Scared to talk to doctor, miserable, what is wrong with me?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Scared to talk to doctor, miserable, what is wrong with me?

Postby ArtAttack » Wed Sep 18, 2013 12:52 am

Hi,

I have an appointment (if you can call it that, first come first serve clinic) tomorrow to see a doctor. I have a number of symptoms, and found out about ms through google (where else?) as well as your board. I need friendly suggestions and non-professional opinions about what is going on. I welcome any and all suggestions.

I was diagnosed with:
1.migraine headaches around 2005 and raynauds sydrome
2.seizure disorder in 2010. (absence seizure with speech disturbance and facial weakness. It looks a heck of a lot like bell's palsy, my gp said, but neurologist said my gp was full of it, and wrong.
3.arthritis in 2011

My main complaint tonight, and for the last several weeks, is that I am in excruciating pain. If I sit still for a while and then get up, I am locked. It takes a while to unlock and get bpast the horrible pain, then I am okay until I move around TOO much, then I am in terrible pain again, and lay down, hoping for sleep, and when it comes I am back to square one when I wake up.

No longer is it just the joints hurting, but the muscles are twitchy after moving, my grip sucks, I have a right hand tremor and right foot keeps dragging, and I can't walk like I used to without paying attention to wher I am going, because I am going to walk over to the right unless I am concentrating. I have fallen in the tub twice this month.

My family complains that I do not make sense when I talk, but I think I make perfect sense. It is very frustrating, because I will have a well ordered thought, and try to communicate it via speech, and it sometimes comes out either as soft mumbling or disconnected. I noticed this does not happen when I write. I am not as good at writing as I used to be because of concentration and forgetting what I was going to say, but it's still a lot better than when I talk.

I find when I go to the doctor they treat everything separate, and it's getting to the point to where I have all of these illnesses that I am told are unrelated, but I have so many that I cannot handle it, and am afraid to tell the doctor more than I just told all of you, for fear of getting shoved off.

So if I would tell the doctor everything that is weird or off, my list would look like this:

1.I hurt with low grade pain (2-4 on the pain scale, which I do not understand) constantly in my fingers, toes, c-spin, and hips.
2. The only place (musculoskelotal system) I do NOT have pain is my ankles, mid and lower back, elbows and upper arms, wrists
3. The low volume pain is pretty much symmetrical
4.the high volume pain is in my right hip, right shoulder, both knees, and big toe joint (sounds stupid, but excruciating when walking, feels like I broke my foot whenever it happens)
5. I have dead nerve places on my big toes. no sensation on the skin whatsoever
6. My right foot inexplicably drags after I walk for any amount of time. I look drunk when I walk.
7.Insomnia
8. Vertigo (like the room shifted really quick)
9. Itchy skin, everywhere.
10. incontinence (this is new in the last couple of months) I think I am finished, but have significant leakage after standing up. Or if I wait too long to go, I am done for.
11. Vision went from 20/20 in 2009, to needing bifocals in 2010.
12. Slightly depressed, but more frustrated than anything. I have tons of work projects to do, and begin mid semester in October. I hurt when sitting for any length of time, too exhausted to stand for long periods. I get painfully stiff when I do anything for longer than 10 minutes or so .
13. I am losing my grip and fine motor skills. Jars, holding a brush or pen are hard.
14.shooting pains in my eyes in the back. like the pain is in the eyeball, coming from the back and shooting forward, like a quick stab.
15. sudden hearing loss that comes and goes. I have a high -pitched ring, then the hearing disappears as neatly as if a volume knob were turned slowly to zero, then the reverse happens and all is well.
16.I can no longer turn my head fully to the right, but have to turn my upper body as a unit to see over my shoulder or behind me.
17. needle stabs in my legs, feet shoulders and hands.
18. I am typing wrong on the keyboard a lot, so forgive the lack of proper caps and all. I am having to go back and correct so much these days that it is a lot of work, and I need to write this now, or I might never do it.

Okay, enough of that. I am afraid that if I go and tell the doctor all of this, that he/she will either dismiss me, write me off as crazy, or even worse, give me medicine or do tests that I do not need.

I don't know if I have ms or not. I know that life is becoming miserable because of this. The absence seizures and the headaches do not bother me anywhere as much as losing control of my body and having miserable pain.

I am a bit worried about being honest on a forum, but I am taking a chance that you all can see a pattern, or else be able to suggest something else.

Thank you for reading this, and have a good day!
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Re: Scared to talk to doctor, miserable, what is wrong with

Postby ArtAttack » Wed Sep 18, 2013 8:08 am

I will be leaving in three hours to go to the clinic. Please, I am hoping maybe somebody can give me advice on how to (or not to?) communicate all the stuff above to my doctor.

I just read that they hate it when people give them lists of symptoms, suggest illnesses, or tests, this makes me feel that maybe it's a waste of time to even go.
I quit seeing the doctor back in November of 2011 (in another state) after my GP revealed himself to be not on top of it. He was trying to sell me $35 ear grips of some sort to help my smoking stop, constantly disagreed with my neurologist, and wanted me to take black cohosh for low estrogen (he was not an ND, was supposedly a family practitioner. I looked him up on health grades and he had his license suspended in three states (I am wondering how is that possible, btw? I thought there was a central body that governed that, and how did he get reinstated in one of the states that formerly suspended him?).

To continue: I quit depakote ( pure poison, the worst thing I ever put in my body), topiramate, and vicodin in order to pursue healthy options. Became vegetarian, quit smoking, and became active. It didn't help, I am no longer able to work and worse than when I started. so now I am so nervous this morning because I have to explain why I am off of seizure meds and all. ANyway, thanks for reading this, just hoping to get some sane direction or advice. Take care!
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Re: Scared to talk to doctor, miserable, what is wrong with

Postby lyndacarol » Wed Sep 18, 2013 9:36 am

Welcome to ThisIs MS, ArtAttack.

First, you may not have MS at all, but there is a possibility; it is an exclusionary diagnosis - made by ruling out other possibilities, as you may know. Before expensive tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. I had "normal" test results initially (lesions were seen on my FOURTH MRI and the diagnosis was made then). IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS - my personal suspicion is that excess insulin (and resulting insulin resistance) is responsible for many MS (or "neurological") symptoms.

You need to find a good GP or internist, who sees the WHOLE body, who is compassionate and enjoys being a "disease detective." I am not sure that a neurologist is necessary at the very beginning. The doctor you stopped seeing back in November of 2011 was DEFINITELY the wrong one for you (or probably for anyone! I have no idea how he can be allowed to continue to practice!). I tend to believe that if you see a surgeon about a problem, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize."

A GP can order the tests necessary to rule out some non-MS possibilities. After finding a good medical partner, start at the beginning with your symptoms list (I think the right doctor will be glad to see the list you compiled your first posting. By the way, Raynaud's Syndrome and rheumatoid arthritis are auto immune diseases--it is not uncommon for a person diagnosed with one to have a second or third auto immune disease diagnosis. MS is currently categorized as an auto immune disease.) and with a thorough physical baseline examination including blood tests for your (#1) cortisol level, which can cause blood sugar to rise; (#2)glucose AND (#3) insulin levels (these are two DIFFERENT tests - I think the "fasting blood insulin test" is the most important and one of the least expensive blood tests; your level may be above the optimal 3 UU/ML; (#4) thyroid hormone levels (TSH, Free T4, Free T3, Total T3, Reserve T3, and antithyroid antibodies). The (#5) CRP (C-reactive protein) test (testing for inflammation) and (#6) liver tests are also a good idea. Ask for a copy of all your test results and keep your own medical file.

My personal belief is that Intestinal Permeability allows too much insulin to leak from the intestines into the bloodstream; and then, the excess insulin damages the blood vessels, thickens and stiffens the smooth muscles (which surround the urinary bladder and contribute to incontinence), and even affect the skeletal muscles, which may account for MANY of your symptoms.

The best thing you have done so far is to quit smoking; next, you are wise to stay active. Now, keep looking, keep interviewing, keep asking friends and family for the names of doctors they see and find the one you can work with.

These are my suggestions… Your other new friends here at ThisIsMS will have more, I know. We are glad you found us. We invite your questions and contributions to this community. All the best to you – let us know how it goes.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Scared to talk to doctor, miserable, what is wrong with

Postby Anonymoose » Wed Sep 18, 2013 9:50 am

Hi Artattack,
I would print out the list of symptoms you provided above and hand it to the doctor. They may hate getting a list of symptoms, but they need to know this stuff to help us! Reading a list of symptoms is easier and faster than listening to someone orally explain them...they can also visually make connections much more quickly with a written list.

Have you ever pursued chiropractic care (specifically upper cervical or atlas orthogonal)? I think some of your symptoms might be helped via that avenue. When I was doing AO the chiro was very focused on flexibility of neck and I gained much greater range of neck motion in a couple of months.

Good luck with your appointment and let us know how it goes!
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Re: Scared to talk to doctor, miserable, what is wrong with

Postby ArtAttack » Wed Sep 18, 2013 10:53 am

Thanks to both of you. I just edited my list and printed it out neatly, if I chicken out in handing it to him/her, I can at least use it as a reminder of what to say. I am hoping that this works! Keep your fingers crossed for me!
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Re: Scared to talk to doctor, miserable, what is wrong with

Postby bartman » Wed Sep 18, 2013 2:12 pm

I would say you have Bartonella. This is an infection often co-infected with Lyme and Babesia. Google and read Dr. Burrascanos's Guidelines and get educated on Lyme disease (ILADS vs IDSA) and the controversy surrounding every aspect of it....then remember the CDC just admitted (after years and years of saying this was a rare infection) that it is 10 times greater then previously thought at 300,000 cases per year. These infections mimic MS, find a lyme literate doctor immediately and you can get better. The stabbing pain behind the eyes symptom is very common in bartonella. It is hard to treat but many people get better.
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Re: Scared to talk to doctor, miserable, what is wrong with

Postby ArtAttack » Wed Sep 18, 2013 7:29 pm

Thank you all! The doctor was a bit of an @$$ to deal with, and to be fair, he is very limited in time, resources (clinic for indigent people) so he cannot do any great heroic troubleshooting. He treated each thing seperate, and thought the arthritis or body pain was the least of his concerns. He disagrees with both my Neurologist and GP in the other state, so he scheduled his own eeg. (HE is not a neurologist, but a pediatrician by trade (I know, it's a volunteer clinic, so go figure!) so I am not sure how he will interpret that.
He prescribed:

800 mg Ibuprofn 3x daily ( a bit high, my stomach is going to play hell with that dose)
25 mg amitryptiline for the migraines
100 mg tegretol for seizures, starting with 100 2x daily, then increasing to 400 after a week.

He ordered an eeg, and the following bloodwork:

comp metabolic
cbc with auto diff
sed rate (auto) westergreen
tsh
urinalysis screen dipstick w/reflexes to microscopic and culture.

I know what an eeg is for, and a cbc, but don't know what he is looking for in the rest. I return to the clinic next Wednesday.

At least tests are being run, so that is good...

Thank you for your help, suggestions, and advice. My pipe dream was that I would have walked in and he would have been super-nice, and told me some condition that tied all these freaky symptoms together in one neat package, and then treated it with some really cheap medication with no side effects, that made me feel better after the first pill. Reality is, that I am going to only see this guy maybe once more (which is good, his bedside manner is gruff and he is as impatient as they get) and then will be shifter to one of their sister clinics in a few weeks. Wish me luck! Thank again.
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Re: Scared to talk to doctor, miserable, what is wrong with

Postby lyndacarol » Thu Sep 19, 2013 11:36 am

ArtAttack wrote:Thank you all! The doctor was a bit of an @$$ to deal with, and to be fair, he is very limited in time, resources (clinic for indigent people) so he cannot do any great heroic troubleshooting. He treated each thing seperate, and thought the arthritis or body pain was the least of his concerns. He disagrees with both my Neurologist and GP in the other state, so he scheduled his own eeg. (HE is not a neurologist, but a pediatrician by trade (I know, it's a volunteer clinic, so go figure!) so I am not sure how he will interpret that.
He prescribed:

800 mg Ibuprofn 3x daily ( a bit high, my stomach is going to play hell with that dose)
25 mg amitryptiline for the migraines
100 mg tegretol for seizures, starting with 100 2x daily, then increasing to 400 after a week.

He ordered an eeg, and the following bloodwork:

comp metabolic
cbc with auto diff
sed rate (auto) westergreen
tsh
urinalysis screen dipstick w/reflexes to microscopic and culture.

I know what an eeg is for, and a cbc, but don't know what he is looking for in the rest. I return to the clinic next Wednesday.

At least tests are being run, so that is good...

Thank you for your help, suggestions, and advice. My pipe dream was that I would have walked in and he would have been super-nice, and told me some condition that tied all these freaky symptoms together in one neat package, and then treated it with some really cheap medication with no side effects, that made me feel better after the first pill. Reality is, that I am going to only see this guy maybe once more (which is good, his bedside manner is gruff and he is as impatient as they get) and then will be shifter to one of their sister clinics in a few weeks. Wish me luck! Thank again.

I have no medical background; I cannot tell you the purpose for all the blood tests ordered for you. I know that the sed rate is used to diagnose rheumatoid arthritis; TSH (thyroid stimulating hormone) gives part of the picture of thyroid function; a urinalysis dipstick screening gives the first indication of a possible infection, which can then be cultured to identify the bacterium.

Your pipedream is the same as we all have – a simple, easy solution! The doctor you saw sounds like a real gem! I'll bet he has wonderful rapport with children, since he is a pediatrician. Better luck with the next one.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Scared to talk to doctor, miserable, what is wrong with

Postby ArtAttack » Thu Sep 19, 2013 10:58 pm

I have no medical background; I cannot tell you the purpose for all the blood tests ordered for you. I know that the sed rate is used to diagnose rheumatoid arthritis; TSH (thyroid stimulating hormone) gives part of the picture of thyroid function; a urinalysis dipstick screening gives the first indication of a possible infection, which can then be cultured to identify the bacterium.

Your pipedream is the same as we all have – a simple, easy solution! The doctor you saw sounds like a real gem! I'll bet he has wonderful rapport with children, since he is a pediatrician. Better luck with the next one.[/quote]

Thank you Lynda... I will see what happens, blood-work & EEG is on Monday.

I am simply going to have to learn to be more assertive with doctors.
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Re: Scared to talk to doctor, miserable, what is wrong with

Postby RyanYum » Sat Sep 21, 2013 1:46 am

This is something you are just going to have to go through while they search for clear indicators that you have ms. No one want's to label ms because of the hardcore drugs and the implications of it, could you imagine if they put you on copaxone and you didn't have ms. If you have some money lying around it might be time to get a ppo with good coverage and choose an ms specialist in the area perferably at a research hospital or college. Also while you're looking for a diagnoses try some offbrand treatments such as ldn, helminthic therapy, or diet changes. Srry to hear this ms is tough, btw if this makes you feel any better I had all of those symptoms for 4 + months it took around 9 months to recover but the damage wasn't permanent.
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