Multiple illnesses, multiple symptoms. Embarrassed to tell doctors

[marti]

So many of us have several physical illnesses and many, many symptoms. When I see any one of my doctors I hesitate to start listing all my problems for fear they won't believe me. I mean it's "this hurts, it hurts here, this is killing me, I'm dizzy, I'm nauseous, I'm anxious, and on and on". I end up telling each doctor everything, thinking that something will set off an alarm with at least one doctor and that one just might put it all together.

Do you tell ALL your doctors everything? Used to be a family doctor listened to everything and could treat a lot of things. Now everyone is so specialized. Some just want to hear about your gastric stuff or your headaches. They don't take the whole body into consideration. I always end up hearing "go to your Primary", who then sends me back to one or the other specialist. Then they all want to lump it into MS. So I end up getting very few answers.

I'm sorry to be so frustrated. Getting older sucks and brings other problems along with aging. I just want to find one thing that can be fixed!! Then maybe I wouldn't sound so unbelievable to at least one doctor.

I wake up every day worrying about my health. And I am NOT a hypochondriac. I do make a list for each doctor and I try to limit each list to the symptoms that fit each doctor's specialty. But so many symptoms overlap. I figure if I'm going for an appointment I should tell as much as I can and see if any light bulbs go off.

[mercadies25]

No Marti you're not alone. I could've written this myself.
I just think they're all so busy it's easier to blame it all on MS. After all no one can fix that.
Even when I would have to go to ER I would always hope to find a Dr. House.
I got so many issues that I just fed up!! I'm just 51 and I'm pretty sure this is not the way I should feel
MS JUST SUCKS!

[pennstater]

When I go, I have a list I give to the doctor(s). Maybe you can come up with something that works for you. Here is what I do.

I keep in a spreadsheet the symptoms, date symptom started, which doctor is treating, and any meds I am taking for it, med dosage, and date meds started.

I also indicate if MS, non-MS, or undetermined. I then have an indicator to show if new, or if not new, if improving, stable, or worsening or returning.

Finally, I also have a priority number assigned as to importance for me to review. Reality is that you can usually only get 3 symptoms reviewed in a visit, but sometimes, my doctors will take a quick look at worsening and undetermined even if not prioritized.

When I go to a doctor, I look at date symptom started and my notes on symptom level/dates and if after my last visit with the doctor, I update if new, returning, improving, worsening, stable.

I am not sure if it is because I have the sheet and doctors know I am keeping track or just that they have a paper they can look at and see comprehensively, but I have had pretty good luck with it.

I know it sounds confusing and requires a lot of effort, but once you get in habit, it becomes easier and my doctor visits have become more productive. I also keep more detailed notes that I take, so I can describe the prioritized issues better, answer questions, and document which doctors I reviewed it with, dates, and outcomes (any test ordered and results, referred to another doc, therapy, meds, etc..) So the documents help me since memory and cog fog are issues. I also can then show my doc the detailed history on issues undetermined cause.

Again, this is what works for me. Other people may have other ways.

[Carolinemf]

Hi Marti,
I think you would struggle to find some one with MS who hasn't
experienced the frustration you are describing! Are You a mind reader?

I have also had doc's do the opposite and forget to consider MS/dmds as a contributor to whatever is troubling me at the time because they just see me sitting in a chair when they enter the room and they haven't taken the time to read my history.

Most doc's see multiple patients daily and it is hard to give each patient the focus and consideration, feedback we would all like and sometimes need. They are only people too and trying to make a living. I changed neuro's after 10 years for his lack of working for me attitude and my new doc is so much better. Some are just better than others I guess. A couple of times I have asked my doc to think about my issues and come back in a week or so. This achieved a more satisfying dialogue.

Listing things to be discussed can be so important otherwise cog fog guarantees some thing will get missed. So try never to be embarrassed or Hypochondriac(y). I do find being on the clock
or a bit rushed by the doc or circumstances makes me feel and think worse so it helps to make a longer apt. This costs more but it gets more accomplished and i feel better. I'm not sure how apts work in the states though.
All The best.

[Ivy_Sprite]

I actually have a doctor appointment tomorrow with my primary care doctor-and she's leaving! So this will be the last time I see her. I've had her for years, so she knows about my symptoms and communicates with my neuro after each visit. I always make a list of what I'm going to talk to her about, because I will forget half the stuff if I don't. The more thorough the list, the quicker the appointment...I think. But what really stinks, is that she is leaving, and I will have to explain everything to a new doctor. Will they think I'm a hypochondriac? I hope not! But when I make the list, it worries me how long it is.

I'm going to ask my current doctor to recommend a new doctor, and *maybe* she can pass the list on for me, so I won't seems so....I don't know, eager for meds? That's what I worry about. "I'm not making this up-it does hurt there and constantly and I really do take that much medication already, but then there's this and this, oh and sleeplessness, but then I'm tired, and I forget words and stuff, " etc...
Ugh I ramble...

So to answer your question-I do tell my doctors everything. Luckily, I only have my pcp and my neurologist to deal with. Oh, and my ophthalmologist. I probably should be going to more specialists, but I try to keep my doctor visits to my local clinic and hospital, with the exception being my neuro, who is about an hour away.
I see her in about a month. But I should get my new list finished today, so I have it ready for my appt. tomorrow.

[marti]

I actually have a doctor appointment tomorrow with my primary care doctor-and she's leaving! So this will be the last time I see her. I've had her for years, so she knows about my symptoms and communicates with my neuro after each visit. I always make a list of what I'm going to talk to her about, because I will forget half the stuff if I don't. The more thorough the list, the quicker the appointment...I think. But what really stinks, is that she is leaving, and I will have to explain everything to a new doctor. Will they think I'm a hypochondriac? I hope not! But when I make the list, it worries me how long it is.

I'm going to ask my current doctor to recommend a new doctor, and *maybe* she can pass the list on for me, so I won't seems so....I don't know, eager for meds? That's what I worry about. "I'm not making this up-it does hurt there and constantly and I really do take that much medication already, but then there's this and this, oh and sleeplessness, but then I'm tired, and I forget words and stuff, " etc...
Ugh I ramble...

So to answer your question-I do tell my doctors everything. Luckily, I only have my pcp and my neurologist to deal with. Oh, and my ophthalmologist. I probably should be going to more specialists, but I try to keep my doctor visits to my local clinic and hospital, with the exception being my neuro, who is about an hour away.
I see her in about a month. But I should get my new list finished today, so I have it ready for my appt. tomorrow.

Well, this sounds like it was written for me or by me. I tried to limit my doctors to a primary and the neuro, but I acquired more and more illnesses and had to find more specialists. I make lists for each one but try to keep them short. One of my doctors always told me I was always trying to "minimalise everything". Not sure if that's a word, but I knew what she was saying. And I appreciated that she understood that. Good luck with your new doctor. I'm facing that soon.

[marti]

When I go, I have a list I give to the doctor(s). Maybe you can come up with something that works for you. Here is what I do.

I keep in a spreadsheet the symptoms, date symptom started, which doctor is treating, and any meds I am taking for it, med dosage, and date meds started.

I also indicate if MS, non-MS, or undetermined. I then have an indicator to show if new, or if not new, if improving, stable, or worsening or returning.

Finally, I also have a priority number assigned as to importance for me to review. Reality is that you can usually only get 3 symptoms reviewed in a visit, but sometimes, my doctors will take a quick look at worsening and undetermined even if not prioritized.

When I go to a doctor, I look at date symptom started and my notes on symptom level/dates and if after my last visit with the doctor, I update if new, returning, improving, worsening, stable.

I am not sure if it is because I have the sheet and doctors know I am keeping track or just that they have a paper they can look at and see comprehensively, but I have had pretty good luck with it.

I know it sounds confusing and requires a lot of effort, but once you get in habit, it becomes easier and my doctor visits have become more productive. I also keep more detailed notes that I take, so I can describe the prioritized issues better, answer questions, and document which doctors I reviewed it with, dates, and outcomes (any test ordered and results, referred to another doc, therapy, meds, etc..) So the documents help me since memory and cog fog are issues. I also can then show my doc the detailed history on issues undetermined cause.

Again, this is what works for me. Other people may have other ways.

Wow you are organized! I just make a list of symptoms and meds ( I don't take many ). Some of the symptoms just sound crazy by nature. Like the feeling that something with sharp teeth is just biting me all over. Or like I've just had a haircut and am itchy. It sure would help if our doctors would communicate with each other.

[marti]

I actually have a doctor appointment tomorrow with my primary care doctor-and she's leaving! So this will be the last time I see her. I've had her for years, so she knows about my symptoms and communicates with my neuro after each visit. I always make a list of what I'm going to talk to her about, because I will forget half the stuff if I don't. The more thorough the list, the quicker the appointment...I think. But what really stinks, is that she is leaving, and I will have to explain everything to a new doctor. Will they think I'm a hypochondriac? I hope not! But when I make the list, it worries me how long it is.

I'm going to ask my current doctor to recommend a new doctor, and *maybe* she can pass the list on for me, so I won't seems so....I don't know, eager for meds? That's what I worry about. "I'm not making this up-it does hurt there and constantly and I really do take that much medication already, but then there's this and this, oh and sleeplessness, but then I'm tired, and I forget words and stuff, " etc...
Ugh I ramble...

So to answer your question-I do tell my doctors everything. Luckily, I only have my pcp and my neurologist to deal with. Oh, and my ophthalmologist. I probably should be going to more specialists, but I try to keep my doctor visits to my local clinic and hospital, with the exception being my neuro, who is about an hour away.
I see her in about a month. But I should get my new list finished today, so I have it ready for my appt. tomorrow.

And HOLY COW... your primary communicates with your neuro!! How did you get them to do that? That would make this process so much easier ( depending on the accuracy between them ).

[pennstater]

Wow you are organized! I just make a list of symptoms and meds ( I don't take many ).

I found I had to be or I couldn't answer the questions or get my doctors to see it all comprehensively. Added bonus: it helped when I needed to file for disability as my neuro added the list for each visit to my medical recs on office visits.

As for doctors talking, I am fortunate. My neuro and primary talk when needed, but mostly, neuro sends all detailed recs to primary.

[Ivy_Sprite]

So lucky!

And HOLY COW... your primary communicates with your neuro!! How did you get them to do that? That would make this process so much easier ( depending on the accuracy between them ).

It's kind of great-they do that on their own! Even my eye doctor sends all my info on changing ON and field vision tests to my neuro. Even though I'm in a smaller college town-they just found it an automatic thing to send tests results/info on changes with me.
I am really lucky with that. But this is my 4th neuro in all of this. She's a Neurologist that specializes in MS, and I think that makes a big difference

[loopey]

I Feel The Same Way

I also make a list but my MS doctor will say "that's not neurological" see your primary. I have had so many things wrong that I do feel like a hypochondriac sometimes.

I had breast cancer so I had an oncologist and surgeon. I had kidney stones but was treated in the emergency room. I lost about 50 pounds and had so many tests I can't even remember them all and really didn't get an answer. I had an enlarged ovary (I am 68 so it was very concerning) so I had my ovaries removed. Now I have high blood pressure which medicine didn't help and spasms in my chest and my primary sent me to a cardiologist. I haven't gotten the results of the tests yet.

I have at least one UTI a month and also have started getting canker sores on the roof of my mouth.

And then there are the MS symptoms. I won't go into all of that but the MS alone would be horrible enough without all the other things that keep coming on relentlessly. So I can relate. It sucks!

[marti]

I also make a list but my MS doctor will say "that's not neurological" see your primary. I have had so many things wrong that I do feel like a hypochondriac sometimes.

I had breast cancer so I had an oncologist and surgeon. I had kidney stones but was treated in the emergency room. I lost about 50 pounds and had so many tests I can't even remember them all and really didn't get an answer. I had an enlarged ovary (I am 68 so it was very concerning) so I had my ovaries removed. Now I have high blood pressure which medicine didn't help and spasms in my chest and my primary sent me to a cardiologist. I haven't gotten the results of the tests yet.

I have at least one UTI a month and also have started getting canker sores on the roof of my mouth.

And then there are the MS symptoms. I won't go into all of that but the MS alone would be horrible enough without all the other things that keep coming on relentlessly. So I can relate. It sucks!

Loopey I understand. Sounds like we are rowing the same boat.