical. I went from a sciatica to a neuropathy diag. I have horrible leg and joint pain and also numbness in the leg, it is like dragging a stump and sometimes it just turns to spaghetti. I did have a tick fever 2 years ago but the pain and numbness started before that. I have had a Cat scan and MRI of the back and head all clear but without contrast due to a dye allergy. I feel like I am beating my head against the wall. The doc will only address my blood clot which I suffered in Nov and that is his main concern. I can't walk or stand for more than 10 min and now I wake up with my hands almost frozen in place and I have to manually open my eyes sometimes. He will not do any tests....when he sent me to the bone and joint clinic that doc looked at the Cat scan of my back said not sciatica, it is neuropathy and walked away....I want to see a neurologist would that be the right course? I was prescribed Neurontin but I had a psych response to Regland and it scared me to death....now I am afraid to take the Neurontin...one of the side effects is suicide....any ideas? What do I ask him to do, insist on the neurologist? Of course that will be a 50 mile drive!! Any help appreciated I am at a loss...any symptoms I should look for...

[MrsAristotle]

Hi i would send the cdc ALL THE links i gave you lol, they havent updated their data base lol.

Come on you can do it De with the soda. IF you stop for a week i will send you a box with some lovely British Tea and low fat biscuits. I promise. So step away from the soda lol.

Big hugs. xxxx

[yesterdayschild]

Humm Never thought about the club soda/fruit idea, but I really should not drink any, years of abuse of soda had made my stomach and digestive tract like hamburger and I am on the blood thinners now, I fear bleeding to death but like a crack junkie it cling to my soda..lol.. I actually quit the stuff for almost a month but a dinner out got me back into the “using” stage of soda. I may have to try your idea though to get me over the hump of my addiction. I looked at the websites you suggested, it makes sense that my deer tick came from Okla. But the CDC section of the health department called me to let me know I had Ehrlichioses and also sent me an information sheet, they grilled me on travels and such and I told them I hadn’t been anywhere...I contacted the health department again to ask if they would retest me and they said they wouldn’t.. if they are investigating the travel of these illnesses you think they would be interested...but they weren’t...I have decided to just take over my diag. and do all the research I can...I am off to spit in a glass of water..lol...thanks for all your attention I really appreciate it..
Sincerely
De
(yesterdayschild)

[yesterdayschild]

Thanks for that info Niko, never heard of half of these things but you think my doctor would had. I am going to check this out because I do CRAVE the soda. I suppose I will be treating myself and have to take my car into my own hands. I have a very good friend who will have her P.A. license within the next year, she graduates in May and she keeps to telling me to hold on and she will order all the tests I need to get this figured out, the only problem is she is 3 hours away! But we could video conference most of our visits. I am off to search the YouTube video you suggested. Thanks for playing Solve my Illness with me! Lol
Sincerely
De *yesterdayschild*

[MrsAristotle]

Hi again.

Well to have Ehrlichiosis it is usually spread by the Lone Star tick.

http://www.mayoclinic.com/health/ehrlichiosis/DS00702/DSECTION=risk-factors

The Lone Star Tick is prevalent in Olklahoma.

There is a new disease in town called STARI.

http://www.ok.gov/health/Disease,_Prevention,_Preparedness/Acute_Disease_Service/Disease_Information/Tickborne_and_Mosquitoborne_Diseases/Southern_Tick_Associated_Rash_Illness_(STARI)/

This is the SOUTHERN TICK ASSOCIATED RASH ILLNESS, which is almost identical to LYMES DISEASE, but not lymes disease and is SPREAD THROUGH THE LONE STAR TICK.

So if your tick gave you Ehrlichiosis then it could have been carrying STARI too. I dont think there is any blood test for this.

http://www.aldf.com/stari.shtml

Now dont be fooled by the bulls eye rash in LD because it is not always shown, so if STARI follows LD then this could be the case for this too.

I dont understand why the Ehrlichiosis which you have  is attributed to The Minnisota deer tick by your doctor which was actually only really discovered in in Minnisota in 2011.

http://veterinarynews.dvm360.com/dvm/Parasitology+Center/New-bacterium-causing-tick-borne-ehrlichiosis-foun/ArticleStandard/Article/detail/734533

Your bite was 3 years ago.

I think you need to change your doctor. IF you had Ehrlichiosis from a Lone Star Tick in Olklahoma then it could have been carrying STARI, and that is why you have these odd things going on now.

OK. LUPUS and HUGHES is rheumatology. With your headaches and your blood clot i would certainly have had you tested for Hughes.

I had my hysterectomy at the same age as you lol 28. I had a pint or two of blood two and my symptoms started 2 years later lol.

As to the soda. IT IS ADDICTIVE. Niko is quite right and can be caused by fungal agents.

Now STEP AWAY FROM THE SODA BOTTLE LOL.

You can make your own you know which will be far more healthy for you.

Just use a bottle of Soda water/club soda. Mash up some fresh fruit and put it in a tall glass or even make yourself a jug. Then pour the club soda onto it and add a little ice if you want. And drink. Its fizzy and its HEALTHY.

IF you are addicted to these drinks you need to detox slowly because you will be needing all the sugar and then denying your body all that sugar.

So start by cutting down and adding one healthy soda drink in its place. Do this over a couple of weeks until you are only drinking the healthy soda drinks you have made.

IF YOU DRINK the diet soda by the way it is full of dangerous aspartame which can cause lots of problems in your body.

So buddy are you prepared to start with me lol. No more sugary soda drinks...oh you could by a soda stream machine and make your healthy soda like that I expect it would be cheaper anyway.

BUT NO ADDED SUGAR.

So I would now do also a bit of research on STARI, and get your doctor up to speed on tick borne diseases lol found in Olklahoma......

And get blood tests see a rheumatologist for lupus and hughes.

Phew I am all ticked out lol. (Got to get up soon its 7.07am and my chickens will want to get out into their run and have their breakfast but it has been SNOWING they were not impressed yesterday. Never seen the snow lol. I was thinking of making them little skis ha ha.xxxx

Mariax

[TheLightSeeker]

Hi again. I'm glad you re-posted.
You've had many replies covering some many possibilities.
Here's one more: The soda addiction may not be entirely yours.
There might be fungal agents creating this craving in your body.
I do suspect mycotoxins which are the natural progression of fungal
agents. in systemic yeast infections The have a mind of their own
and they can mess up the body. This could  be a co-infection with another
infection present in the body and perhaps linked to the deer tick fever/infection
Just do a YouTube search for a video demonstration of the saliva test
(self-test) for Candidiasis Infections or Candida Albicans.
It is easy to do and it will be indicative of Candida-not dx of a systemic
Mycotoxin Infection. Such infections have turned into full blown MS
cases in many people. I do not want to get into any details, till you get the
self-test done. But the suspicion for an underlying undetected infection is strong, regardless.
let me know if you need more details.
Blesings
Niko

[yesterdayschild]

Lets see First yes I have 5 birth children, the first one was when I was 18 and they did a “saddle block” the preg. Was fine but the med backed up and my heart and lungs stopped and I was paralyzed from he waist up instead of down, I had to have CPR and was code blue for 4 minutes. After that I had severe back pain at the injection site.

I do have migraine headaches and when I was 14 I went through a 6 month period of migraines but they seemed to go away but returned with a vengeance as an adult. I suffered cluster migraines at up to 5 days 4 time a month, the time without migraines was less than those with, I was prescribed inderall and eventually that was changed to Toprol XL which I take today.

I have never been tested for either Lupus or Hughes Syndrome, My doctor does not seem to care that I have pain, I had to beg to go to the bone and joint doc which spent 5 minutes, only tested my knee reflex, had me push against his hand with each leg and said you have neuropathy.

The tick fever was 3 years ago, they gave me antibiotics for ten days, and I forget which one. The type of tick fever I had was from Minnesota Deer ticks, I live in Oklahoma so the doc kept insisting that I must had traveled or someone in my family because they are not usually found in Oklahoma. I had Ehrlichiosis I really feel this has a lot to do with my present condition and I have asked my doctor to do some more testing but he won’t. I had the leg pain and numbness before the tick fever but the weakness and the severity of the pain and the memory issues, speak slurring etc came after.

I have a normal thyroid testing once a year and he says it is fine right on the line so I don’t know what he means.
I do not have Diabetes.

For Blood pressure I take Toprol XL which does double duty for the Migraines, I also take Cloninine which I can adjust if it goes high.

I need diet buddies, lol...and for the soda it is a true addiction. I have begun the journey to seek help for my diet issues, I always feel so deprived, I cannot control my pain but I can my food....I have begun counseling for all of this, the pain has taken ME away, I am no longer that strong single mom I have been for all these years, I feel like the pain has kidnapped me!!!!

I do get mouth sores from time to time...They did a CAT scan and told me it was not BP but that was 5 years ago. I feel that the tick fever may be the underlying cause of many of these issues.

The age thing and the change, I had a hysterectomy when I was 28...thank God lol Thank you for the post, no one listens and my doc is a state paid and he could care less, i am making an apt Monday and ask for a referral to a neurologist. AS for the RA/Lupus/Hughes Syn. What type of doc do I see for those?

[sarahw244]

Hello and welcome.  I really have nothing to add that the other ladies haven't already said.  I just wanted to add my welcome.
Sarah   =)

[MrsAristotle]

Oh yes gabapentin/Neurontin and suicidal thoughts. I know lots of people on this medication. I was offered it and tried it but it made me feel horrible so i stopped. I think they have to warn against suicidal thoughts with lots of medications that are taken for depression or chronic pain, because its the nature of the beast that some people on these drugs will have suicidal thoughts not because of the drug but because of their situation. When you put 2x2 = 4 the pharmaceuticals HAVE to put these warnings on now. (Sue culture etc). No medication is 100per cent safe...

There are other neuopathy medications out there. Another one is Lyrica. I am sure the girls on here who live in the states will be able to point you to others. The thing is in the UK they are called different names.

So I would investigate other medications that could help you with your pain ok.xxxx

[MrsAristotle]

Hi and welcome to our little community of no man land dwellers lol.

Well where to start with your post......

I think I will ask you several things first.

You have children. Did you ever have a miscarriage or have a problem birth?
As a child were you prone to migraines or headaches?
Have you ever been tested for Lupus or Hughes Syndrome?

As to your tick.........What weird tick fever was it do you know? It could make a difference as to why you are sick now to some extent. What medication were you on?

As to your diet. I agree with Valkyrie568 have you been tested for thyroid problems?

Also Diabetes does cause peripheal neuropathy but usually it is very vague, just tingling and some numbness.

Blood pressure. May i ask what medication you are on? The reason why I ask is I am on a beta blocker and it does slow down your metabolic rate and is harder to loose weight.

I hope you have not given up on your diet. DONT get down over it because sometimes you do gain before you loose.

IF you want a diet buddy I will go along with you through this journey, I am sure we all will. TO DIET. DONT deny yourself anything it makes it harder. All you have to do is. NO FAT OR FRIED FOOD, NO PROCESSED SNACKS or HIGH SUGAR FOOD. So no eating the twins treats lol....

Just cut down your portions and you will loose weight. NO SODA either. I had a friend who said she couldnt loose weight and then when I saw what she drank i understood why lol. She was dieting but drinking loads of soda too....lol.

Just drink water. Water will actually help your blood pressure. Take one garlic capsule EVERY DAY if you are allowed on Warferin (my mum is a long term user of this), so you have to check what you can take even supplements. IF you are allowed to take garlic capsules they work on the BP and also circulation and infections. I take one everyday and in 4 years touch wood have had no cold and my blood pressure is now normal lol.

Going back to your post.

Painful joints and legs that are hot when walking etc, can point to Lupus/Hughes/RA, that is why i have asked you about any tests.

Have you had mouth ulcers?

Bell palsy or drooping face, is associated with Lupus and other autoimmune diseases. BP does not always show up on tests.

http://www.thetole.org/bellpalsytreatmentcure.html

BACTERIAL TRIGGERS of mimics to BELLS PALSY. TICK BITE:

Lyme disease can cause facial paralysis and the same symptoms as Bells palsy. Bacteria enter the body through the skin at the site of the tick bite.

The symptoms of Bells Palsy would make your taste go funny and also you can bite your cheek when you are asleep. I know the last two as my daughter had BP last year and one of the things she complained about was the weird taste in her mouth and biting her cheek.

I would think your BP and cheek biting could be the aftermath of your tick bite which really needs investigating.

So for me. I would want to find out what weird tick fever I had. There are so many and some need different medications and treatments. IF your tick bite has not been resolved it could be causing you problems now. LYMES is classic of the symptoms you are experiencing for example.

JOINT PAIN and fatigue. I would ask your doctor to do blood screens on the obvious first. Rhuematoid Arthritis, LUPUS, and HUGHES SYNDROME.

(Hughes syndrome can start way back and only start to cause you problems as you get older). One of them is BLOOD CLOTS.

I would check for diabetes. YOu can do this yourself by using an over the counter ***** test....to see how high your sugar is....

Now stress. You have had a rough time of it too and still do. Taking on twins and coping with a disabled son.

PLEASE DO NOT SHOOT ME, but you could have Fibromyalgia or even M.E. which can be triggered by stress and outside factors. I am not saying that is what you have, but sometimes the stress in our lives has a devastating effect on our wellbeing.

Now another delicate subject. You are 51....could you also be going through the change? This would give you some symptoms of fatigue and also would be one reason why you did not loose weight.......and also could be a reason why you had a panic attack. That can come with the territory sadly lol.

I have prattled on. But you are not going mad. I would never have diagnosed you with Sciatica with your symptoms. I had sciatica and it is nothing like peripheal neuropathy because I have PN.

So blood tests for which tick fever.
Blood tests for RA/LUPUS/HUGHES SYNDROME

Thats a start anyway lol.

Big hugs.

[Valkyrie568]

I wondered about your thyroid function when you mentioned gaining weight while dieting. And I noticed in the article it said that 50% of people with diabetes develop neuropathy. I was wondering if you have diabetes?

I have developed a weight problem in the last few years and DON'T have diabetes, but we sure are at elevated risk for it! Adding in the fact I have the added risk factor of Native American blood (just 1/8). Your Oklahoma address made me wonder if we have that in common also. I KNOW I have to get my weight back down where it belongs!

[Valkyrie568]

I am a newcomer here myself and admittedly no expert, but I copy and pasted this info about diagnosing Neuropathy:

Peripheral neuropathy is often not easy to diagnose. It is not a single disease, but a symptom with often several potential causes. The standard diagnostic process begins with a full medical history with physical and neurological exams that will examine tendon reflexes, muscle strength and tone, the ability to feel sensations, and posture and coordination. Blood tests are also common in order for doctors to measure levels of vitamin B-12. Other common tests include urinalysis, thyroid function tests, and a nerve conduction study that includes electromyography (to measure electrical discharges produced in muscles). Physicians may also recommend a nerve biopsy, where a small portion of nerve is removed and examined under a microscope.

Here is a link to the full article: http://www.medicalnewstoday.com/articles/147963.php

It sounds like it would be impossible to really know if you have Neuropathy without a neurological exam. I empathize with your reluctance to have to make at least one appointment and probably more with a doctor so far away, but I would probably be worth it to have a more thorough exam and diagnosis. My current neurologist is 160 miles away and the one I want to go to is 225 or so! Don't you just love this part of rural living!?

I hope something can be done to give you some relief. It is so good of you to take on disabled twins! What a challenge. I can't imagine the selfishness of their "egg donor" to willingly cause your children to have to deal with life long disabilities.

Valerie