Cipd?

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1

Hello i hope its ok for me to be here as i do not yet have a diagnoses of cipd, but think i may have it.

I am a 60 year old male, and former Reg Nurse for 36 years........

The Doctors i have seen have no idea ....... initially i thought I ,may have sjorgrens but am now thinking perhaps cipd.

To complicate my symptoms i collapsed at the beginning of the year and spent five days in Hospital and was diagnosed with Bppv..............Whilst an inpatient i had brain ct scans and brain mris...........all normal

The rheumatologist I saw after two consultations said go home and exercise.!!! as though my five months of hell were all in my imagination.

Said my spinal mri was good and no ms,,,,,,,,,,,,,,,,,and i need to forget it, what a joke..............


I am doing things all the time on my property and its the fatigue and symptoms which cause me to stop.


Initially, in April, I developed ascending numbness and shakiness symmetrically from my toes ,first right foot then left, which slowly spread upwards. Eventually reaching my shoulders. My hands felt weak and legs rubbery.

When i tried to run i felt i looked like a spastic as it seemed my legs were all over the place, although in reality they werent.

I had some peripheral neuropathy?Raynaulds with freezing feet and hands and sometimes burning. I seemed to trip on uneven ground.


All my mri cat scans and bloods are normal. Emg came back normal though he only did my good leg.Thats another story!!


Left leg at times feels like I have a heavy boot on it , sometimes full of water. I am not depressed anxious or a hypochondriac. However ascending weak shakey feeling seems to have lessened and replaced with dull aching...................and general feeling of being unwell, lots aches and pains ............

I am now looking for a good neurologist in Perth West Australia where i live. Incidentally i was a fit 60 year old, doing lots exercise, eating a good diet, not smoking or drinking with a bmi of 21..................

Paul

2

Dear Paul,

Welcome to this group. I am new to CIDP, myself. I hope someone with more knowledge will respond to your post soon.

From what I gather about CIDP,is that it is somewhat different for each individual. I'm very happy that you are looking for a neurologist who has experience in CIDP. I actually have to have two neurologists, one for Dystonia and one for CIDP. Experience with CIDP is so important with the neurologist you choose. But, I don't need to tell you that since you are in the medical field.

All my best.

Jan

3

Hi Paul right off the bat I don't know what comprises the list of test that need to be done to determine that you have CIDP.

I had them all done and there was no question. I have CIDP. Look for that list and make sure that your neuro does the all. Ethel

4

Hi Paul,

I am in a similar situation in the sense I have no diagnosis, but I suspect CIDP (or CIP). I have been having strange symptoms for a while and am desperate because no doctor can figure out what's wrong with me. I saw several neurologists who dismissed my symptoms. I had a brain MRI, cervical MRI, EMG of the arms and EEG. Nothing found. My hands and feet get numb every single night. I have burning sensations all over the body and other strange sensations, as if I am being hit with a cold/wet tip. Plus, for several months this year, each time I tried to fall asleep my breathing changed in a strange way, and at night I would wake up suffocating. Then, more recently, I became very very weak and exhausted. My legs feel as if they are of wood. I have chronic dizziness but my balance and reflexes are very good. I desperately need to help to figure out what's wrong with me, so that's why I am on this site. I am only 49 and I never imagined this. I would be grateful for any input from other members.

5

Hi Dana,

You are the first person to mention breathing issues. I forget to breathe when I am asleep and use oxygen to "prime the pump" when I'm asleep. I'm waiting to go to Mayo Clinic since my symptoms include such strange ones. The burning I have up and down my back and my legs feeling like worms are crawling in them is slightly better when I take my medicine for Lyme Disease. I'd love some answers too. I hope I get some at Mayo Clinic.

JanD

Dana said:

Hi Paul,

I am in a similar situation in the sense I have no diagnosis, but I suspect CIDP (or CIP). I have been having strange symptoms for a while and am desperate because no doctor can figure out what's wrong with me. I saw several neurologists who dismissed my symptoms. I had a brain MRI, cervical MRI, EMG of the arms and EEG. Nothing found. My hands and feet get numb every single night. I have burning sensations all over the body and other strange sensations, as if I am being hit with a cold/wet tip. Plus, for several months this year, each time I tried to fall asleep my breathing changed in a strange way, and at night I would wake up suffocating. Then, more recently, I became very very weak and exhausted. My legs feel as if they are of wood. I have chronic dizziness but my balance and reflexes are very good. I desperately need to help to figure out what's wrong with me, so that's why I am on this site. I am only 49 and I never imagined this. I would be grateful for any input from other members.

6

Hi again, so you have Lyme too. Guess what? I have burning of my back too! I wonder if this could be a symptom of Lyme. What medication do you take for Lyme, btw? And are you diagnosed with both Lyme and CIPD? And, forgive me for inquiring, how old are you and how long have you been suffering with Lyme and CIPD? I am asking so many questions because many people have suggested I may have Lyme--as I said, I don't have adiagnosis; was tested for Lyme 3 times--negative--but as you may know, testing for, and diagnosing Lyme is very difficult. I know people who tested negative 9 times and positive only the 10th time. I also know people who only tested positive with the Igenex lab, which my doctor doesn't want to do because it's a controversial one.

JanD said:

Hi Dana,

You are the first person to mention breathing issues. I forget to breathe when I am asleep and use oxygen to "prime the pump" when I'm asleep. I'm waiting to go to Mayo Clinic since my symptoms include such strange ones. The burning I have up and down my back and my legs feeling like worms are crawling in them is slightly better when I take my medicine for Lyme Disease. I'd love some answers too. I hope I get some at Mayo Clinic.

JanD

Dana said:

Hi Paul,

I am in a similar situation in the sense I have no diagnosis, but I suspect CIDP (or CIP). I have been having strange symptoms for a while and am desperate because no doctor can figure out what's wrong with me. I saw several neurologists who dismissed my symptoms. I had a brain MRI, cervical MRI, EMG of the arms and EEG. Nothing found. My hands and feet get numb every single night. I have burning sensations all over the body and other strange sensations, as if I am being hit with a cold/wet tip. Plus, for several months this year, each time I tried to fall asleep my breathing changed in a strange way, and at night I would wake up suffocating. Then, more recently, I became very very weak and exhausted. My legs feel as if they are of wood. I have chronic dizziness but my balance and reflexes are very good. I desperately need to help to figure out what's wrong with me, so that's why I am on this site. I am only 49 and I never imagined this. I would be grateful for any input from other members.

7

Hi Dana,

I'm 65 years old. I've had Lyme Disease for about fifteen years. I was exposed to mold, not bitten by a tick. Although I do test positive for Lyme, as you said, the blood test is not that accurate. I was my internist's first patient in the 1980's. He is very unique. His name is Dr. Jeremy E. Kaslow in California. He is board certified in internal medicine, immunology, allergy and something else. He is a metabolic specialist now for rare disorders and diseases. He's known me so long that he knows I cannot handle conventional medicine for Lyme, like antibiotics. For the Lyme Disease, he uses homeopathic medicine on me. About five years ago, I had the crawly leg feeling and he detoxed me for Barrelia with homeopathic drops. It went away for several years and came back with the burning back. This time he is detoxing all of my organs with homeopathic medicine. The Lyme can cause neurological problems. He coined CIDP as Chronic Invasive Neurotoxic Microbe-related Immune Suppression (CINMIS) to include exposure to all sorts of nasty environments. He knows that I was exposed to mold at a home and at work at the same time in 1995. So, if this has turned into CIDP, I really don't know. He was all for the IVIg infusions. He said it might help, and wouldn't hurt me. I get a 24 hour relief from the back burning and increased energy, but that's all. I want to talk to my neurologist about increasing the strength of the IVig in January. Dr. Kaslow has never said anything about my forgetting to breath when I go to sleep and using oxygen. I have been resuscitated twice. Several of my near death experiencer friends have the same issue. So, I have blamed my breathing problems on my NDEs. I'm still going to go to Mayo Clinic to get some answers.

Keep me posted on what you find out.

JanD

8

I checked this Dr.'s website--he seems interesting, but I don't understand how you got Lyme from mold.

9

Mold is loaded with microbes similar to what ticks can give us. I did give a dog a tick bath about ten years ago. Would I know if a tick bit me??? They were nasty looking on the dog I was baby sitting, silver and slimy looking when they filled with blood, and big enough to see..

JanD

Dana said:

I checked this Dr.'s website--he seems interesting, but I don't understand how you got Lyme from mold.

10

Hi Paul, did you get a diagnosis? I am very curious, as I have no diagnosis myself. My legs too feel as if I have heavy boots. I can barely walk. I too have cold feet, and aches and pain all over the body, esp if I walk or try to exercise. I am desperate, so I am looking for people with similar stories to see how they solved their problem. I saw several drs. who dismissed me based on the fact that my reflexes are good and EMg was good (but she did my arms and my problem is my legs).

Q: 1.how are/were your reflexes? Mine are good and it seems that most CIDP people have bad reflexes.

2. You said initially you thought you had Sjogrens--me too!--but now you think you have CIDP. I do have very dry eyes nd lots of fatigue (insomnia included). why did you think you have Sjogrens?

3. You said you had burning. Where? I have lots of burning in many parts of the body.

Would be grateful for an answer.

11

Hello Dana,

I am a lot better but not back to how I was. The main issue now is my left foot which goes odd as I get more tired.

When I say odd its hard to explain, like its numb but I have feeling , like its slightly heavy or not mine. I also get sensations of either ice or hot water on it. I still have some fatigue and dry mouth, however as its not progressing and emg and nerve conduction negative, the Neurologist said maybe small fibre neuropathy which would cause all my symptoms see here........ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/ Apparently it affects the sensory, autonomic and enteric nervous system...

My Gp says its very hard to diagnose small fibre neuropathy here in Australia , and it doesn't show up on emg or nerve conduction tests , unless large fibres are affected.

My Gp doesn't want to do any more tests or those of an invasive nature while I am improving........Also I cant see the point as I want to stay off meds as long as possible. All my bloods were ok but for the first time I did have a positive Ana this time but apparently not that significant.

With regard to my reflexes I am not sure I think when my limbs were at their worst they were minimal or absent as I never responded to the hammer instrument they used.

Initially I thought I had sjogrens because of dry eyes and mouth esp night times.......Guess its just a wait and see, started driving again as legs got better then had a further vertigo session after Christmas, but keep myself busy in the garden.

Don't think I could work again though, too fatigued to last eight hour day etc Plus I tend to trip over things a bit as I believe it has slightly affected my gait.

Hoping you soon feel brighter and I know how frustrating it is to be ill and have no diagnosis and some Drs who are not helpful.

All the best Paul

12

Hi Paul, thank you for answering. So, from what you write I understand that your diagnosis is "small fiber neuropathy" (thank you for the article), but you don't have a diagnosis of CIDP. Is that correct?

I too have dry eyes, and sensations of hot and cold water in many parts of my body.

13

Yes you are correct, my negative emg ncc appears to mean I do not have demylination and therefore do not have cipd.

No one medically is prepared to actually say what they think it is for definite , and I can only hope it doesn't return or flare again. I am no wiser ...... I am being sent to another medical specialist in a month or two and may learn more then or hopefully get a neurology referral.... Its a slow progress ....................

14

Hi; I joined this group recently, although I also do not have a diagnosis yet. It seems from the discussion above that, although many of us have differing symptoms, the one thing we have in common is that we've been told repeatedly that there is nothing wrong with us and we should go home and exercise! That is so infuriating. I am a 72 year old female, and have had neuropathy for many years. It was first documented in 1994 when I stepped on a 4 inch nail at a construction site and it came up clear through my foot but I did not feel a thing. It had to have been present for a while, without my full awareness. It was not painful at that time. I've had two neurological workups over the years, and was told I had neuropathy. Duh! I KNOW I had neuropathy, that's why I was in their offices in the first place! In 2003 I developed type II diabetes, but it has been very well controlled, and I was even taken off the medications for it from about 2008 to 2010 because my sugar was too low. Then I gained a little weight and it came back, so I went back on a minimal dose of medication and have maintained a near-normal A1C since first diagnosed. But of course, now that that diagnosis is on my chart, they just write the neuropathy off as being diabetes-related. I am in the process of trying to find a neurologist withing reasonable travel distance who will not simply dismiss me as a crock and tell me there is nothing wrong with me. Wish me luck, as I also wish all of you luck in finding some answers. I don't know if I have CIDP or something else. Much of it fits; some of it does not fit. I recently discovered that my 75 year old non-diabetic brother, who lives on the opposite coast, also has unexplained neuropathy, so maybe it is something hereditary.