Exploring the possible diagnosis

Welcome New Member Introductions
1

Hi All,

I'm new here! Thanks for the kind welcomes already!

I am thankful to have found this community and have spent the last week reading through your discussions and posts and have been absorbing some already!

Fall of 2013, I developed a headache/neurologic condition (with visual changes, facial droop, confusion, short term memory loss, hearing changes, etc. etc.,) called Idiopathic Intracranial Hypertension and/or Pseudotumor Cerebri (my diagnosis was confirmed June the following year) that is characterized by too much accumulation or poor reabsorption of CSF fluid in the brain--leading to increased intracranial pressure; in my case, chronic, and we don't know why. And every time I get sent to a new doc they dispute the dx thinking it doesn't/shouldn't quite make sense. I've tried many meds to treat the head pain: amytriptyline, nortriptyline, gapapentin, and am currently on acetazolamide and topiramate to decrease CSF production.

At the same time that the IIH started I started getting these flares in my feet and hands (sometimes late at night my nose too) where they swell, get hot, and painful, tingle at times (before this, my peripheries used to always be more on the cold side, actually still are sometimes like ice). Some times both sides are equally bad, sometimes one is worse than the other, sometimes it's only my hands or feet. I'll add some pictures. It gets especially worse when my head gets worse. With some overlapping triggers: activity, working out, weather heat & humidity, too hot/warm showers, being extra fatigued, staying up too late. In July after my "official IIH diagnosis" I asked my family Dr. about the symptoms, she checked my renal function & CBCs and told me to ask my Neuro. He said he didn't know. So I brought in pictures one day and he said he thinks I likely have EM and explained it to me, but my "pictures look less severe than the pictures" he is used to seeing (i.e. I don't think he's seen it in person).

Anyway... I hadn't heard of it before that appointment. And I agree that my pictures don't look nearly as bad as the ones I see online. Though, in the past year and a half, I think it is getting worse. Does that happen to people? Even though I seem to go through phases where sometimes it's not as bad as I would have expected it to be, and I'm not sure what made the difference...I have now started to have a few rare episodes where my hands and feet will swell, feel very full, and turn blue/purple (like what I think Raynaud's is)--also new. Can this be part of EM?

Personally, I think the IIH and this hand/feet swelling is related... I wonder if somehow on a neurovascular level I've developed some sort of leaky cellular membranes? Wondering if anyone else here has the combination of the two conditions?

Thanks all in advance for reading my long post and for your thoughts and comments! Looking forward to learning from how you journey with resilience through this life with this awful condition...

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2

Welcome Taleema, one thing for sure is that you will find a lot of help here and support from the people who are in a similar position and understand what you are going through and that certainly made a big difference to me when I joined. I always found it difficult to explain what it was like, but reading what other people have said has made it easier for me and I feel I am more able to tell the doctors just that, rather than just not being able to describe it.

Personally I don't know much about IIH, but what I will say is that you asked about whether it got worse over time and I can certainly answer that one. Yes, it does get worse over time. My symptoms started around 10 years ago, but at that time it was just that my feet started to hurt in that way I couldn't describe to people. The nearest I could say was that it felt and looked as though I was sunburnt. It only used to last a couple of hours in the evening and always worse in hot weather. What I never understood was that especially in winter if I took my dog a walk late at night and it was cold by the time I got home they felt much better. I must add that I always wore sandals even in the winter. I now know why they felt better as it was the cold!

I didn't even tell my doctor because I didn't know what to say and it wasn't that bad really. However, as time has gone on it just gradually got worse and worse. I did tell me doctor quite a few years ago but he just said it was peripheral neuropathy and not much else. It's only quite recently that doctors have been actually taking notice of me and it's still under investigation. My doctor had never heard of EM until I showed him this association. There have been other complications over the last 2 or 3 years and so it's been ignored as they were considered more serious.

Now it's there all the time! The only time I get any relief at all is to sit with my feet in a bowl of water, not too cold as you get rebound. I have to have them inside freezer bags first as I have ulcers on my feet and so I can't get them wet.

I really do hope that it helps joining in here.

3

I'm not a doctor. However, EM is essentially autonomic nervous system dysfunction. The nervous system is split between the central nervous system (CNS) and the peripheral nervous system. Since the CNS is comprised of the brain and spinal cord and you are experiencing chronic inter-cranial pressure, autonomic nervous system dysfunction as a side effect seems conceivable.

4

So sorry for your problems. When reading everyone’s problems it seems to make mine small. Even though EM has ruined my life because I can’t sleep due to pain in my feet and legs. There is no rhyme or reason to any of mine. I take clonidine and gabapentin and looking for a dr to help. After more than 16 years I finally have a diagnosis.

5

Please don't feel that your problems are small, to you they are not! I was just the same in the earlier years I used to get really depressed that it was ruining my life. I just wasn't aware of what others were going through as I wasn't involved in any forums like this one.

6

Hi red toes -

I recently was prescribed Clonidine and only after a half a tablet for 4 days my feet were looking and feeling worse - I stopped taking them - Please have a look at the Side Effects of Clonidine you will find that it can cause REDNESS in the extremeties as well as Edema and can increase pain levels .... Please be aware that this drug can do these things as well as it was causing sleep disturbances in the form of dropping off to sleep even though feeling very tired and having vivid stupid dreams that seemed so real - a frightening drug for me and an unhealthy one as well.

I hope this info helps - Please be aware of ALL Medications -

Cheers -

frostbite (Greg)

COOMA NSW

red toes said:

So sorry for your problems. When reading everyone's problems it seems to make mine small. Even though EM has ruined my life because I can't sleep due to pain in my feet and legs. There is no rhyme or reason to any of mine. I take clonidine and gabapentin and looking for a dr to help. After more than 16 years I finally have a diagnosis.
7

Hi Sheltielife -

Definitely looks like EM to me - and EM can co-exist with Raynauds and intermittent and random symptoms are also a commonality - it took over 7 years for me to get diagnosed - it can be a very frustrating condition to have and a lot of times the doctors do not know the cause, let alone a cure ....

Good luck with finding something that helps - Some Foods can trigger the flare ups so be aware of this fact - I am having to live on beef only - no fruits & no vegetables, no grains, seeds or nuts - NO Anything apart from beef or I will suffer with a flare up - I still check if this is the case every few weeks and then pay for my trial with sore feet again for a few hours and a lot of pain killers ....

Cheers - And all the best -

frostbite (Greg)

COOMA NSW

8

Yay, Greg (frostbite)! You're back! I'm glad to see you're still with us. That's the best news i've had all week.

9

Frostbite, glad ur back, been thinking of you!!

10

Hi carterdk - Yeah, still alive and hoping for help - I am seeing a Skin Specialist 24th July and I hope he can offer some help - but I am not holding my breath - Cheers mate - take care - frostbite (Greg).

11

Hi Kerri - Nice to meet you and Thank You for thinking of me - I hope you are getting some relief for your symptoms - It is a very Hard Road we walk with EM - That is if we can walk ... It is a very difficult struggle as I know only too well and you are only starting to find out just how difficult it can be getting a treatment that will do some good for you - Trial & Error is about the only way to find something that may help - Go easy on any new medication - if you don't feel right or it makes things worse then Stop taking it - as some meds can do irreversable damage ...

I don't want that to put you off trying new meds but just be careful please ...

Cheers & Take Care -

frostbite (Greg)

COOMA NSW

Australia.

PS - Apollogies to Taleema _ It is not intentional that I appear to be hijacking your posting - I have been quite unwell of late and just like to give a short reply to those who have wished me well - Cheers to you Taleema - I do hope you are getting some help for your condition - as we are all in the same/similar circumstances and here for others when needed- So please keep asking for help from any quarter - Great bunch of people here and Welcome to You - Take Care - frostbite.

Kerri said:

Frostbite, glad ur back, been thinking of you!!
12

Hi Frostbite,

I am getting very confused with the food we should eat. You seem to be saying that we shouldn't eat all the things that are supposed to be good for you :-) You just eat beef! Unless you are having a joke that means I have to go on a hunger strike as I have been told I shouldn't eat red meat as I have a high red blood cell count!

13

Hi sheltielife - Please see the Message I sent to you regarding foods . .. Cheers frostbite (Greg).

14

I have been reading about clonidine causing the red feet. iI have been on clonodine 0.1 in the am and 0.2 in the pm.

use to take it the other way around but could not function. Just wanted to sleep. I have been on this drug for b/p along with atenolol for over 20 years. I was diagnosed with sarcoidosis in my lungs and now have it in my steuma nd salivery glands. Also being diabetic I have trouble with my feet and now my feet(especially) the left foot are red and burning and appear to have a rash. I just read Frostbite had said about the clonidine and wonder now if this is causing the problem. When I shower I run cold water before I putmy feet in sometimes this helps sometimes not. Last night I woke up with the nerves in my feet burning. I had to put them in freezing water. I have.not been diagnoised with EM and never brought this problem up to the half dozen pecialist I go to. I was on Lyrica for awhile but stopped because I did not feel it was helping and actual it might havebeen sorry for taking up evryone's time but frostbites comments have gotten me to thinking Linda



sheltielife said:

Hi Frostbite,

I am getting very confused with the food we should eat. You seem to be saying that we shouldn't eat all the things that are supposed to be good for you :-) You just eat beef! Unless you are having a joke that means I have to go on a hunger strike as I have been told I shouldn't eat red meat as I have a high red blood cell count!

15

Kerry, I think Greg meant: Trial and error, with your doctor's approval and guidance. Similarly, if you are weaning off a med, that should be with your doctor's approval and guidance.

16

Kerry, I agree with Madere about what Greg meant. It can be very dangerous to suddenly stop a medication if you have been on it for a while in particular. I am lucky in that my husband was a research chemist and I started my working life in a laboratory and so due to that I probably know more about drugs than the doctors do, except perhaps the newer drugs. Food is different there is no reason why you shouldn't try stopping eating certain things and see if that helps. Yes, sometimes medication can cause or make things worse but again shouldn't really be stopped without asking your doctor. I must confess that I have stopped things without asking sometimes e.g. when Gabapentin put me in a coma for 2 hours I stopped taking it! I was silly I took it at a weekend when my normal doctor wasn't working and our out of hours is a waste of time. I was also silly for not looking up drug interactions, as I wasn't in a good state I had just lost my husband. Had I looked it up I would have found out that it interacted with another drug I am on. That is a case in point my doctor didn't know about this drug interaction. When I showed him what I had found out on the internet he was shocked and apologised. I was lucky as not only could it cause a coma it could also cause death! It's very difficult as it would be nice to be able to trust our doctors to know everything but in reality that isn't feasible. For years I have been saying that especially a General Practioner shouldn't be responsible for deciding which drug to give someone as they don't have the knowledge. To me it would be far better if a doctor diagnosed what he/she thought was wrong and then left it to a pharmacist, one that knows what other drugs you are on and other health problems you have to decide the best course of action. They are the experts as far as medication is concerned not the doctors.

17

The more complex our often multiple diagnoses become the more varied our medication needs also become. With this is a greater need for careful overview of the often complex interactions between drugs. Doctors are not pharmacology specialists so a pharmacist is a vital part of our medical care team and certainly in the UK it is possible to have a medication review with your pharmacist on request.

I've also recently had a medication side-effect which shed light on a problem I hadn't recognised with another treatment. My thoughts to help myself and support my doctors in the future is, if any new medication is proposed, to request a pharmacist review before I start taking the new treatment.

18

Thanks, Sheltielife, for the welcome!

I didn't know this... it's good for me to be aware. Do you think the recurring flares end up being compounding injury? And so you could ease some of the severity in later years? I guess it has been a few years that I wake up because my feet are hot and have to pull up the covers... but never thought anything of it.

sheltielife said:

Welcome Taleema, one thing for sure is that you will find a lot of help here and support from the people who are in a similar position and understand what you are going through and that certainly made a big difference to me when I joined. I always found it difficult to explain what it was like, but reading what other people have said has made it easier for me and I feel I am more able to tell the doctors just that, rather than just not being able to describe it.

Personally I don't know much about IIH, but what I will say is that you asked about whether it got worse over time and I can certainly answer that one. Yes, it does get worse over time. My symptoms started around 10 years ago, but at that time it was just that my feet started to hurt in that way I couldn't describe to people. The nearest I could say was that it felt and looked as though I was sunburnt. It only used to last a couple of hours in the evening and always worse in hot weather. What I never understood was that especially in winter if I took my dog a walk late at night and it was cold by the time I got home they felt much better. I must add that I always wore sandals even in the winter. I now know why they felt better as it was the cold!

I didn't even tell my doctor because I didn't know what to say and it wasn't that bad really. However, as time has gone on it just gradually got worse and worse. I did tell me doctor quite a few years ago but he just said it was peripheral neuropathy and not much else. It's only quite recently that doctors have been actually taking notice of me and it's still under investigation. My doctor had never heard of EM until I showed him this association. There have been other complications over the last 2 or 3 years and so it's been ignored as they were considered more serious.

Now it's there all the time! The only time I get any relief at all is to sit with my feet in a bowl of water, not too cold as you get rebound. I have to have them inside freezer bags first as I have ulcers on my feet and so I can't get them wet.

I really do hope that it helps joining in here.

19

No worries! Nice to Meet you, Greg! And welcome back, sorry to hear things have been so difficult! Hoping for a break for you soon. Thanks for the tips about foods. I will start doing some reading about it. IIH is also worsened by certain foods containing nitric oxides, vitamin A, sodium, MSG, etc... so... I am interested to see what overlaps.

Your comments about the pictures, was that to my original post?

"Definitely looks like EM to me - and EM can co-exist with Raynauds and intermittent and random symptoms are also a commonality - it took over 7 years for me to get diagnosed - it can be a very frustrating condition to have and a lot of times the doctors do not know the cause, let alone a cure ...."

I appreciate having your eyes on it, as I got the impression my Neuro had only ever seen pictures in school/workshops, etc... and didn't think it looked severe enough. At the time I had no Raynaud's like episodes either...so that's why he said you likely have "erythromelalgia" and then nothing happened since then.

Thanks for your input. Wishing you well....Taleema.



frostbite said:

Hi Kerri - Nice to meet you and Thank You for thinking of me - I hope you are getting some relief for your symptoms - It is a very Hard Road we walk with EM - That is if we can walk ... It is a very difficult struggle as I know only too well and you are only starting to find out just how difficult it can be getting a treatment that will do some good for you - Trial & Error is about the only way to find something that may help - Go easy on any new medication - if you don't feel right or it makes things worse then Stop taking it - as some meds can do irreversable damage ...

I don't want that to put you off trying new meds but just be careful please ...

Cheers & Take Care -

frostbite (Greg)

COOMA NSW

Australia.

PS - Apollogies to Taleema _ It is not intentional that I appear to be hijacking your posting - I have been quite unwell of late and just like to give a short reply to those who have wished me well - Cheers to you Taleema - I do hope you are getting some help for your condition - as we are all in the same/similar circumstances and here for others when needed- So please keep asking for help from any quarter - Great bunch of people here and Welcome to You - Take Care - frostbite.

Kerri said:

Frostbite, glad ur back, been thinking of you!!
20

You know... I don't think it's fair to yourself to say your problems are small, not sleeping for 16 years is a long time...be kind and gracious to yourself... any time there is loss of the life you had hoped for that is so painful and one must learn new ways of living and making the most of it--so hard...best wishes...

red toes said:

So sorry for your problems. When reading everyone's problems it seems to make mine small. Even though EM has ruined my life because I can't sleep due to pain in my feet and legs. There is no rhyme or reason to any of mine. I take clonidine and gabapentin and looking for a dr to help. After more than 16 years I finally have a diagnosis.