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goincrazy2 07-23-2007 09:51 AM

18 months of hell, need answers!
Hello everyone, I am really hoping you can help me as I don't know where to turn. My apologies if this post goes on too long but I am tearing my hair out in frustration and hope you can help point me in the right direction.

My husband has been battling a series of weird symptoms for the past 18 months. The symptoms are intermittent but are becoming more frequent.

... Severe problems with his speech. Sluring and difficulty forming words
.....His memory is terrible ( couldn't remember childrens birthdays or his
own address)
.....Severe weight loss, he has lost 40 lbs and another 2lbs this week despite eating well. He had none to lose so it is very noticable.
.....Frequent urination
.....Bowel irregularites
.....Cognitive difficulties. Following sequences is difficult
.....Confusion- driving has become difficult
.....Numbers have become difficult- this from a man that could work out
anything in his head.
.....Writing...his writing now resembles a 5 year old
.....Shakiness in his hands
......Numbness in left arm
......Tingling and lack of sensation in left hand
......Weakness in left arm
.....general weakness all muscles have disappeared. Could be weight loss?
......Stumbles a lot-will fall up stairs on occasion and trip more often, not sure why.
.....Difficulities concentrating

MRI negative, CT scan negative, blood work good. Neuro tests for MS negative as far as Neuro is concerned.

We have been bounced around from doctor to doctor and are going crazy as we do not have an explanation for what is going on. I am watching my once fit and extremely healthy husband deteriorate before my eyes.
He had never been sick a day in his life and is now this.

Because of the severe changes he became depressed. He will avoid social situations because of his speech and the way he looks has shattered his self esteem.

On Thursday he woke up and thought he'd had a stroke. He could not move his hand and his arm was weak. I rushed him to the Emergency dept and they did a CT scan, dopler ultrasound of his neck, ECG and complete blood work. All came back negative. The doctor said he did not know what to tell us and that we should go back to the Neurologist.
Now, he can use his hand but it is very weak. He has a numbness and tingling feeling in his thumb area and the upper arm has decreased sensation.
Holding a fork is hard as is getting a t-shirt over his head.

Do any of you have any suggestions as to what this might be. Does it sound like MS? At this point we just want a diagnosis so we can get on with our lives. He is starting to think it is all in his head and that he is going crazy and it is destroying our family.

Thanks for listening

goincrazy2 07-23-2007 09:59 AM

More symptoms
Sorry everyone....I forgot to add that my husband is also extemely tired and that he seems to have something going on with his throat. He clears his throat a lot, he says that it feels like something is stuck in there.
Don't know if this has anything to do with anything but at this point we are grasping at straws!


MSNik 07-23-2007 11:55 AM

Re: 18 months of hell, need answers!
I really feel for you, sounds like a very tough thing to deal with. Truthfully, ths does not sound like MS; however it DOES sound neurological. Has your husband been spoken to about Parkinsons Disease? My stepfather has it, and his symptoms are very closely related to your husbands....also, MS does not generally come on this fast...the disease is progressive, so it is possible- and its also very possible that you didnt notice the early signs, nor did he--but other diseases such as Lyme, Parkinsons and some forms of brain infections can come on much faster and harder.

Lyme can truly only be tested by one lab to get a definitive answer; so many tests come back negative which are later found out to be positive...spinal fluid is also a way to test for Lymes, as well as infections...has a spinal tap been done? or mentioned?

You said MRI negative, how long ago was it performed? MRIS can change from day to day..if its been more than a year, he needs another one. And, what was scanned? Was it both the brain and Spine?? You said Neuro tested for MS...there are really only a few tests for MS; and alot of it is clinical evaluation..if he didnt have a spinal tap and he didnt have both a brain and Spine MRI, he wasnt tested for MS...from there, evoked potential tests might be done as well as other tests on the eyes and nerves.

You can rule out ct scans as well as ultrasounds as testing tools for neurological diseases- although they might have been the necessary tests at the ER- the dont tell much about Neurological disease usually.

Last question; what KIND of specialists have you been seeing? And, is it possible to see a MS specialist in your area, and possibly even one who specializes in Parkinsons? A diagnosis is not going to be easy, but both of these diseases usually require RULING out everything else, which would be a helpful place to start!

I wish you luck, this sounds horribly dreadful to be going thru. Even with my own MS, and the fact that I am watching my stepfather become more disabled by the month- knowing what we are dealing with makes it that much easier..
Please keep us posted and try to be brave. Your husband needs you more than ever.

moore170 07-23-2007 07:27 PM

Re: 18 months of hell, need answers!
There are a few things that run through my mind when I read your husband's symptoms but he really needs a good work up from a neurologists that specializes in brain issues. I know here in the Pacific NW there is a clinic called "Brain Matters" I don't know if there is something similar in your area in CA. There is definitely something that is going on that seems some Dr. would take him under his wing to find out what it is.
I have had many of his symptoms and I have heard of others with MS having some of the ones I haven't had but there are a few things that I haven't heard being related to MS.
I wish the best for you two and hope you can find an answer.

duttin 07-23-2007 07:44 PM

Re: 18 months of hell, need answers!
Nikki and Candy has hit on the majority of the questions and answers,but has your hubby had an EMG/NCS to test his muscles and nerves?This test will look for neuropathy,myopathy.

For starters I would find a neurolologist the specializes in MS to either rule it in or out.

I would get copies of all medical test,MRI's and report,blood work and so forth.Being bounced from DR to DR he needs to have copies of all his records.This way he can copy them and when seeing a new DR they have all the peices not just bits and peices.

goincrazy2 07-23-2007 08:03 PM

Re: 18 months of hell, need answers!
Thank you all so much for your input.

These symptoms have been coming on slowly over a period of 18 months or so. He has seen a Neurologist that did all of the relex tests etc. He does not think he has Parkinsons either. The arm weakness is the newest symptom ( have not seen the Neurologist yet )which is making us think that it is more of a neurological matter.

I am not sure exactly what they did when he had the MRI last November. When he had the MRI he did not have problems with his arm or balance. He had his grip strength tested today and he was 95 on his good side and 25 on his weak side. My husband has copies of all of his tests so we don't have a problem keeping track.

As well as the Neurologist he has seen a Psysiatrist( muscle/pain specialist), Psychiatrist and his GP. He is seeing the shrink because he has become very depressed over what is happening to him. The Psychiatrist is the one that is now trying to get to the bottom of it as he thinks there is obviously something else going on. He was about to order a CT scan and blood work when we ended up in Emerg and saved him from having to do it.
Honestly, I feel like I am going out of my mind. Not knowing what is going on is the worst thing.

What kind of symptoms did you all start with? What makes you think it is not MS? This will help me a great deal so I can stop thinking it might be MS.
If I was more certain he had MS symptoms I would find an MS specialist, we would go anywhere to get some answers.

Thank you all for being supportive

duttin 07-23-2007 08:39 PM

Re: 18 months of hell, need answers!
He definatly has some neurological deficits,but it seems to fall more into a muscular pattern.

I would strongly urge for a EMG/NCS ,muscle enzyme test,a MRI of the c-spine and thoracic.I would push for a lumbar puncture to rule out disorders.

It might be in your hubby's best interest for you to find an MS specialist,NO 1 it would rule it out or in,plus these specialist are fantastic in either finding the cause or referring you to the proper DR.

moore170 07-24-2007 01:19 PM

Re: 18 months of hell, need answers!
The two symptoms that struck me as not usual for MS are having difficulties with numbers and the weight loss.
I have had weight loss but I have also had weight gain - it depends on my activity and stress level. His depression could attribute to that. Is he eating?
His trouble with numbers seems to be the most perplexing to me - it could be part of his cognitive problem but it seems to be more definitive.
Not being a Dr. I would not presume to know. I wouldn't totally rule out MS, he could have the chronic progressive type. This would account for the rapid decline.
Sounds like they are checking it all out and you have a good record of what has been done.

goincrazy2 07-24-2007 08:12 PM

Re: 18 months of hell, need answers!
Thanks again for all of your advice.

We are going to push for an EMG and another MRI. The weight loss is a huge concern to me as he is very thin despite eating well. He is more concerned with his arm.
We know he does not have Parkinsons or a brain tumour. We know he does not have any dementia or an aneurysm of any sort. That is about all we do know.

We see the doctor on friday. I will let you all know what happens and keep you up to date.

Once again, thank you from the bottom of my heart.

goincrazy2 07-26-2007 02:55 PM

Re: 18 months of hell, need answers!
Hi everyone, Just thought I would give you a quick update as we saw the GP today. He is arranging for my husband to get an emergencey apt with the Neurologist next week. He wants another MRI and an EMG to rule out MS and Parkinsons.
He does not know what else it could be but thankfully, he is now thinking it is a neurological problem and not all in his head! So, going to the emerg was a good thing.
I'll keep you posted.
Cheers and God bless

snoopy220 07-26-2007 03:23 PM

Re: 18 months of hell, need answers!
I think the two of you need to find an Ataxia Specialist as his symptoms seem to be centered in the cerebellum. He may have Olivopontocerebellar Ataxia which affects speech, bowels, and arms and legs. I am unsure of the cognitive change. There are so many spinocerebellar ataxias as well. I would suggest you go to Johns Hopkins for tests and an evaluation.


steerpike 07-29-2007 07:56 PM

Re: 18 months of hell, need answers!
Has he been checked out for cancer?

Para-neoplastic cancers can cause symptoms identical to MS, including numbness, tingling, and weakness. These cancers are usually hidden and can cause the body to mount an inflammatory immune response-- i.e. demyelination-- as a secondary symptom.

Wasting is often a cancer alarm bell.

If the weight loss is due to muscle atrophy, though, it's probably something else.

Does he have any symptoms of infection, such as fever or night sweats?

zandvoort 07-30-2007 04:51 AM

Re: 18 months of hell, need answers!
Hi Goin' crazy-

I am extremely sorry that you & your husband are going through so much. :( Your husbands symptoms match Lyme Disease. Including the weight loss. It is a very complex and mis-understood disease. There are about 100 symptoms and people can present with any combination of them. Dr's seem to think that the Lyme blood tests (elissa and western blot) can be trusted but those who specialize in the disease know that false negatives are common. I was just diagnosed last week after almost a year of the doctor rounds. I finally went to an LLMD (Lyme Literate MD) and what was horribly bewildering to everyone else was extremely obvious to him. PLease take a look at Dr. Burrascano's Diagnosis and treatment of Lyme Disease on the web. It has an awesome checklist of symptoms that can help you decide if you should add that path to your pursuit of a dx.

Best of luck in your seach.:)

datgrlstef 08-20-2007 04:16 PM

Re: 18 months of hell, need answers!
Please visit your thread in the Parkinson's forum here. I have posted also about Lyme, as all of his symptoms sound very much like it could be Lyme. And you're in Canada? There is a spike of Lyme cases there, and there are a lot of great resources for your country, regarding Lyme.

(I myself have been having all sorts of health problems over the last decade or so: chest pains, stomach issues, neuropathy, cognitive issues.. Have had MRI's, mammograms, sonograms, an endoscopy, colonoscopy, allergy testing, EMG/NCV test, chest xrays, test for all sorts of diseases under the sun. Even some thyroid issues. And yet my neurologist still had no clue what was wrong with me. We thought maybe MS, but because there were no lesions in my MRIs, she felt it ruled it out. It was only after somebody suggested Lyme, that I seriously considered finding out about it- all my symptoms matched up. And I never thought about that tick bite years prior, until then. Or the wierd rashes over the years! My Neurologist and regular dr pretty much laughed at the idea, but I found a doctor in the next state over, willing to help me and to give me the proper testing. Turns out I do have Lyme! I don't wish Lyme on your husband- or any other disease for that matter. But it's totally worth at least having him tested to rule it out, if nothing else).

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